Posted By: MarvB Recently Diagnosed - 04-23-2018 06:05 PM
Hi everyone. I was just diagnosed with Squamous cell cancer of the tongue that is moderate to poorly differentiated about 12 days ago. I'm still in the process of staging and scheduling surgery. The surgeon said that, based on his preliminary evaluation, I will probably need a hemiglossectomey to remove about half of my tongue, followed by radiation. That in itself is very scary. But I'm seeing things on this site that scare me as much and are very discouraging. I see where people have listed their disease history. So many of them seem to show multiple recurrence of the cancer. I didn't think to ask my surgeon about it but, is it common to become a perpetual patient after the first diagnosis and treatment? Any help is appreciated.
Posted By: ChristineB Re: Recently Diagnosed - 04-23-2018 10:10 PM
Marv, the signatures of those who are most frequent posting members is NOT a good place to find recurrence statistics! Most OC patients do NOT have recurrences. They are some of the more fortunate ones. They get diagnosed, struggle thru surgeries and/or rad treatments, slowly regain almost all of their pre-cancer functions and return back to their regular lives. The people who post most often usually are the ones who cancer hasnt been as "kind" to, unfortunately (and also luckily) Im one of those OCF members. Theses are the ones who have their daily struggles just to get thru the day, their lives are very far from what they once were and these members usually are the ones who no longer go to work everyday anymore.

One thing to take in and always remember about our online forum... everybody is different and will respond to things in their own unique way. Even if you found someone who has a similar tumor location, size, stage and they are generally similar such as being the same age, sex, previous cancer, etc, they still arent an equal comparison as each patient is an individual and will respond in their own way, they have their own medical history, allergies, strengths and weaknesses, etc. Try not to let the stories you read sink in so much. Im posting the link to our main OCF site where you will find page after page of info without the scary stories. Maybe you would find it a little easier reading the medical facts instead of the more personal stories and Q&A. Try learning from all the things you are reading, even if you are just learning what to avoid. By educating yourself about oral cancer, you will become a much stronger advocate for yourself.

A second opinion at a different facility, preferably at a Comprehensive Cancer Center (CCC) would be a very good choice if its available. They use a team based approach where all the experts are on the same page. They work together to create your individual treatment plan. Tumor boards are when all the specialists get together and discuss each individual case. Then a treatment plan is created well before any surgery is planned. There are even places that provide free or very low cost airfare and rooms for cancer patients who travel for their treatments. Find the very best medical team you can and get started to eliminate the cancer. Remember your physician and medical team work for you so choosing the right team and facility are crucial.

List of CCCs

OCF main site --- UNDERSTANDING



Posted By: MarvB Re: Recently Diagnosed - 04-23-2018 11:35 PM
Thanks Christine.Unfortunately, my dentist and the oral surgeon he sent me to misdiagnosed me. I wasted over two months with them and the cancer has spread quite a bit. I think I have a good medical team now. So far, they have been good. I admire the people on here who have gone through this and seem to have a positive attitude. Hopefully I can maintain (or get) that kind of attitude too.
Posted By: ChristineB Re: Recently Diagnosed - 04-24-2018 12:02 PM
Im very glad you are finally on the right track!

Focus on what is within your control and avoid the "what if" thinking as much as possible. Many patients and caregivers too need more help to handle a cancer diagnosis. Many will need anxiety meds or some temporary help talking with a therapist to get thru it. Theres nothing wrong or to be ashamed of if you feel you're trying your best and you just cant get to a more positive place. Talk with your doc and ask what the treatment facility has available to help you to cope with everything. Depression runs very high among OC patients. Anyone who has not always been the most positive thinking, they probably should have this chat with their doc sooner and not wait to see how things go. You cold also call the treatment center and ask a general question about what they offer for counseling their cancer patients. Most places have a group who specializes in working with cancer patients. It cant hurt to check it out. Many of the meds take weeks for patients to feel their full effect.
Posted By: MarvB Re: Recently Diagnosed - 04-25-2018 02:26 PM
I'm curious if anyone else has had this problem. I'm still waiting for treatment and my pain level is rapidly increasing. Not so much on my tongue, but on my teeth on the side with the lesion and on the roof of my mouth. The roof of my mouth feels hot and my teeth on the side with the lesion are very sensetive. I've mentioned it to the surgeon whose going to do the surgery and he just said he could give me stronger pain meds. Also, my appetite is gone. I've lost 12 pounds in about two weeks. I take a few sips of soup or of a protein shake and I'm full. Is this unusual? Thanks
Posted By: gmcraft Re: Recently Diagnosed - 04-25-2018 05:23 PM
I’d suggest you seek help from your PCP if you’re having difficulty getting an appointment with your surgeon. We had a lot of help from our family physician.
Posted By: PaulB Re: Recently Diagnosed - 04-25-2018 09:03 PM
MarvB,

I’m sorry for your treatment delay, and it is an issue at some places! I think they’re trying to keep it a certain time period, but don’t want to quote the exact time, maybe 30 days. I think I’ve waited longer! There are other factors involved, and hopefully you’re kept in that time frame.

Pain is often a sign of the cancer or surgery, even treatment, and disrupts your appetite. I did my best to alleviate this, besides telling my doctor, taking opioid pain meds, otc oral care products, brushing with a soft toothbrush, eating soft foods or just drinking nutritional drinks. Usually treatment alleviated the pain, but as you did, tell the doctor, and staff, everything.

I hope you have help at home coping with everything? Besides coming here, there are local support groups and professional counseling to help deal with this cancer. I can say you’re not alone here!

I hope this helps, and good luck!
Posted By: MarvB Re: Recently Diagnosed - 04-29-2018 02:06 AM
Thanks Paul,

I hope things are going well for you. I do have help at home from a great wife and a lot of support. I have people that I haven't seen in a while offering to help and support me. It's very humbling. I have found though that, no matter how many people you have loving and supporting you, this is a very lonely journey.
Posted By: MarvB Re: Recently Diagnosed - 04-29-2018 06:42 PM
I have another question that I'm sure many of you can help me with. Believe it or not, the trach tube is one of my biggest fears. I'm claustrophobic. I can't even watch movies about someone being buried alive because I feel like I'm suffocating. My question is, what does it feel like that when you can't breath through your mouth or even swallow saliva? If it's like I imagine it is, I know I'm going to have a panic attack like I did trying to watch one of those movies.I had to get out of the theater and take a lot of deep breaths. I know it probably sounds ridiculous to some people but I've been this way all my life.
Posted By: PaulB Re: Recently Diagnosed - 04-29-2018 09:23 PM
MarvB,

I’ve avoided a tracheotomy after surgery a number of times, although it was a possibility after some of my surgeries. It wasn’t until I had a mandibulectomy in 2017 that I needed one. I wasn’t too happy, and was a concern of mine too, especially how to communicate.

I had the iSpeak apps on my phone, but that proved a waste because they took my phone away in surgery, and recovery seemed like a day! Eventually, I had no visitors, I used my hand lingo to get a writing board, as the iPhone was too small, and my vision was blurry. Eventually, I eased into the writing board and started communicating somewhat with my scribble. By the 4th day I was already in the step down unit, and my surgeon felt the swelling was down enough to put a speaking valve in, and was so much easier to communicate.

Honestly, I was so out of it at first, and then trying to communicate, I forgot about the trache fear. The trache was removed as I was discharged on the 7th day to a nursing home, my request, but the hole in my throat never fully closed until a month later.

That was my experience, but it was temporary. The moral of the story, make sure you have someone there to communicate on you behalf, and give your speaking supplies or whatever else you need!
Posted By: ChristineB Re: Recently Diagnosed - 04-29-2018 10:48 PM
Paul reminded me of a couple things I should tell you. My situation was definitely NOT the average one. I saw many who had similar surgeries and they made out just fine, some were sent home after only about a week in the hospital. I'll explain what I can remember but it is NOT the usual experience most patients go thru so please dont worry more after reading about my issues... When I had a trach, from what I remember, I did NOT like it but I had to have it. I had the passey muir valve trach so I could talk easier so if you must have a trach ask for that one. Tell your doc this prior to the surgery and again when he comes to sign your body prior to surgery. When I think about my trach time, I was so uncomfortable and in so much pain from major surgeries, several skin graphs, staples across my face and arm, etc. Everything hurt!!! Even my wisdom teeth hurt me which I had removed 20+ years ago. LOL! Most days I just would lay as still as possible, moving even the slightest made everything hurt even worse. Remember... consider the source, this is coming from someone who is extremely wimpy!!! I was also pretty foggy during that hospital stint. I had trouble remembering from one day to the next who came to see me or what we talked about. I was kept in a medically induced coma for 3 weeks due to complications. When I was finally awake, I felt like I was in a daze most of the time. I could not concentrate, read a book, walk without significant help, I was very unsteady on my feet and didnt even have the strength to walk to the end of the hall and forget about walking by myself... that was way beyond my limited capabilities. I could barely text (or completely understand the text conversations going on), my fingers had trouble typing and I could barely read the text message, let alone figure out what it meant. Most patients are groggy after a major surgery. Being in pain and being groggy makes it so most patients arent too concerned about a trach or any other medical devices that are used on them. Even though I wasnt a fan of the trach, it was a necessary evil. What bothered me more than the trach was something that was annoying, it didnt hurt at all, it just bugged me. I felt the blow up leg balloons that kept inflating every minute or so making it impossible to rest and get comfortable. Bottom line is while in the hospital after having a major surgery, there are so many other things that take precedence over having a trach. Try your very best to avoid anticipating a trach and how you will manage it. Thats some of the "what if" thinking that only makes things so much more difficult on patients than it has to be. Kinda like borrowing trouble. Most patients find that focusing on something positive helps decrease their anxiety over a specific treatment, appliance, etc. Im sure you will be groggy and not even notice the trach at first. Then when you do notice it, you may not be aware enough to pay any attention to it.

The SpeakIt app is what a friend of mine always used. She was a wiz with it and found it to be super simple to use.

Yes, cancer can make you feel like you are alone on a deserted island. You are NOT on your own, we're right in your corner cheering you on. Stop back frequently!!! Dont forget you have us here to help you. We understand what you're going thru, many of us have been thru similar things and know exactly how you're feeling.
Posted By: MarvB Re: Recently Diagnosed - 04-29-2018 10:59 PM
Thanks Paul. I'm glad you avoided it as many times as you did. My biggest fear of the trach tube isn't that I won't be able to communicate. My wife will be there most of the time. She does most of the communicating for me now since the cancer hurts so much I can hardly talk. My fear is the feeling of not being able to swallow and to feel like I can't breath. I don't know if feels that way or not since I've never had one. That's why I was asking for input from people with experience. I think mine is going to be in for most of the week I'll be in the hospital.
Posted By: PaulB Re: Recently Diagnosed - 04-30-2018 02:18 AM
MarvB,

Not to bypass Christine's post, but I’m going to bed, and not sure when I’ll be online next.

