I'm new here. Got diagnosed by my ENT on 5/24/17. Official on 5/2017 after CT scan and biopsy result. HPV tumor at back of right tongue and tonsil. Some lymph node involvement, but doctors say that is normal. PET scan shows no spread. I'm scared because I want treatment to start faster. I have dental exam on Friday. Then meet with chemotherapy doctor following week. I get another CT scan for radiation mask same week as meeting with chemotherapy doctor. Treatment will be radiation and chemotherapy. Is what feels like a time delay normal? Doctor said it was stage 3, but said staging was not the main thing because staging is changing. I'm so scared. My ENT and team say they are optimistic and they will get me through this. I am angry at myself that I did move faster, but I thought it was a sinus infection because I've had those in the past. Any advice, etc. would be appreciated. I'm trying to learn how to post as well. Thank you.
Philip

Welcome to the forum, nevertheless, I'm so sorry that you have to join our circle of friends.

The time span between diagnosis and the start of treatment does seem long, but there are so many things that have to be done that the time is actually necessary. I'm in Toronto, Canada; here, the government's expectation is for patients to start treatment within six weeks of the diagnosis. In the U.S., the protocol seems to be similar to me.

The best thing you can do for yourself right now is to find out if your hospital provides other services such as a nutritionist/dietitian, speech therapist and even psychotherapy. It helps to have all that information beforehand because if you need any of these specialists in the middle of treatment, you will know how to access them. It will also help for you to stop, take a breath and read all of the information pamphlets that your doctors may be giving to you, for example the ones on chemo brain, how to deal with skin breakdown during radiation, etc. there are tons of these around. They are factual and they have suggestions which you can follow. That will help you focus on your treatment and gain a measure of control over your illness. While we all fear cancer, fear doesn't help you deal with what you have to face when under treatment. If you have been given swallowing exercises, please learn to do these and maybe even start doing them so you get into the habit of doing them every day during treatment. These exercises are really helpful for keeping the swallowing muscles working so that they don't atrophy.

Do go out and eat all your favorite foods now. Don't worry about putting on weight as you are bound to lose weight during treatment. There will be taste changes so that for a while nothing will taste as they should. So, do that now.

Don't be angry with yourself. It's not going to help you deal with the disease. If you can at all, change your focus -- dealing with it so that you will have an easier time getting through radiation and chemo. Don't dwell on what you can't change.

I'm sure ChristineB will be by soon to talk to you about intake, so I will leave it to her. Do post again to let us know how you're getting on. There are members who are quite knowledgeable and they can be good support for you.

Welcome to OCF, Philip! You're in the right place for info and support. We will help you get thru this!!! Dont fret about any delay, you actually did quite good with your timeline of discovery and only a few weeks until treatment starts. As far as being sick, I thought the same thing... that I had a sinus infection but nope I had cancer as my family doc suggested. Im so glad I listened to him and went to the specialists he told me to or I wouldnt be here today. Its 10 years since I was first diagnosed and if I can do it then you can too

My advice for now is to eat all your favorite foods, desserts too. Treatments are going to change your sense of taste and ability to eat. For most of us its a temporary change but it can upset your normal eating for at least several weeks to a couple months. You do not want to go into this with cravings for something you cant fully enjoy when eating and you're half way thru treatments. Ill nag you soon enough about your daily intake of calories and water. Just eat everything now and if you are slim push to gain some weight before you start treatments.

You should have a thorough check up with flouride trays made and a full blood workup (including thyroid and testosterone) prior to any treatments. You need to have a baseline of what those normal numbers should be as you wont get an accurate reading after rads/chemo has started.

Anyone who offers you their assistance, tell them when the time comes you will let them know what they can do to help. People really do want to help but most of the time they have no idea what they can do. Theres all kinds of little things that can add up to making this much easier on you. Walking the dog, picking up groceries or prescriptions, driving you to treatment or an doctors appointment, doing a load of laundry, mopping your kitchen floor or if you have children taking the kids out for a Saturday of fun so you can get rest are all little things that are a huge help when you arent feeling well. Write down everyone who offers their help and then you or your caregiver will know who to call on when you need a hand.

The American Cancer Society has a patient/driver matchup program that might be useful to help you get to your treatments, or they will give you a $300 voucher for prescription copays or transportation costs. They are available 24/7/365 so call right away and get the ball rolling as the paperwork is likely to take a week or 2.

