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

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.....

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

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.

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.

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.

Thank you so much for this post. I have been recently diagnosed and am very very scared. Your post gave me hope.

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,

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.

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.

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.