I don’t recall them being a concern, at least now. I sleep on an incline bed at home, and probably was in the hospital. They have a little humidifier they put on the stoma site, so that helps. You’re pretty much out of it the first couple of days, I was, and pain meds help (morphine), but around the 4th day I was eating a pureed meal, sutting out of bed, so breathing wasn’t too much a concern as I recall. Plus, there was several nurse assigned to the 4 bed step down room, which is like ICU, and all were very attentive, and just waved someone over if needed.

I hope this helps, and was just my experience as I recall.
Posted By: MarvB Re: Recently Diagnosed - 04-30-2018 04:32 PM
Thanks Paul, Looks like you have seen you share of surgeries and treatments. I hope you're doing better now and don't have any more setbacks. As for being out of it, they said I would be up and walking the second day. They apparently don't let you lay around there. They said I would have the trach tube most of the week. That's what terrifies me. I wish I could hear from someone who has a similar feeling about not being able to breath on your own or swallow who's had the trach tube. If I know what to expect, I can try to find a way to prepare for it. Thanks again.
Posted By: MarvB Re: Recently Diagnosed - 05-01-2018 01:18 AM
I was told a few days ago by the surgeon that they were going to have to remove up to 60% of my tongue, followed by radiation. I told him that was acceptable but that I didn't want any more than that removed. I got a call from his office today telling me that they reviewed my tests again and that they may have to do a near full glossectomy. I told them no. My question is, has anyone on here had or know of someone who had radiation and chemo before surgery to shrink the tumor first or whose had radiation and chemo with no surgery? I know that having the near total glossectomy is my best chance to live but, to me, it' would not be the quality of life I can accept. Maybe I'm not as strong as some of the others out here but that's how I feel. So, if anyone has had radiation and or chemo without the surgery or prior to the surgery, I would like to hear from them. Thank You
Posted By: ChristineB Re: Recently Diagnosed - 05-01-2018 02:00 AM
I have had radiation with chemo as my first treatment plan for my first round of OC. My second bout of oral cancer was treated with only surgery as was the third round. After undergoing rads, patients have a compromised ability to heal. My doc was trying to avoid the mandibulectomy (jaw removal surgery) which unfortunately due to recurrences I ended up getting anyway. Recovery was a very long difficult one with needing IV antibiotics for 8 months along with hyperbaric oxygen treatments (HBO) to help the healing process. The odds of my survival going into the third round of OC in 3 years was slim but somehow I beat the odds and survived and eventually I recovered. Of course my stories are NOT those of the average patients. I had complications most patients do not go thru.

You definitely have some major choices and things to consider. I know those types of life-altering surgeries are NOT easy to decide. We're in your corner no matter what you choice would be, we are still here to support you.

I had a close friend who lived only a couple minutes away from me. She went thru heck trying to save her voice. Eventually she did end up losing her voice box anyway and used the SpeakIt app to talk for her. She lived a very full, great life even without having her voice. Sadly, no matter what she did, her cancer kept coming back. She had similar feelings as you do about her quality of life after losing her.ability to talk. What helped her make her decisions was getting second and third opinions from very well qualified doctors. Maybe hearing other opinions would help you too?
Posted By: ChristineB Re: Recently Diagnosed - 05-02-2018 05:05 AM
Marv, Ive been thinking a great deal about your last post since I replied. You may find this helpful, or you might not. At the very least it will give you a different angle to view your situation. Im telling you the chain of events that led me to change my decision of not to get treated to go thru with the major life changing surgery. I am going to be completely honest and explain in great detail why my mind was changed and Im so glad it was. I just want you to consider the entire picture before making the do-not-treat decision.

When I was diagnosed with my third round of OC in 3 years I was shocked. I had not felt as strong and well in many years. I couldnt believe I was now a Stage IV patient who was facing losing half my lower jaw when I was feeling great. This goes back to the feeling of everything being out of control and how as being the patient most will feel as some point they do not have any say in any of their treatment decisions. There seemed to be no options for me to decide anything. When presented with an option the first thing I said was NO! I was finally able to make my own choices. It really didnt matter to me what the decision was about, I just knew I was finally able to say NO! like I was taking some of my lost power back. The big picture of my future was bleak!!! As a single mother to 2 teenagers who had no one else, I was beside myself with trying to figure out how my children would be ok without me. You know you're in trouble when the doc says "its time for you to get your affairs in order" which was exactly what my ENT told me.

My survival odds were so low that my doc wouldnt tell me any numbers. I had made the hardest decision of my life and that was to not seek any further treatments. My thinking was it was much better and easier for my children to have their mother with them when she was feeling good and strong and able to prepare them to go on without me. When I posted my decision to not get treated, I was overwhelmed with objections from other members. They made an excellent point telling me I couldnt quit before I tried. I couldnt think of anyone who had survived 3 rounds of OC. It really bothered me thinking of every OC patient I knew and I couldnt think of a single one who got thru that 3rd round. Many patients didnt survive the 2nd round. I finally decided to go directly to the source of who knew the most OC patients. I called Brian Hill the OCF founder and asked him about knowing anyone who lived thru 3 rounds of OC. I could tell by his pause he was caught off guard by my direct question. To this day I kinda have a feeling he fibbed to me but thats ok, I couldnt be happier to still be here. Brian said "yes, there are 3 time survivors. Not many, but there definitely are some out there and if anybody could do it, I could." Between the OCF members nagging me to try instead of giving up and Brian telling me there are 3 time survivors out there I changed my mind and sought treatment.

Once I finally agreed to try I had so much to prepare before that surgery. My doc let me choose the date of my surgery and I selected 2 days after my sons birthday. I went right to work as I had only 2 months before that surgery date. I had TONS to accomplish. I gave my beloved dogs away to a friend from our forum who gave them both a forever home. I got right to work and put my house up for sale. I moved to an apartment that was close to the hospital instead of like my house was way out in the woods, 45 minutes away. I started writing letters to my children that they could read thru for many years chock full of important tips on milestones they will go thru in their life. I took them out and made some great memories. I decided that no matter what they were not going to think back to memories of their mother and think of me as someone who was weak and sat around crying about things instead of doing something about it. We went bike riding, long 25 mile rides along the river, zip lining (I chickened out after getting half way up the gigantic tree), horseback riding and all kinds of fun family adventures. I decided to have a huge birthday party for my son and told both of my children to invite as many and whoever they wanted but to invite everyone. I wanted them to be surrounded by people who cared about them just in case I didnt survive the surgery. So on Aug 22 we had a huge party in our small apartment which was a great day for everyone.

Just agreeing to go thru treatment for that third round of OC was one of the hardest things Ive ever done, let alone doing it! I ended up having complications from the surgery and my body rejected the titanium plate used to replace my jawbone. Leeches were used to promote bloodflow to the transplanted tissue, it was unsuccessful. The mandibulectomy had to be redone. This caused me to become disfigured. I was in critical condition being kept in the burn unit due to needing so much attention from the medical staff. After 3 weeks of being kept in a medically induced coma, it was time for me to wake up. During the hospitalization my oldest child would stay in touch with one of my OCF friends who would in turn post updates. My son also posted for me. To this day I cant read his posts without crying. He came and sat with me every day I was in the hospital weather I was awake or not. My daughter who didnt drive came as often as she was able to. It was incredibly difficult for my children to see their only parent which they depended on for everything unavailable and laying there sleeping in the burn unit or then the ICU.

Once I finally was awake I was in great pain from head to toe. I was so sore after laying there for 3 weeks with barely moving. My son was who had break the news to tell me what happened and that my original surgery failed. I wasnt able to fully understand what he meant until a few days after I woke up and was able to finally hobble unsteadily to the bathroom. When I looked in the mirror I didnt recognize myself. I was shocked!!! The next time I went to the bathroom I took a much better look at the new me. It was at that moment somehow my inner strength took over. I realized that no matter what the outside looks like or what other issues I have going on, the inside is still me and there isnt anyone that can ever take that away. I reasoned all people will age and looks will always fade as people get older. So during those long 5+ more weeks I was trapped in that hospital, I prepared myself mentally to deal with my new appearance and how Im still me which can not ever be changed. During that long hospitalization, my son would walk me up and down the halls helping me to regain my strength. I had issues with healing and had a 6" long open "tunnel" that was kinda like a tiny straw that just wouldnt close. I was in great pain which is why I said in a previous post the trach and feeding tube werent fun but I had other bigger issues than those things. I knew they were only temporary and eventually I would be free from them. I had a wound vac that was like a small suction appliance attached to my neck for the unhealing "tunnel" wound to try getting it to heal. That thing ran 24/7 and drove me crazy with a whirring sound right next to my ear, definitely worse than the trach and feeding tube.

When I went home I was still in bad shape! I was very weak and unsteady on my feet. My son was there to help me but left for Marine boot camp only about 3-4 weeks into my going home. Luckily, I had visiting nurses for almost a year after going home, they came every other day to change my wound dressings and to check on my overall health. It was a long 8 months of doing HBO and picc line antibiotics 3x a day. It was a heck of a long road that took me a year until I was almost completely back to my normal self.