Im sure theres a million other things to tell you but off the top of my head I probably already said too much info. I know you are scared and boy is that one difficult sentence to write, even to a bunch of strangers its hard to admit. Ive been where you are and so have our members, we understand how scary the unknown is and the wide range of emotions that come with facing a serious potentially deadly disease. We got your back and will be here so if you need to vent or lean on someone its ok, we understand.

Best wishes with everything!!!

Thank you for the quick reply and encouragement. A friend directed me to this web site and forum. I like the idea of eating all of my favorite foods now. I've been told to avoid deserts, but my doctor says desert is ok. Is it ok? You hear so many things. Dealing with the anxiety and fear is the hardest. I have begun counseling one day per week and the doctors gave me some anti-anxiety and sleep medications. I'm am an emotional mess and can cry at the drop of a hat. I'm so grateful to be married to a strong and loving woman, but I know this will test our marriage like nothing else. I'm a solo attorney and I'm moving my clients and myself to a larger firm because I want the best for them. They will be in good hands and I will be available to them even if I'm unable to attend Court while I'm being treated. Thank you. Philip. .

Yes, desserts are ok. Have one for me too!

Some patients are able to work during their treatments, but most arent. It depends on the type of job and the persons overall health, age, etc.

What you are experiencing is completely normal. Its almost like the stages of grieving. Just be aware many OC patients and caregivers will need some help to get thru treatments and recovery. Its perfectly acceptable to need anxiety meds and a therapist to help you manage your emotions. Its usually a temporary thing just like anything other treatment aid, its a tool to get you thru the rough spots. Depression runs high in OC patients, its pretty easy to fall into a slump when you hit the hard parts of treatment and recovery. Its not easy to think of things on the bright side when week after week you feel worse and worse. Im glad to see you have already reached out to someone at your treatment facility. Its nothing to be ashamed of, if I had to guess I'd say about half of patients need this to help them get back on their feet. Also, one of the very best things about our group is we completely understand where you are coming from and you are anonymous. Nobody here knows who you are or any personal info unless you tell us and that stays here, we never share our members info. So dont ever worry... your secret and info is safe with us.

You are right, this will be a big test on your marriage. Being a caregiver is a tough job!!! I always thought as the patient I had the easy job, I just sat thru all the treatments and eventually recovered. I cant imagine how I would be as a caregiver. I dont think I would be able to handle watching someone I loved go thru heck while keeping a smile on my face and always being positive but also managing appointments, foods, medications, doctors and occasionally putting on the nurse hat from heck*** and being an advocate for my patient. Nope, Im NOT cut out for that job at all. Just understand how difficult this will be for your wife and make sure she gets a break once in a while to walk away and clear her head. Going out to lunch with friends or getting a mani/pedi can be a huge morale booster for a caregiver who is overwhelmed. You're very fortunate to have such a strong person to watch out for you. She can also benefit from our site by learning about your disease and how to help you when the going gets tough.

Welcome Philip!

Sorry to hear of your diagnosis but glad you found us! I too had never posted or been involved in ANY on line social media, including Facebook, until joining this group. You will find everyone here very supportive and willing to share their experiences and knowledge to help you get through this very tough, but beatable disease.

As far as the timeline goes you are doing fairly well. It took me close to 2 months from noticing the lump in my neck and seeing my GP, to getting confirmation from the actual biopsy. Then another 4 weeks to get everything set up prior to treatment start. A little delay due to my doctor's vacation schedule.

Like Christine said, the depression and anxiety are par for the course. You may have never taken a pill for emotional issues in your entire life, but you have never been diagnosed with cancer either. I understand exactly how you feel. I am a pretty well balanced individual but this unhinged me big time.

You have a lot going for you so take some heart. I am sure you know that the cure and survival rate for HPV cancer is significantly higher than for those of us that are not HPV positive. You have a strong and loving wife to help you get through this. I have been married for over 40 years and have had a good relationship with my wife. Our love has only deepened through this entire ordeal. You just need to be aware of her feelings as well, as I am sure you will.

Just remember, when you hear someone refer to battling cancer, it's just that. A "battle." I am sure that when you walk into a courtroom you go in with the intention of winning. Take the same attitude here and you will do just fine. You are going to kick some butt!