What my life is now after almost 9 years of surviving after that Stage IV diagnosis with a very low chance of survival is something I never could have imagined. Ive survived to have so many wonderful experiences. Ive seen my son marry a great girl who I know together they will create a long happy life together, I am a grandmother to 4 children I love with all me heart. I never imagined that being Grammy would be so fulfilling. Those little ones are always thrilled to see me and usually so much fun and well behaved with me. My oldest granddaughter, Savannah just turned 4 on 4/24/18. Even though I wasnt able to continue with my career at Verizon after going thru that huge surgery in 2009, my life now is so much better than I could have ever imagined. Brian not only helped to convince me to seek treatment that third time but he also gave me a reason to get up in the morning by asking me to become an Admin and to speak at OCF events. Ive been so very fortunate to have been able to meet in person some of my best OCF friends Ive made over the years at events all over the US. Brian is a very dear friend to me which I greatly admire. Brian was someone who saw something in me that he knew I would work trying to pass along the things Ive learned over the years to help others oral cancer patients and caregivers. Ive represented OCF in information booths at medical conferences and helped explain patients views to the doctors, nurses, dental hygienists and nurse navigators Ive met. I am dedicated to OCF and making everyone aware of what oral cancer is and how early detection saves lives. Thru OCF, I met some awesome ladies that are casting directors and was part of a TRUTH anti-tobacco commercial. More recently those same amazing women asked to include me in the CDC's Tips From Former Smokers campaign in 2012 doing radio ads. Last year I spent a great 10 days in NY making some of the CDCs latest anti-smoking commercials that are currently playing on all major networks. Do I ever think about how my looks have changed or worry about my health? Honestly Ive adjusted to my new self very quickly. Sure I still face my own set of medical issues every day but in the whole scheme of things.... I am so happy to still be alive!!! All the aches and pains and being disfigured has not been easy. I spend many days feeling pretty lousy and feeling sick but I would not ever go back and change that I opted to go thru with my treatment. Since that surgery, Ive helped thousands of oral cancer patients and caregivers get thru some of the hardest times in their lives. All those people needed someone to help them and I did as much as I possibly could do for them. Even with having a very different life now is ok. Im just so very happy Im still here and was able to finish my most important and biggest endeavor... I survived that third round of OC and was able to continue raising my children to see them become intelligent, kind, productive, and responsible adults.

Marv, I hope you will see that even though things havent turned out exactly as I had expected or planned for, my life is still a very good one. Sure I have my challenges but Im here to fight them and to me its worth it. Living with a disability is definitely not an easy thing to do! Please dont just say no to the surgery without thinking of the whole picture and how much you mean to those who love you. Consider what a great future you can have even if you arent able to be the same as you currently are. Please stop to consider those who are the closest with you and how you would feel if they were the ones who were refusing necessary medical treatment knowing it will save their life. Being different isnt always a bad thing! Im positive you can do so much good in this world no matter what your challenges are. Your future will be changed no matter what your decision. I know plenty of others who have overcome adversity and gone on to live awesome lives despite having some medical challenges. We have someone here who immediately comes to mind... MissKate. If you read her posts you will see how she has been thriving and thats after having a full glossectomy. I know you have it in you to overcome whatever is thrown at you. I wish you had the confidence in your capabilities to step back and take a good look at everything before making the decision to not have the surgery. As I mentioned before, we will support whatever you decide to do about your situation. I apologize that I have temporarily ignored your decision of not having surgery to write this extra long, detailed post that is a plea for you to keep going. I just couldnt get it out of my head that you too can benefit from all those people who years ago encouraged me to keep going and to try before just quitting. I promise to not nag you further, just please at least consider all of your options before making your decision.

Feel free to PM me if you want to discuss this further.
Posted By: Susan2992 Re: Recently Diagnosed - 05-02-2018 07:09 AM
Marv,

Welcome to OCF and very sorry you have a need to join our group. You’ve been given great advice and there isn’t much I can add. As you can see from my signature, I’ve been dealing with oral cancer since 2005 and had my share of problems, misdiagnosis and recurrence. I know Christine personally (remarkable person) and as she stated most people with oral cancer do not have a recurrence and leave this forum once their treatment is done. When I had a recurrence one doctor recommended having most of my tongue removed. I was terrified of that prospect but did schedule that surgery. Fortunately I went for another opinion at one of the best hospitals for oral cancer in the country, and was given the option of a far less invasive surgery. That was in 2010 and I’m still here.

I gave birth to 2 sons without pain medication, but oral pain is IMHO far worse. There are many pain medications that can help you with that. I was on the fentanyl pain patch for many months post-radiation - powerful medication but it does help. Opioids do help and are prescribed for many OC patients. There are many mouth rinses to help numb the pain and help you eat. It is difficult to eat and maintain proper nutrition when you are in pain. I lived for many months on smoothies. A good blender (ex. Vitamix) really helps. I’m also claustrophobic and anxiety mediation did help. The treatment isn’t easy, but it is only temporary. Take a day at a time and focus on the future. This forum is a great resource to connect you with people who have been through treatment before. So ask questions. Wishing you the best!
Posted By: ChristineB Re: Recently Diagnosed - 05-02-2018 11:32 AM
Marv, Susan2992 was there with me in the hospital back in 2009 when I went thru that major surgery and recovery. She sat with me thru some of my darkest days and would check up on me while I was home too. She's someone who helped to encourage me to keep going and Im so glad I did. Thanks Susan!!!!

Susan's correct in advising a second opinion, or third or even a fourth opinion. Going to CCCs where you should encounter the best skilled professionals in the country may help in lessening the amount of tissue removed. In the big picture, the surgeon will have a much clearer view of how much will be taken once hes in the OR and can actually see what they're dealing with.

Posted By: MarvB Re: Recently Diagnosed - 05-05-2018 08:02 PM
Susan and Christine, Thanks for the advice. I did go to another hospital and got a second opinion. They said that, based on the CT scan and the PET scan, 60% removal of the tongue was an optimistic estimate. That it would be more like 80 to 90%. I told them the same thing I told the people at U of M hospital. That I would not have that much removed. They offered an alternative which U of M didn't. They said the could do platinum based chemo along with seven weeks of radiation. He said, because I was stage IV he recommended surgery because that was the preferred option based on conventional medical wisdom but that he had very good success with the chemo/radiation approach. My question is, has anyone on here chose that option and what was the outcome. It seems like everyone I see on here so far who had cancer of the tongue had surgery. I'm wondering if it's because those who didn't have surgery aren't around to post about it or if I just haven't been on here long enough to find those other people. Thank you to anyone who can help.
Posted By: PaulB Re: Recently Diagnosed - 05-06-2018 04:57 AM
MarvB,

One of the country’s top chef’s in the country is in Chicago, Grant Achatz, who had stage 4 squamous cell carcinoma of the tongue about 10 years ago, which his doctors suggested surgery, and possibly others, for his course of treatment, which is nothing unusual. But, this Chef did not want to lose his taste or anything else, so he chose chemoradiation, with approval of his doctors in Chicago, which treatment was unusual. He is cancer free for a number of years.

You can read more about Grant Achatz on-line, and has a book, or two, which I haven’t read, one about his journey. There are many articles on-line, including this on wikipedia.

https://en.m.wikipedia.org/wiki/Grant_Achatz

I hope this helps in your investigation

Posted By: MarvB Re: Recently Diagnosed - 05-06-2018 06:33 PM
Paul, Thank you for the quick reply. Since I posted my question on here, I've seen other boards where people have had the radiation/chemo treatment and are doing well. The more I hear success stories, the more sure I am that I'll take that option. I hope your doing well now and continue to do well. This disease has made me look at a lot of things differently. It's made me rebuild a few bridges I burned and changed many of the things that are important to me. Also, it showed me that people are so supportive and caring. If I get through this I won't be the same person. Thanks again
Posted By: Susan2992 Re: Recently Diagnosed - 05-07-2018 01:17 AM
Marv,

Keep in mind everybody is different. What works for one person may not work for another. Each treatment has side-effects, from minor to severe. Some side effects deminison overtime and others continue and can get worse.

The radiation/chemo treatment is often used to treat HPV+ cancer in the throat area. From what I recall, surgery in this area is more difficult and causes more problems.

In my case, radiation caused me many problems and continues to do so. If I had a “do-over” option, I would have skipped the radiation (it was optional). However, had I done so, I may not be here today.

Have you been to the dentist yet? Someone familiar with oral cancer patients? You may need to have some problematic teeth removed before radiation begins. My dentist recommended removing my wisdom teeth. They will not start RT until the healing is complete (1-2 weeks). Most of us used flouride dental trays before, during and after RT. Also, you should have blood work to check your thyroid levels and testosterone.
Posted By: MarvB Re: Recently Diagnosed - 05-08-2018 04:48 PM
Hi Susan, Yes, both places i went to said I would need to have teeth removed. They've been doing a LOT of blood work on me. I could hardly eat or drink because of pain from the cancer. I lost 13 pounds in two weeks and got so dehydrated my kidneys started to shut down. They finally gave me something for pain. I'm gaining weight now and my kidney function is back to normal. The place that wants to do radiation/chemo asked if my biopsy was tested for HPV. They said if the cancer was HPV related, it usually responds better to treatment. The place that wants to do surgery/radiation had the biopsy and said they didn't test it for HPV because it doesn't make any difference in the success or treatment. They also told me that was the only cure was surgery/radiation.They said radiation/chemo never works except to maybe shrink the tumor. I get such conflicting information between the two and their both cancer treatment centers. The one that said only surgery works and that being HPV related is unimportant is one of the top 12 cancer centers in the nation yet I'm beginning to question what they tell me. Because I get such conflicting information from two supposedly reputable cancer centers, I ask here to get real life info from people who have been through it. Thanks Again
Posted By: PaulB Re: Recently Diagnosed - 05-08-2018 06:28 PM
Hi MarvB,

HPV related head and neck cancer is more specific for the oropharynx, which is different from oral or oral tongue cancer, so much is that they don’t normally do HPV testing in other areas for head and neck cancer, and only for oropharynx cancer. If other areas, small chance, it is HPV related, there is no postive benefit in other areas as seen with hpv oropharyngeal cancer. On a small scale, some oropharyngeal cancers may be a metastesss to the oral tongue, maybe another rarity.

It’s true hpv related (oropharyngeal) cancer treatment is the same hpv related or not, but in “clinical trials” there can be a difference in treatments.

I’m not sure of your cancer, but I was thinking it was oral tongue? Maybe you can clarify this with your doctors, if you want.

It’s true, you have difficult decisions to make, and hopefully you come to a sound decision.

I hope this helps.
Posted By: MarvB Re: Recently Diagnosed - 05-08-2018 09:17 PM
Hi Paul, Thanks for the information. I do have cancer of the tongue. It's squamous cell. An oncologist at one cancer center I went said it makes a lot of difference if the cancer is HPV related on my tongue. The oncologist at the other cancer center said it doesn't make any difference. Both have a lot of years experience and both are well respected. I get different stories from each of them which surprises me. I thought that this was science.
Posted By: PaulB Re: Recently Diagnosed - 05-08-2018 10:54 PM
MarvB,

You’ll find you can get three different opinions from three different doctors!

Most follow the NCCN suggested guidelines for head and neck cancer, if you want to look there for work-up exams, and treatments.

Here are the 2016 NCCN Guidelines. I believe there is 2017 Guidelines, but I can’t print it out. You can join the site, and get the current guidelines if you want.

https://oralcancerfoundation.org/wp-content/uploads/2016/09/head-and-neck.pdf

As far a hpv related head and neck cancer, it’s the only positive prognostic measure benefit seen if its hpv related oropharyngeal cancer. If they want, and think it’s hpv related, they can test the biopsy samples for hpv. I believe they keep the biopsy samples for a number of years, so they still can test it. That’s what testing they do for oropharyngeal cancer as part of the initial work-up.

It does make a difference if the cancer is hpv related, prognasticaly, found in the oropharynx, and not seen elsewhere in a number of reports, but I read ONE report a few years ago of a postive benefit for HPV head and neck cancer found elsewhere.

I hope this helps
Posted By: KristenS Re: Recently Diagnosed - 05-09-2018 01:51 PM
Wow. This is news to me too. Mine was strictly on the tongue, and I mean tongue as we laymen think of it, not as doctors do, and it was HPV+. Now I hear that all that treatment stuff may or may not have mattered and doctors were telling me I'm gonna be fine because of the good prognosis when that may not be the case? Sheesh. No wonder some of my supposedly good doctors seem so flaky lately. (And no, there was no spread elsewhere, not even lymph nodes, though it did recur in the same area.)

Gah.

You have all my sympathies, for sure, Marv. It's a crazy ride no matter what answers you get.
Posted By: ChristineB Re: Recently Diagnosed - 05-09-2018 04:57 PM
From what I remember thru discussions with HPV+ patients/info gained from Brian Hills expertise, and posts here, HPV+ OC is found 95-99% of the time happening in the Oropharyngeal area. Its very rare for HPV+ OC to be found in any other area like the front or sides of the tongue. Basically the oropharyngeal area consists of pretty much anything in the back on the mouth, the area past the molars which includes the base of the tongue/tonsil area . For base of tongue OC, its not able to be seen without using scopes or other tests to examine that area making it more difficult to diagnose. Plus just like someone who was diagnosed with OC from smoking, many patients have only very mild symptoms that often are not recognized to be a sign of having cancer. As a patient, I would not think a bit of a sore throat was anything serious or an earache could be a sign of cancer. Kristens HPV+ OC is very unusual with her tumors location. Off the top of my head, I cant think of anyone else who had their tumor located outside of the oropharyngeal area.

Thru donations to our small nonprofit (with a worldwide presence) , OCF helps to fund HPV research right from the start. We have, thru Brians forward thinking, helped fund research thru our donations to a young research doc, Maura Gillison's studies. Dr Gillison has been working on HPV for over 15 years and has brought out most info of what we know today about HPV. Even with so much learned about HPV, there is still so much more that is unknown.

As far as I know, at this time regardless of if the tumor is HPV+ or HPV-, treatments still are the same. There have been studies done to see if HPV+ patients can lessen radiation treatments without impacting the patients outcome and odds of having a recurrence. I do not know what the outcome was or if it still is being worked on. Considering its a fairly recent study the long term effects probably wouldnt be available yet. What makes being HPV+ something positive is patients that are HPV+ have less of a chance of having a recurrence. But...(there always has to be a but), if the patient was a smoker that changes everything. Patients who are HPV+ and smoke or are former smokers have the same odds or recurrence as those who had smoking cause their OC. The long term prognosis probably isnt available for this group either. I have known several other patients who have been HPV+ and were nonsmokers but still have had recurrences.

Always remember what works for one may not always work so well for others. For patients who do not have being a medical professional in their background, often have a hard time figuring everything out. All these things can be very confusing to patients and caregivers and thats not even talking about the medical jargon which for most is like a different language. Doctors usually use the guidelines Paul mentioned to determine what the best course of treatment should be. There are so many variables to factor in and of course the "everybody is different" also should be considered when trying to understand how a particular patient should be best treated. The treatment protocols are like big flow charts with a different treatment plans for patients who have different things going on. Along with the treatment guidelines, theres the CCC's tumor board meetings as well. At the tumor board meetings, all the specialists give their input and discuss each case to create an individual treatment plan where all the specialists feel it will be the most beneficial one for each patient. Patients can attend the tumor board meetings and should voice their concerns at that time to help make their treatment plan one that the patient understands and feels is best for them. I know its not easy making these difficult decisions. No matter which path you select we will try our best to help you thru it.

Posted By: KristenS Re: Recently Diagnosed - 05-09-2018 05:03 PM
Thanks, Christine, that was very helpful for me! Mine was particularly odd, as it was the atypical painful sore that I found myself first rather than the odd thing a dentist or someone else sees first. (Which is partly why no one expected it to actually BE cancer...) Ah, well, I do enjoy being a medical anomaly ... story of my life. smile Maybe it helps them find answers for somebody else.

This is a GREAT forum.
Posted By: MarvB Re: Recently Diagnosed - 05-12-2018 04:10 PM
I spoke to a third oncologist. He said that recurrence is different with HPV related cancer at the base of the tongue but that they have seen no difference in recurrence if it's on the front (other than the base) of the tongue. He said treatment is the same whether it's HPV related or not. What he's saying goes along with most of the things I have read. Also, my idea of avoiding surgery and just having chemo and radiation doesn't seem like a good one now. One of the radiologists I talked to contacted oncologists at Karmanos Cancer Center in Detroit, Johns Hopkins and the Mayo Clinic for their opinions. The guy really put an effort into getting an good answer. Bottom line they all said that chemo and radiation vs surgery and radiation wasn't even a close call. That surgery followed by radiation is by far the best chance for sucess. They did say that, if the tumor is removed surgically and clear margins are not obtained, then chemo and radiation has a good chance of success. I asked if radiation/chemo to reduce the tumor, followed by surgery would be a way to reduce the impact of the surgery. They said that the radiation does so much damage to the tissue that surgery afterwards becomes much more complicated and, in some cases, impossible. I'm putting this out there in case anyone else is trying to make the same decision I was. Hopefully it helps.
Posted By: MarvB Re: Recently Diagnosed - 06-09-2018 08:15 PM
I made the decision to go with surgery and, at least so far, I'm glad I did. On May 17th I had about 60% of my tongue removed along with lymph nodes on both sides of my neck. They estimated that they were going to have to take more than that.I'm glad they were wrong. They got clear margins which made me very happy. One lymph node was swollen but showed no sign of cancer.I spent five days in the hospital, followed by a little over two weeks in an extensive care facility and now home. The extensive care facility was the only place around who would accept patients with trach tubes. I've been home for three days and just had my trach and feeding tube removed yesterday and started eating by mouth. I've lost almost 30 pounds in those three weeks because I couldn't tolerate the food they were giving me. Hopefully that trend will reverse now because I have radiation coming up. I don't need to lose more weight. One of my vocal cords was damaged but they said they can fix it if it doesn't heal on it's own. I only talk in a loud whisper because of the vocal cord but most people are able to understand me quite well. I'm pleasantly surprised at me enunciation. Gs do give me some trouble but I'm getting better with them. The scars on my face and neck are getting hard to see already. I know radiation could change things but right now, I'm happy with my progress. If someone had ask me how I was doing even a week ago, I would have said horrible and, at that time I was wishing I had just let the cancer run it's course. For anyone who is facing the same thing I can tell you, it's a really rough first few weeks. Brutal would be a good description. But, hang in there. Just as fast as it can move in a negative direction, it can start moving in a positive direction.
Posted By: gmcraft Re: Recently Diagnosed - 06-09-2018 10:24 PM
Your positive attitude towards your treatment is a big factor in how you feel. I’m glad you sound like you’re doing well. Do find a way to boast your calorie intake now before you start radiation. You will need all of the weight you can put on. Do you know if you will be getting a feeding tube prior to radiation starting?
Posted By: ChristineB Re: Recently Diagnosed - 06-10-2018 10:54 AM
I was just wondering about how you were doing, Marv!

Sounds like you have just started doing better. Im very surprised the feeding tube was removed after losing 30 pounds so quickly and your upcoming radiation. Losing weight during this is NOT a good thing, even if you have weight to lose its best to keep your weight stable. Ive also lost considerable weight in a short time and Ive found out it wasnt just pounds I had lost, its muscle too. Do your very best to get the most calories every single day that you can. Usually the daily minimums are 2500 calories and 48-64 oz of water. Because you lost so much weight so quickly you will want to increase your daily calories to 3500 a day to help build your body back up. Eat all your favorites as much as you can so you dont go into rads having cravings.

Best wishes with a speedy recovery!!!
Posted By: MarvB Re: Recently Diagnosed - 06-23-2018 03:08 PM
Well I have started gaining weight since I was taken off of the feeding tube. I found some stuff called Boost VHC (very high calorie). It has 530 calories per 8oz serving and it doesn't taste bad. I add a couple of heaping spoon fulls of Malted milk and a half of a banana to it and blend it. I have one or two a day along with other meals. I would recommend it to anyone who want to put on weight. You can get it online at the Walmart site. I'm still on soft foods. My tongue is still swollen and it's hard to move solids. Also, I find I can't swallow nearly as hard as I used to. I have to wash the food down with a drink of water. The more solid it is, the more often I need the water to wash it down. Has anyone else had this problem? If so I would like to hear suggestions on improving it.

My incisions are healing very well including the donor site. I do still have a lot of swelling on one side of my neck and both sides are hard and numb. It's been a little over a month since surgery and I'm beginning to wonder if it will ever go back to normal size. As for the numbness, the surgeon said it may or may not go away. He told me to massage the swollen area but when I do I get terrible pains in my ear. Just touching that area of my neck will cause the pain, not in my neck, but in my ear..

I had a mask made and start radiation in less than a week. I'll have six weeks of intense radiation because of the one swollen lymph node and because there was cancer in the nerve under my tongue which was removed. I'm finally making progress and fear that a lot of it will be erased because of the radiation. The radiologist said that they aren't going to put me on a feeding tube unless I start losing too much weight. Then, they will only use a nasal tube. They won't give me the PEG tube which I would prefer. From what I have read, people use the feeding tube sometimes for months because of the pain and because of the change in taste.The radiologist and the oncologist said they don't like to use PEG tubes because it's more invasive and because people are more likely to become dependent on them and just quit eating. They said having a tube hanging out of their nose makes people want to go back to eating on their own sooner. I don't like the idea of going out in public for months with a feeding tube hanging out of my nose when there is a good alternative and plan to eat as much and as often as I can no matter what kind of tube I have.. I might have to have a discussion with them.