Keep us up to date with your progress and best of luck. You are going to be OK.

Ed

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Philip,

Your clients are very lucky to have you looking out for their interests even when you are faced with a crisis in your own life.

I cared for my husband for close to four years at home. If anything, those were times when we drew closer than before; we created new memories for us. We tried to carry on s normal life, we made jokes, we people-watched together at the hospital and we discussed the medical options together. I had the feeling that we were fellow travelers on this cancer journey. Honestly, if he had shut me out by not letting me participate in the worst trial of his life, I would have been really hurt and sad. I imagine your wife would probably feel the same way.

You would be amazed at how many people seek help from a therapist during treatment. At our hospital, there is a whole department that does the work. Like my family doctor used to say to me, "You would go get help if you have a broken leg, going to a therapist is no different." We all grieve, get angry are filled with fear when we hear the dreaded diagnosis. It's okay to cry "at the drop of a hat" like you said. Some people may grit their teeth and bear it, others may take solace in learning everything they can about cancer and the treatments; there's no one way to deal with such a difficult stumbling block in life. Give yourself permission to do what brings you relief.

Here's a shout-out to your lovely wife.

I'm so grateful for all the advice. I'm at back work today, trying to figure this out. I know I need to trust my treatment team and follow the process, but the anxiety can be overwhelming. I have been prescribed medication and I am taking it before bed and if needed, during the day. My blood work just came back as normal. Next step is to meet with dentistry this week and then next week chemotherapy doctor meeting, new CT scan for mask. I hope the treatment s begin right after that.
Philip

I'm so grateful for all the advice. I'm at back work today, trying to figure this out. I know I need to trust my treatment team and follow the process, but the anxiety can be overwhelming. I have been prescribed medication and I am taking it before bed and if needed, during the day. My blood work just came back as normal. Next step is to meet with dentistry this week and then next week chemotherapy doctor meeting, new CT scan for mask. I hope the treatment s begin right after that.
Philip

Did your doctors do a full work up including thyroid and testosterone? If not ask them about this.... it really is important. BTW, most of us have not had anything show up in the bloodwork showing we had cancer. Our kind of cancer is a sneaky bugger, hard to detect and hard to kill.

Everybody above posted all good stuff. Your experience is very familiar to me as well. Base of tongue started in my tonsils spread to the lymph nodes... Shouldn't this be going faster? What can i do to accelerate the process and all that. As noted above the delays feel huge, but they are really insignificant in the grand scheme of things.

One of the benefits is you can eat whatever you want. Ice cream was a focus food group for me until I couldn't stand the taste of dairy. That may have been an effect of chemo. Not sure what your treatment plan is. Become familiar with smoothie devices. I have a Nutribullet that I still use. Various recipes are out there for all kinds of tastes. Shrimp was a good food throughout treatment for me. It's soft and didn't hurt my throat so much. Funny that at some point chicken felt comparatively abrasive.

Regular walks are good emotionally and maybe clinically. I ran for a while and biked for a while, but eventually just walking kept my spirits up.

Emotionally things settled some for me once treatment started. Just committing to a plan helps. The roughest time for me was oddly just after treatment ended.

I worked through most all of my treatment. I did take a few days off mostly late in treatment usually related to chemo. I think I took some vacation time toward the end because I was just worn out.

It's not a club anyone wants to be in, but you're in good company.

My doctors did a battery of blood tests, but I'll ask. My blood tests on Friday came back normal, but I'm slightly anemic (which I knew) so more protein for me. They told me it is ok to eat desert. I love pie. They give me blood tests ever time I come in. More blood tests Chekov. That is an obscure original Star Trek reference. I will ask my doctors your question, which I so appreciate. I break down in gratitude for the support you are giving me. This will not be forgotten. My wife is amazing. My family, including my wife's family, is supportive and I have friends I don't deserve. I want to run away to northern New Mexico and live in an adobe house, but the work is the work. I'm back in court tomorrow. I'm an attorney, not a defendant. Ha! Please keep the advice coming and as I learn more I hope to become a resource on this site.
Philip.