If anyone has some suggestions on things to do to help minimize the negative effects of radiation I would love to hear them. And thanks to everyone for their support.
Posted By: gmcraft Re: Recently Diagnosed - 06-23-2018 06:29 PM
At this point, it may be hard to put in a feeding tube as you have to swallow the line. A nasal tube works well too. Just keep doing your swallowing exercises all through the radiation — even If it means dry swallows. It can make a world of difference.
Posted By: KristenS Re: Recently Diagnosed - 06-23-2018 10:43 PM
The tube I had was straight to the stomach, no swallow of tube necessary. Because I already had feeding issues prior to cancer, we went for it (not happily) due to doctor's suggestion. It turned out to be absolutely necessary for me. And if you're stubborn, it's not likely something you'll want to become dependent on ... you have to really limit your physical activity and what positions you rest in, just to not dislodge the thing. It's NOT 'fun' whatever that doctor may think, and certainly not an easy way out. (I may have been further inspired by not tolerating the formula well, sigh.) But yes, whatever you do or don't have, keep up the dry (or water) swallow exercises ... that speeds the recovery.

You do what YOU need ... you have the doctor's recommendation, and that's good, but you know you and your perseverance and your food abilities.
Posted By: MarvB Re: Recently Diagnosed - 07-13-2018 03:32 PM
I had surgery on May 17 to remove abut 60% of my tongue and the lymph nodes in my neck. I had very clear margins and the cancer had spread to one lymph node but it was still intact. The part of the tongue I have remaining has been painful. It was understandable right after surgery and it did subside. Then, about three weeks ago, it started hurting again, progressively got worse and started to swell. Different doctors checked it when I complained over time but said I was just biting it. After a week into radiation, it got so bad I could hardly wear the teeth guards due to the pain and couldn't eat very well. They had to put the feeding tube back in. I told them no more radiation until they did a CT scan. They did it and found what appeared to be a tumor. I had a biopsy done four days ago and it turns out that it is cancerous. It's grown to almost one inch by one inch in size and is in the back of my old tongue and extends into my graft tongue. The surgeon who did the biopsy (also the one who did the hemiglossectomy) said he could operate but wouldn't recommend it because of the location and the quality of life I would have if he did. He explained what functions I would have left and I agreed with him. I asked him if there were any good alternatives. He said just chemo and radiation to try to shrink it and buy more time. He couldn't find any clinical trials that I would qualify for. My wife asked him how long I would have if they couldn't shrink it. He said maybe two months. So, to anyone who has this done, if you have pain that doesn't subside in a short time, push the doctors to do a CT scan. If the catch it early enough maybe you won't be in the position I find myself in. I meet with a radiologist and and oncologist in four days to discuss the proposed plan and the chances of success. At this point, I don't have much hope.
Posted By: gmcraft Re: Recently Diagnosed - 07-13-2018 04:46 PM
Marv,

First of all, I’m very sorry that you have had bad news. It’s hard to be told that the cancer has returned when you’ve already been through so much.

When my husband’s metastasis was diagnosed, six months after he completed radiation and chemo, he was given six months. Then the possibility of an immunotherapy trial came up, so he was one of the first patients to get the PDL-1 treatment. When that did not work, a second trial had opened up and he went on that. In all, his life was extended by one and a half years. During that time, a interventional radiologist found a new way to open up his esophagus, which had been closed by scarring after radiation. Eventually, John succumbed to pneumonia because he had developed silent aspiration, not cancer. What I’m trying to say is, advancements in cancer treatment can come at any time, so don’t lose hope just yet. But you would like to be included in trials, you must let your medical oncologist know now, so they will keep you in mind. The NCI has a page where you can find out about new clinical trials. You can sort of register and you’ll get notification when a trial for your type of cancer comes up. Do understand, though, that clinical trials can be tough to go through, depending on which stage the trial is at. John’s PDL-1 trial was a Stage 1 trial which meant that the medication had only been tried on monkeys before John got into the programme. The question, of course, is, if you are willing to risk that. You would also do well to discuss these issues with your wife before you see your doctors in a few days’ time.

I don’t know what kind of surgery your doctor said he could do, would it be a total glossectomy? If so, you may want to look at the posts by a member by the name of TammyK’s (I may have got her last initial wrong, but I’ll look it up and repost) Her husband had a total glossectomy and Tammy writes about what they went through in some detail.

Head and neck cancers are a tough fight. The researchers and doctors are working hard on them, so don’t lose hope as yet.
Posted By: gmcraft Re: Recently Diagnosed - 07-13-2018 04:49 PM
The name Tammy uses on the forum is tamvonk..
Posted By: MarvB Re: Recently Diagnosed - 07-13-2018 05:20 PM
Hi Gloria, I'm very sorry to hear about your husband. This type of cancer is brutal to the people who get it and the people who love them. Yes, it would be a total glossectomy. Because I've experienced the limitations of a semiglossectomy, I know I don't want to have the limitations of a total glossectomy. I wouldn't give up more than I already have. I'm not afraid of dying. I'm more afraid of living a life I don't enjoy. I'm sure there are a lot of people who disagree with me but each individual is different in what they will accept for quality of life. Thank you for the information about Tammy.
Posted By: ChristineB Re: Recently Diagnosed - 07-14-2018 12:39 AM
Marv, one of the most inspirational people here is misskate. She has overcome the difficulties of a total glossectomy and is thriving. Heres a link to her profile where you can easily read her posts.

Miss Kate's profile/list of posts
Posted By: MarvB Re: Recently Diagnosed - 07-17-2018 07:08 PM
Carol,

I got a second opinion on surgery and it was about the same as the first. They both said they would not recommend surgery due to the location. The second surgeon described the surgical procedure required as morbid. He too said radiation and chemo were my best options. I then talked to a radiologist and an Oncologist also and they said the same thing. I had a new mask made and they're going to redirect the radiation to focus on the new site. I'll also have three sessions of Cisplatin scheduled. They're eight hour sessions. Three hours flushing my system, two hours of chemo and three more hours flushing my system. It's to help prevent kidney problems and reduce nausea.

If I do nothing or the treatment doesn't work, one doctor gave me about two months. Another gave me up to six months. I always thought if I heard something like that I would go out and do all the crazy things I wanted to do but hadn't. Instead I find that all I want is normalcy. I don't want excitement. I don't want adventure. I just want my normal, everyday life back. Anyway, I'll post my progress for at least the next two months. It's up in the air after that.

Thank you everyone for your suggestions
Posted By: ChristineB Re: Recently Diagnosed - 07-17-2018 11:26 PM
Marv, when do you begin rads? Im sure you have read things here about rads and chemo treatments. Many patients run into difficulties due to their ability to eat and drink being compromised due to mainly sense of taste changes and mouth/throat pain. I'll be honest... its no picnic but it is doable. Focus on what is within your control, take meds to manage any pain and nausea. Most important is to make your intake top priority. Every single day from now thru you hit your first year post rads, your daily minimum needs to be at least 2500 calories and 48-64 oz of water. If you can push yourself and hit 3000 calories and 64 oz water daily that will help to make your experience having rads and chemo as easy as possible.

Theres drivers available who can help get you back and forth to your treatments thru the American Cancer Society's volunteer driver program. Going thru rads/chemo can take alot out of a person. The American Cancer Society (ACS) has volunteers who are former cancer patients or their caregivers to staff the driver program. I used it myself a couple times and couldnt believe the kindness of the people who drove me 45 minutes each way to my appointments. Plus they drove 45 minutes up to pick me up and then another 45 minutes back to their house. I was so impressed at the kindness of strangers that I became a volunteer driver too once I recovered from my own bouts of cancer. I had a favorite client, a little tiny elderly lady who was as sweet as could be even though she was going thru some very difficult times. Even if you have a driver 2 days a week, it helps make things easier for you and anyone you have helping you. It requires some paperwork to set you up with a volunteer driver so if you are interested you may want to give the ACS a call or check out their website. There's also another program the ACS has to help patients with prescription medicine co-pays and/or transportation costs. The ACS will give up to $300 to cancer patients to help cover transportation expenses or co-pays at the pharmacy. I dont know if you need this or not but to me at the time it was a much welcomed break to help me make ends meet a little easier during a rough time for me and my children.

Just always remember, we are here to help you. I understand part of what you are going thru. I was facing very low odds of survival in 2009. As a single mother I was completely devastated constantly worrying what would become of my children if I did not survive. I remember how hard this was to accept and know your situation is not easy to manage either. There should be some professionals at your treatment center that specialize in helping patients to mentally work thru serious medical challenges. It cant hurt to ask about what is offered and go for a couple appointments to see if it works for you. At OCF, we have seen all kinds of different situations and know first hand how difficult oral cancer can be not just to get diagnosed with but to get thru treatments and recovery phases as well. Definitely NOT easy for most of us. Its ok to vent, rant, rave, etc. We're here for you, its ok to lean on us. We have gone thru similar battles ourselves and have some insight as to how mentally difficult this is to handle.

Hang in there!!! Wishing you all the very best with everything. Please let us know if there is anything we can do to help you.
Posted By: MarvB Re: Recently Diagnosed - 07-18-2018 02:16 PM
Hi Carol, Thanks for the words of advice and encouragement. I'm having a PEG tube put in tomorrow. Three weeks ago I was at a point where I could eat semi solid foods and was able to speak and was pain free. Now,because of the pain and swelling in my tongue from the cancer, I can only down liquids and can't talk. If the pain or swelling increase much more, I won't be able to even down liquids.It's to painful to move my tongue even with the strongest pain meds I dare to take. I tried using lidocaine directly on it but that just seems to upset it. So, I've regressed quickly in the last three weeks. Now, from the time I wake up, the only thing I look forward to each day is going back to sleep at night. It's the only way I can escape the pain for a while. I load up on the meds I'm on that cause drowsiness just before I go to bed to help me sleep..

I restart radiation and start chemo on Monday. There is a team of doctors and specialists there to help me. My wife drives me back and forth, which is about an hour and a half each way. She has been there even when I could drive myself. I have a great support system. But, I'm sure there are other people on here who feel the same way I do. That this is a lonely journey no matter how many well intentioned people you have around you. They can be there for you but they can't be there with you. Only you know what it feels like and only your life is at stake. That said, it would be much more difficult without support. For some reason, it bothers me when people smile and tell me I'm doing great and that I'm going to beat this. I'm not doing great and,based on statistics, I probably won't beat it. I don't say that because I'm down. I say it because it's true. I deal with best when I face the truth. Seems like a lot of people deal better in fantasy.

Thanks again,
Marv
Posted By: MarvB Re: Recently Diagnosed - 07-18-2018 08:35 PM
To anyone interested I'm not advocating that anyone do this but it's something that worked for me. The cancer pain on my tongue doesn't respond well to most pain meds. I use lidocaine on it directly, which works but only for a short time. If I swallow it, it also numbs my throat which I don't want. I'm in a state where I can use medical marijuana. I watched a YouTube video by Rick Simpson who said to put THC oil directly on a lesion for pain relief. I got some THC oil and tried it. It works better than Lidocaine and lasts longer. Just a little drop is enough to keep the pain away for about 4 to 6 hours. It is also good to increase appetite. Unfortunately, it will get you high so I only use a little at a time except in the evening. Then I take more to kill the pain and it helps me sleep. It's made my life more bearable by decreasing the pain throughout the day.
Posted By: KristenS Re: Recently Diagnosed - 07-19-2018 01:29 AM
That's good information, and, honestly, given the stress you must be facing, who cares if you get a little high? (I don't say that lightly, but I figure, if anybody merits a little stress relief right now, you do!) I've been admiring your courage and your attitude to face the worst. Don't give up ... please! ... but I like your spunk, and I too hate platitudes that are said more to cheer up the speaker than the recipient. (You get stupid ones like that when you have a miscarriage, too. It's a wonder I didn't do anything to get hauled up on assault charges during that season... )

Thank you also for keeping everyone posted. Forgive me if this sounds cliche, but you're a brave man. I'm going to keep rooting for you, whatever happens. I don't think you're anywhere near my area (hard to scroll back and see while typing), but if you happen to be in north Alabama, and need more support as time goes on, let me know. Even if I can't help, I can certainly make calls and find folks who can.

(And now I see you are in Michigan, not sure how I didn't see that, sorry.)
Posted By: MarvB Re: Recently Diagnosed - 07-20-2018 05:28 PM
Hi Kristen, Thanks for the compliment but I don't see myself as brave. Being brave would require having the opportunity to run from a situation and not running. I don't have that option so I see myself as someone put in a bad situation with no promising way out. I just picked the option I thought gave me the best chance for a somewhat normal life.

I know what you mean about things people say. I think the one that bothers me most is when they say "I know what you're going through". Another is' We're going through this with you". I know they're probably well intentioned but it still upsets me to hear it. That probably says more about me than them.

So, you live in Alabama. It's one of our favorite states. For the last three years my wife and I spend some of the winter months in Gulf Shores. Last year, we divided our time between Sarasota, Fl and Gulf Shores. We planned to go back to both places this year but that isn't looking too promising at this point. However, we haven't cancelled our reservations on either of the condos yet. Things could turn around.

Again, thanks for the words of encouragement. I hope things are going well for you. I can see that you've been through a lot.

Marv

Posted By: tamvonk Re: Recently Diagnosed - 07-21-2018 08:39 AM
Hello Marv,
I'm the Tammy who Gloria mentioned. My Husband Kris has had a total Glossectomy, coupled with a total Laryngectomy. So a double whammy. His surgery was in March 2012. We were told he would be dead within 12 months if we chose not to do the surgery. Kris is alive and well with NED. Would we do this all over again ? You betcha. Life is good. Truly, it is. Kris swallows all his nutrition, although it is in liquid form. He speaks. People without their tongues can speak. Kris manages speech without both a tongue and voice box. He is fit and active. We travel - with blender. Long International flights are no problem.
Best of all , Kris has been here to see all our Sons grow up. We now have 2 little Granddughters he adores.
Life is certainly very different from what we imagined, but it is good. I have met a suprising number of others who have also been through this surgery. All lead good lives.
Here to answer any questions you may have Marv.
Tammy
Posted By: MarvB Re: Recently Diagnosed - 07-21-2018 04:41 PM
Hi Tammy, I have to admire your husband. He certainly has been through a lot. I'm glad to hear that he's leading a good life now. He deserves it after what he's been through. I'm not sure what is different about my situation but, when two oral surgeons from different hospitals say they wouldn't recommend surgery and that they would not do it themselves, it makes me leery about the end results. As far as a total glossectomy, I thought that I might end up with one when I had my surgery and I agreed to it. And that was with one of the surgeons who recommended against this. I ran into another guy in radiation that had 11 years of being cancer free after having 60% of his tongue removed. His cancer came back and his surgeon recommended against surgery for him too. It was a surgeon I never heard of. His situation sounds just like mine ( location, depth etc. of the tumor) except for the 11 years of being cancer free. So, at this point, I'm going with the recommendation of the two surgeons and an oncologist. I have a PET scan in less than a week to see if it's spread. I can tell by how it feels that it's growing quite rapidly. It's starting to cause a lot of swelling in both sides of my chin and neck. It changes almost daily. To get to stage 2 in within 4 weeks of having clear margins is amazing to even the doctors.

Again, thank you for reaching out to me. It's nice to hear a positive come out of this type of situation.
Posted By: tamvonk Re: Recently Diagnosed - 07-22-2018 10:32 AM
Marv where are you being treated? Are you at a major Comprehensive Cancer Centre? For us it came down to "do you want to live? Or not? Then it became a simple decision. I do not see how a Dr at a local centre or anywhere else can decide on your quality of life. Quality of life is what you make of it.
I urge you to get another opinion from a CCC. These hospitals are at the cutting edge of treatments. They see hundreds of oral cancer Patients each year. Unlike the local hospital which only see a handful.
Christine mentioned Miss Kate. Her quality of life is fantastic. She works and has had 2 children since her surgery. We have mentored a number of other patients through successful surgery and adaption to their new life.
Has immunotherapy been discussed? I have seen others respond remarkably to this and remain disease free.
Marv, I encourage you to rethink "quality of life". Seek out that surgeon at a CCC who can help you.
I also totally respect that the decision is yours. Just wanting to help you see options.
Tammy
Posted By: Kristen S Re: Recently Diagnosed - 07-23-2018 01:51 AM
Hi Marv-

I've been reading your posts and my heart goes out to you. I was Stage 3 SCC and had my surgery this past Feb. 2018. 2/3 of my right tongue was taken out and the grafting to reconstruct the tissue was taken from my arm and my leg. I've just started PT because I still can't straighten my arm where the grafting was done. I finished 35 rounds of rads in the middle of June but decided NOT to do the Cisplatin. Making that decision was difficult but I feel good about it. The rads were very difficult come Week 6 and 7. Tired, worn out and couldn't eat via oral cavity anymore. That bummed me out. Going each day for the rads gets to be so tedious. But you do it!!! Not a day went by that I didn't cry over something. Unfortunately, I don't have great support from my husband but do from friends and neighbors. I have a strong faith and I've asked God multiple times to take me to Heaven throughout this journey. I went through anxiety, depression, loneliness and fear. What kept me going....my faith and my daughter. I started journaling and really looking at keeping my soul happy. I gave myself permission to heal and lots of time to rest w/o feeling guilty. I am almost 5 weeks post rads and still struggle with the healing on a daily basis. Some days I get a tiny glimpse of what my life was like before all of this and then other days I can't believe that I'm still so far out from feeling normal. I don't know if I will ever feel normal again- I don't think so. It'll be different.

I have a PEG tube that was inserted at my hemiglossectomy surgery and I still use it multiple times a day 5 months later. This is what has kept me alive! I cannot imagine having the pain and discomfort that I do and trying to eat solid foods. Great nutrition is the key to healing!

I'm glad you posted the information about the THC oil. I live in a state where marijuana is legal and I tried some during and after radiation. Unfortunately, I used the vaporizer pen and it didn't feel good to inhale. Bothered my mucosal tissues and tongue. But after reading your post about the hemp oil, I think I'll try that. For some reason, I keep biting down on my native tongue (mouth is not used to shape of new tongue!) and opiates don't always seem to help the pain. Sometimes, as I'm falling asleep all of a sudden I'll be jerked awake by the pain! It's so frustrating!! And I don't even remember biting down on it! So annoying!!! I know it's happening though as I can see the imprint of my teeth on my native tongue. Question for you though- are you using 100% THC oil or CBD? I've read that the CBD oil can give you the analgesic you want but w/o the feeling of being high. What's your experience?

I had to empathize at your comment dated 7/18 about "people smiling and telling me I was going to beat this". It's so hard, I know. My husband would say, "This is really hard for us to watch you go through this." I had no sympathy for him but that's another story. Can't compare to the actual person going through the treatment. I have a friend who is a retired oncology nurse and she said that the only treatment more difficult to recover from is anal cancer. I keep that in mind!!

Fight for you. Give treatment a chance and think positive! I'm happy that you're giving it a shot. Praying for you.....
Posted By: MarvB Re: Recently Diagnosed - 08-01-2018 03:00 PM
Hi Tammy,

Just an update on my situation. I had the PET scan. It showed that the tumor had grown in the floor of my mouth and in my tongue and it looks like it may have spread to some of the lymph nodes still left in my neck. It's amazing how fast it grows. I had heard that radiation attacks the fastest growing cells first so I asked the radiologist if, since it was growing so fast, that meant the radiation might be more effective on it. He said medical data didn't support that theory. He suggested increasing the radiation dosage even more, extending it by a week and doing three doses of Cisplatin. I asked him what my chances were. He said poor. I asked how long I had if it didn't shrink the tumor. He said maybe a few weeks after treatment was done but that I should talk to the oncologist about that. In other words, if he's right, hold off on planning Thanksgiving. I have an appointment with an oncologist next week. I am going to try to get through treatment but I may be just wasting precious time. I guess I'll find out.

Thanks again for sharing your experience with me.

Marv
Posted By: gmcraft Re: Recently Diagnosed - 08-02-2018 12:51 AM
Marv, I feel better for you that you’re going to go through treatment, come what may. One never knows. If they are arebgoing to increase the radiation, be prepared to be very fatigued and the mouth to be really dry and sore. Watch out for fevers as they can indicate infection and any swelling in the legs (that may be deep veined thrombosis) my husband got it in both legs. Your Ro should immediately refer you to the thrombosis clinic, or if you are at home, go to the ER ASAP. For some reason, cancer patients get DVT fairly frequently. That’s from our medical oncologist. Stay the cots, we are rooting for you.
Posted By: tamvonk Re: Recently Diagnosed - 08-02-2018 06:40 AM
Marv, I'm so saddened to read your update. Sadly it seems some HPV tumours are extremely aggressive and just don't respond to radiation and chemo.
I guess we were lucky in that as soon as the recurrence was found we moved very quickly to salvage surgery. I'm sure that is what saved Kris's life. Our initial reaction to total glossectomy and total Laryngectomy was " no way". But it has saved Kris's life and we are both grateful.
I wish you the best as you go through radiation again.
Tammy.
Posted By: MarvB Re: Recently Diagnosed - 08-04-2018 11:53 PM
As you know. cancer, and especially this type, is very difficult to deal with. And, I hate that my wife has to go through what she's going through. I hear her crying when she doesn't know I can. The symptoms that led me to think the cancer had returned are increasing even with the chemo and radiation.I don't think there is anything that can stop this stuff. Late last week I encountered another problem.that may stop my treatment. Because of the return of the cancer, my tongue swells to the point where it now sometimes extends out beyond my teeth. When I lay on my back for radiation, it closes off my airway. They said they could put in another trach but I told them no. With the chances of the treatment working being so low, I don't want to keep getting procedure after procedure. I talk to the oncologist on Monday to see what he has to say but I don't expect any good news. Seems like around every corner is a new problem waiting. Thank you for your replies.
Posted By: Basketcase60 Re: Recently Diagnosed - 08-05-2018 12:51 AM
Thank you so much for this post. I have been recently diagnosed and am very very scared. Your post gave me hope.
Posted By: gmcraft Re: Recently Diagnosed - 08-07-2018 05:45 PM
MarvB, l’m sorry your wife is having a hard time. It is sometimes hard for caregivers because one feels so helpless. I don’t know how many radiation treatments you’ve had, but is it possible that the swelling in your tongue is a reaction to the radiation since edema is a side effect? Head and neck cancer is tough, my husband had dehydration, developed deep vein thrombosis in both legs to the extent that he was unable to walk for a time, as well as swallowing problems. It was, indeed, one thing after another. We (I include both John and myself because I wanted to fight the battle by his side) persisted. I was very conscious that we needed to make new memories. It brought us a whole year’s extra time and I dare say it could have been more if John had heeded the advice of the speech and language pathologist diligently. In that time, immunotherapy went from a Stage 1 trial to being marketed. Although it did not help John, I’m proud of the fact that we contributed by taking part in the Stage 1 trial. John saw a therapist all that time and I would like to think that he got the support he needed to go through some of the more harrowing moments during the treatments. I hope what I am saying can help to give you a slightly different perspective. I have you and your wife on my mind,
Posted By: MarvB Re: Recently Diagnosed - 08-08-2018 02:48 PM
Gloria,I'm very sorry to hear that your husband lost his battle with this stuff. Oral cancer is a very unforgiving disease. I write this as I'm getting ready to try go for today's radiation treatment. My tongue is once again swollen which may cause me to miss another treatment. The radiologist told me that every day I miss treatment, the treatment is less effective. I didn't get to see the oncologist like I was told I would. When we got there for the appointment they told us it was made in error and that I couldn't see him until treatment was completed. Since this is my first time at this I don't know if that's standard procedure, but it doesn't sound right to me. I've only met him once. I've decided to complete this radiation/chemo treatment process. I don't think it's going to do any good and neither do the doctors. but, I can't get into a clinical trial unless I do.

Medical marijuana is legal here so I've also decided to try something called Rick Simpson oil**** along with my other treatment. It supposedly cures cancer. It's expensive to make and you need to use twice as much if you've had chemo and radiation but, If it helps, it's worth it. If anyone else out here has tried it or knows someone who has, I would like to hear from them.. I know a lot of pot smokers through the business I was in (no, not a drug dealer) and it may be a coincidence but I don't know of one of them who has cancer. Maybe because cancer cells are fast growing and there is nothing fast about a pot smoker. smile

Well I'm hoping for one step forward today and hopefully none back. This is an emotional and physical roller coaster. I admire the people who have the strength and courage to really fight it. And, I admire the people who are at their side when they do.
.

Marv

***** ADMIN NOTE ****** Anyone who wishes to continue a conversation with Marv about the Rick Simpson oil or other things which are not scientifically proven, please do so only by private message (PM). Our rules (which every member agreed to abide by...twice!) include a strict policy about discussing unsubstantiated medical claims on our public online message board. If anyone needs help using the PM function, please ask and we will teach you to how to use the PM function.

Posted By: ChristineB Re: Recently Diagnosed - 08-08-2018 04:56 PM
Marv, please be wary of anything that claims to cure cancer!!!! The only scientifically proven ways to eliminate cancer are surgery, radiation with or without chemo and some cancers will respond to chemo by itself (unfortunately not oral cancer). There are wayyy too many unscrupulous people getting rich from selling things that are not beneficial to cancer patients. I think people who do that sort of thing are absolutely disgusting! They're the lowest form of a human when first thinking about lining your pockets by taking advantage of people who are very ill. Upon a quick google search I found varying pro and con articles. I suggest for your own safety to first ask your doc about using anything extra while going thru treatments. Some things as simple as certain vitamins can interfere with the effectiveness of cancer treatments. I know you have some issues with having access to your physicians. Hopefully you will be able to see your doc soon. When I went thru rads with chemo, I saw my radiation oncologist once a week to give me a thorough exam and review the weeks treatments. My chemo oncologist I saw every 2 weeks. Im sure you must be seeing your nurses most. Make sure to relay any issues and/or questions you have thru your nurses.

Hang in there, we are here to help you as much as possible. One day at a time and step by step.
Posted By: MarvB Re: Recently Diagnosed - 08-09-2018 12:01 AM
Hey Christine, Yea, your experience with an Oncologist is what I've heard from other people. I'm not sure why mine is being so elusive. Thank you for the warning, but Rick Simpson doesn't sell the oil. He used to give it away until the Canadian Government got after him. Now, he just tells people how to make it and doesn't charge anything for the advice. The expense involved is in the amount of pot it takes to make it. He doesn't sell that either. I could legally grow it but that takes time. The oil itself is just diluted down marijuana of a specific strain. I've never heard anyone overdose and die from marijuana. I was never a marijuana user.until I got the cancer. Now I use THC oil for appetite and pain and CBD oil for pain and to relax me. They do work. The Rick Simpson oil is just a very high concentrated version of those two extracts plus other cannabinoids that are in the plant..The worst thing it can do to me is get me high. I'm not thinking of taking it in place of the radiation/chemo but in addition to. I would like to know if anyone else out here has tried it as a cure. The way my radiation is going I need an alternative. I missed another dose because of my swollen tongue blocked my airway. One of the ladies doing the treatment ran out and got the mask off. She said she could see that I was turning blue. They're looking for alternatives to me being on my back.
Posted By: ChristineB Re: Recently Diagnosed - 08-09-2018 02:13 AM
Arent the techs able to move the table so you are laying more on a slant than flat? The radiation machines can move all kinds of ways to get the best position for your treatments. Im guessing laying on half of a 45 degree angle (22.5 degree angle) would be easier on you than the regular conventional table position.


PS... Marv, I dont always comment on your posts but I do read every single one of them. I marvel at your ability to face head-on everything you are dealing with no matter what gets thrown at you. Most people wouldnt be able to handle even half as much as you. I greatly admire your courageousness and perseverance!
Posted By: MarvB Re: Recently Diagnosed - 08-09-2018 01:38 PM
Hey Christine, they suggested making an appointment to elevate the machine to the maximum and have a new mask made, I asked them why we didn't just elevate the machine I was sitting on to the max and seeing if it was going to work, especially since my tongue happen to be swollen and that's the only way we would know. They did and it didn't work. They said another alternative might be to lay on my stomach but the dose wouldn't be directed as accurately as if I was on my back. After I got home I started to think it through.and, in 16 treatments, I've had to miss three because of my tongue. If that trend continues I won't have missed many more than if I was having treatment around the Christmas/New years holidays. I realize missing doses does have an impact on the effectiveness of the treatment, but if I don't start to average missing any more than I have, I'll stick with what I'm doing. Thanks for your comments and your suggestions.
Posted By: MarvB Re: Recently Diagnosed - 08-10-2018 04:49 PM
Wow,I just noticed that I violated the rules regarding alternative treatments. I won't mention that stuff again. I do have a question though. Does anyone know if clinical trials are considered alternative treatment on this board? They aren't proven. The reason I ask is because the doctors give the radiation/chemo treatment very little chance of working. However, I have to complete one accepted treatment method before I can get into a trial. So, if I do get into a clinical trial, can I discuss it on here? I don't want to get cited twice. Thank You
Posted By: ChristineB Re: Recently Diagnosed - 08-10-2018 09:12 PM
Marv, dont worry you are ok!!! I completely understand your posts and the reason behind them. This sort of thing isnt always black and white. I know 100% that you are not mentioning something here to profit from it or to encourage others to try it where it could be harmful or even deadly in certain situations with some patients. If there is to be further discussion of those types of things OCF prefers to have those conversations taken off the open online forum. Posting here is public so anyone from anywhere can read things at any time 24/7/365. Our site gets thousands of views every single day from people from all over the world. These people usually dont bother registering or setting up an account, they just come here to read and learn. Where this could turn into a problem is if someone is taking advice that was given to a member who has already shared their medical situation so we have a bit of a background and can help them with pretty specific info. We see it here all the time where newer members want to compare their situation to someone else who they feel has the same situation as them. Too often, without much info or understanding that its not possible to have an equal comparison. For example ... if you take 20 people who are all say 44 years old, 5'11" and weigh 180 lbs, male, HPV+, Caucasian brown hair/blue eyes, have all had the same vaccinations, all live within a 25 mile radius in NY, NY, they all have the same tumor size, stage and location, are all given the same treatment plan and all start treatment within a few days of each other, they all even have the same B+ blood type and medical history, number of children, middle class white collar office jobs, same daily routines, activity levels, same type of sports participation and they have the same type of diet, etc. On paper those 20 people appear to be nearly identical but they are still not an equal comparison as every single person is a unique individual and will react in their own unique way to medication, medical procedures, and recovery. Those 20 people have different DNA with different hereditary traits and their own different resistance to diseases. Sorry about my long explanation about the "everybodys different" principle! What is visible on our online public forum could be easily misunderstood and taken out of context by someone who is not that fluent in English or how our forum operates. They could also be desperately searching for help and in their frantic quest to be well again, not think things thru completely and are grasping at straws when trying to find similar situations which may be harmful to them. Medical things are never as cut and dry as they appear and no 2 patients are ever really the same with the same reactions.

Clinical trials are perfectly fine to discuss. Please make sure you ask the people running it if you are allowed to discuss it on an open public forum or our message boar. There are often all kinds of fine print and legalities when it comes to trials where you may be required to sign contracts vowing to keep everything confidential. Often those types of things will have patients who get the real medicine and others who are given a placebo but the patient is never told which they receive. I cant remember the website but there is one that lists all current trials. Some trials are only available at certain treatment facilities while others go by country or some will have several countries participating. I hope you are able to get into a trial which is showing promise and it works its magic to eliminate the cancer for good.

If you ever have questions about the forum just ask. I check in frequently and am always happy to help all of our members. Have a great weekend!!!
Posted By: MarvB Re: Recently Diagnosed - 08-21-2018 09:26 PM
Hi everyone. I just got back from seeing a radiologist and the assistant oncologist. I have just finished up two doses of Cisplatin and had a third scheduled in three weeks. The assistant oncologist said I didn't have to take the third dose if I didn't want to and recommended that I not take it. She said recent studies have shown no significant difference in outcome between two and three doses. So, if anyone else is in the process, they might want to check with their oncologist about it. Also, I have difficulty laying on my back during radiation. My tongue swells and blocks my airway after about two or three sessions in a row and I have to miss one to allow the swelling to go down. The radiologist decided to try having me lay face down and see if that would work. I did the mask simulation.last week and that went fine. Today, the radiologist said they over layed my old session with the new session and it lined up perfectly so the treatment should have the same effect. Again, if anyone else has the same problem I do, this might be an alternative. Good luck to everyone who is going through this and to those helping them get through it. .
Posted By: KristenS Re: Recently Diagnosed - 08-21-2018 09:55 PM
So glad you have an alternative to finish out the radiation! I've been wondering how that was going. Not fun, but better than quitting. I hope that part goes well!

very gentle virtual ((hugs))
Posted By: gmcraft Re: Recently Diagnosed - 08-21-2018 10:26 PM
Marv,

That’s good information about the mask and the tongue swelling. Thank you. A few people I know did not have all three bags of Cisplatin. John didn’t and the medical oncologist assured him that it was not a problem. I was initially upset about it, but my mind eased when I met those others who couldn’t have the third dose.
Posted By: MarvB Re: Recently Diagnosed - 08-25-2018 01:29 PM
Gloria,

I see that your husband went through a lot and put up a good fight. He's braver than me. I won't let them do any more to me than complete the current radiation treatments and, possibly go into animmunotherapy trial if one is available. I found out that I test positive for the PD-1 and PDL-1 receptor which means I'm a good candidate for one of the newer treatments. If that doesn't work, I'm done with no regrets and no second thoughts. My wife and I have already discussed it and are on the same page. Quality means more than quantity to me.

Marv
Posted By: gmcraft Re: Recently Diagnosed - 08-27-2018 01:23 PM
Marv,

I don’t think John ever made up his mind to be “brave” or that he was going to “beat” the cancer. He just did what the doctors recommended. The only thing he was very insistent on was having his esophagus re-opened after scarring from the radiation closed it. He couldn’t even swallow a sip of water. He did find an interventional radiaologist/general surgeon who was willing to try this totally new treatment on him. Unfortunately, John esophagus was opened, but he never really could eat solid food again. However, that’s a story for another day.

I was glad to hear you tested positive for the PD 1 and PDL1 immunotherapy. I might have mentioned it to you, John was in the Stage 1 clinical trial for PDL 1. I’m glad to know that it’s helping other patients.
Posted By: MarvB Re: Recently Diagnosed - 09-03-2018 10:14 PM
Hi Gloria,

I'm sorry to hear about your husbands esophagus. I've noticed that I have more trouble swallowing water as time goes on and have persistant, naging cough because saliva gets stuck in one spot in my throat. I think it started from trach damage and the radiation is making it worse. Since radiation, the swelling of my tongue and the floor of my mouth, along with the bad taste made my decision to have a PEG tube installed. I started losing weight once this PEG was installed. Bosst VHC helped slow down the weight loss but, I found a product that's great for people going through this. It's Scandi shake mix. It can be purchased at Walmart on line. My wife combines them with some of the high calorie Hungry Man TV dinners and with canned chicken, kayro syrup, canned chicken, sweet  potatoes, yogurt, etc. She makes it in three meals per combination. I get three meals out of it that are around 800 calories each and loaded with protein. Unfortunately, it was a recent find. Fortunately, my weight is holding and increasing slightly now. I would recommend it to anyone who needs to add weight.

Marv
Posted By: gmcraft Re: Recently Diagnosed - 09-04-2018 01:04 AM
Well, your wife must be commended for her creativity. When I made shakes for John I put in ice cream, fruit but never canned chicken, etc. come to think of it, why not? Do let us know how that has helped you in keeping your weight up in the long run. Maybe it’s something that others can do too.
Posted By: MarvB Re: Recently Diagnosed - 09-04-2018 01:46 PM
Hi Gloria,

So far,I haven't lost weight since she started doing these meals. Not even through the vomiting from Chemo. Also, I have a very sensitiveness stomach. None of the premix foods set well with me. They either caused nausea or diarrhea. Eating "regular" food has been great for solving those problems too. If anyone wants, I can list a few of the mixtures she uses. You do need a good blender to pulverize it.

Marv
Posted By: gmcraft Re: Recently Diagnosed - 09-04-2018 04:18 PM
I agree.. it has to go through a good blender to ensure there’s no blockage in the tube.
Posted By: MarvB Re: Recently Diagnosed - 09-09-2018 01:18 PM
Well, Monday is my last radiation treatment and I was just assigned to a different radiologist because other one left there. The new radiologist did something my previous radiologist never did. She actually examined my tongue where the tumor is. She also went over the CT scans used for alignment of the radiation. She concluded that the chemo and radiation had not worked. She sent us to see the oncologist immediately. He look at her findings and agreed. They decided to start me on immunotherapy with Opivo in a few weeks. The chances of it working are very low but it's the best option I have. If it doesn't work and I'm still around, they will try to get me into one of their clinical trials there at the hospital. If that doesn't work......................

Anyway, that's the latest news from me. If anyone else has had immunotherapy I would like to hear how it went.

Thanks for reading this,
Marv
Posted By: ChristineB Re: Recently Diagnosed - 09-10-2018 12:17 AM
Marv, I do know several who have been treated successfully with the Opdivo/Keytruda immunotherapy drugs. Unfortunately, I do know of others who this has not worked for them. For some of the patients who have passed away, the new immunotherapy meds allowed them to have some precious quality time by extending their life by several months/years. Hoping you become another patient who reports success with the new immunotherapy treatments work for.

Please keep us posted!!! I know Ive been following your journey and appreciate any updates you share with us. Best of luck with everything!!!
Posted By: gmcraft Re: Recently Diagnosed - 09-10-2018 12:46 PM
Marv,

As you probably know by now, my husband John was in the Phase 1 trial for PDL-1. I assume it’s a smaller dose than what you might get, because the purpose in a Phase 1 trial is to ascertain that the drug is safe to use on humans. To our surprise, the body did not react to the drug like it would to chemo. John would get a bit of slight diarrhea and that would be it. There was no nausea and no shakes. However, we were warned that the immunotherapy might also work against other parts of the body as it worked against the tumor. Your doctors would probably be telling you this. We watched carefully for anything that might arise (like a rash) that was not there before the drug was administered. The other patient who always shared a room with John during the infusions also did not have nausea and shakes, the usual chemo reaction. He lived a long way away — he would take a train to a small town outside of Toronto, pick up his car and drive himself home after each treatment. John felt it was way easier than the chemo treatments.

When John went into the clinical trial, it was our hope that it would help patients who came after. I sincerely hope that you are one of those patients.
Posted By: MarvB Re: Recently Diagnosed - 09-14-2018 02:00 PM
Hi Gloria,

Thank you for the information on your husband. I start Opdivo in five days. I'll get a dose then and another a month later. The doctors did explain that it could cause severe problems with my organs. The also said those things are usually slow acting and they can monitor for them along the way. They aren't looking at it as a cure. They hope it will slow the progression. After my hemiglossectomy, I went from being cancer free according to a CT scan and a PET scan to being stage 3 in about a month. The tumor even invaded the flap they used to replace part of my tongue.They kept telling me what I was experiencing was the result of the surgery. I saw five different doctors before one would even check. They kept telling me it wasn't protocol to do CT or PET scans so soon. I trust the doctors I have there now.

I get a CT scan today to see what the current status is before starting Opdivo. It's very aggressive so I don't have much time to see if something is going to work.They're moving me along as fast as they can.

Marv
Posted By: ChristineB Re: Recently Diagnosed - 09-14-2018 05:26 PM
Thanks for the update, Marv! Ive been watching for you to post. There have been several patients here who have had mixed results with Opdivo. I am hoping you will be one who this new medicine works for.

Best wishes!!!
Posted By: MarvB Re: Recently Diagnosed - 10-03-2018 12:02 PM
This is Marv's wife Darlene. It is with a heavy heart that I tell you that Marv lost his battle to cancer, Sunday, September 30th. The cancer was raging and he never was able to get stable enough to start immunotherapy with Opdivo. I truly wish all of you health and happiness within your lives. Tell the people today, that you love them. Our lives do change in a heartbeat. And thank you all for the emotional support that you gave him. It meant a lot to him.

Love and peace,
Darlene Breedlove

Posted By: gmcraft Re: Recently Diagnosed - 10-03-2018 05:25 PM
Dear Darlene,

I cannot tell you how sorry I am for your loss. Around here when we lose one of us, it feels almost like we’re losing a very close friend even though we may never have met. My condolences to you and your family. I wish you all the very best.
Posted By: KristenS Re: Recently Diagnosed - 10-03-2018 06:07 PM
I am so very sorry for your loss. Really hoped something would come through for him at the last minute. He seemed a very brave man. Many hugs to you.

Kristen
Posted By: ChristineB Re: Recently Diagnosed - 10-03-2018 08:14 PM
Oh Darlene! Im so very sorry for your loss!!! We all bonded immediately with Marv and were in his corner cheering him on.

Ive been worried about him and was watching for Marv to post. He told us about his terminal diagnosis. Ive been worried he was struggling and kept telling myself he will post tomorrow, but every day still no posts. He may have only been with us here at OCF for a short time but he touched many lives in that time.

Rest in peace Marv! We will miss you cry

Thank you for letting us know Darlene.
Posted By: MarvB Re: Recently Diagnosed - 10-11-2018 10:44 PM
Thanks for being there for him in a way that I couldn't be. Only those of you that fight this disease really can relate to one another.
© Oral Cancer Support - Survivor / Patient Forum