Thank you for advice about the waiting. I hope to start treatment by the end of this month or early July. It is difficult not to second guess myself because I should have been on this in March. Walking sounds like a good idea. I'm thinking that getting a Netflix subscription might be a good idea as well.
Philip

Philip,

Sorry to here about the diagnosis. Dang HPV got me to, almost 5 Years ago to the day. The good part is that is was 5 years ago. That being said. Treatment, is down right brutal. Standard treatment is 7 week of radiations with 3 big bags or weekly cisplatin. Weekly seems to be easier, Those who try 3 big bags don't always get the third dose, I did not.

My standard spiel is that there is about 6-8 week of hell. During that time your ability to do the things you might normally do may become extremely difficult. Cutting grass, taking out garbage, work on home, cars, ......... at least for me, that all stopped. My advice is to clear your schedule. You have a couple of weeks, take advantage of them. Get the house, garage, cars, other projects done, out of the way, or at least find contingency. If you start in July, August and September are going to be rough.

Rads start kicking in about week 2 and the effects are cumulative and it just gets worse every day until about 14 days after last treatment. It really does not get better then, it just stops getting worse. At that is a Huge thing mentally. Cisplatin can really through your body for a loop starting 12 hours after infusion and it may last 2-3 days. Everyone is different but nausea, vomiting, "chemo fog", loss of appetite, and constipation are real and make things uncomfortable. Form me, driving to the center was a "no go" Tues and Wed after Mon cisplatin.

Just get through the next feeding, Feeding turn to days, which turn to weeks. Its a grind.

The good news is that it does end and things do start improving. And for many people like myself the treatment is effective. As I said I am just under 5 years out and doing well.

Posting also helps a lot of people "empty out" thoughts and feeling and generally provides comfort and reassurance.

Good luck with treatment.

Thanks for being upfront. Your experience is similar to what I've been told. The good news is that I'm in decent shape and I'm going to the gym and will work out as long as I can after treatment begins. Right now, I'm dealing with the mental aspects of this. Any advice would be appreciated. Posting helps. It is difficult to focus on the future, but that forces me to live in the present, which is something I've never been good at. I'm scheduled for seven weeks of radiation and three days of chemotherapy. Cisplatin. I'm a solo attorney. I'm fortunate that I'm putting my cases with a larger firm, so my clients will have experienced representation during my treatment. I will be with the larger firm when I get back as Of Counsel. I hope to start treatment by the end of this month or early July.

Hi Philip,

The time before treatment starts can be the most stressful. It's difficult waiting for things to start happening and your thoughts include the fears of cancer as well as those of the treatments. Everyone reacts differently to the treatments and some do much better than others. Personally, I handled the treatments fairly well by comparison to many. The fact that you are in good shape is a definite plus and you might try concentrating on getting yourself in better shape before you start. Whatever your routine is, kick it up a couple of notches. Then you are doing something "proactively " to help you through the treatments instead of just sitting around waiting for it to happen.

Finding a live support group prior to treatments can also be very helpful. Your hospital or cancer center should be able to point you in the right direction. They should also have social workers available as well as therapists and psychologists. All you have to do is ask. Most cancer centers take the emotional side of this disease as seriously as the physical part. Just let your doctor(s) know you are having problems. If you were preparing for a case you would utilize every expert witness you needed to win. Do the same thing for yourself.

I know you have heard it before but just keep a positive outlook. Positive thoughts lead to positive outcomes. The treatments are difficult but they are "doable." You have a lot of good things going for you and I know your going to be fine.

Ed
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I really did not care much for the Cisplatin. Not that anybody really does. On the good side it's definitely not habit forming.

I had three doses with concurrent rads as it sounds like you will. The first day of chemo I looked a little green, but didn't feel bad. It took me two or three days to feel bad from chemo. My MO emphasized the importance of fluids after chemo. Get the stuff in and get it out quickly with the fluids. I had fluids by IV for two days after infusion to help clear it out.

It always seemed surreal that the nurse would come out wearing a face shield,plastic apron and rubber gloves to protect themselves from the Cisplatin that they were injecting into my vein.

Treatment is tough, but you will get through it. Be aware that the toughest days are just after treatment ends. It takes a while for things to catch up with you.

I made a list of things I wanted to do post treatment. It gave me something else to think about. Light at the end of the tunnel kind of thing. I've done most everything on it now.

Enjoy your pie and get it ala mode. Everything's better with ice cream.

Gulfcoast
Good to know you worked! I am hoping to stick to my routine as much as possible.

Philip,
The ideal time frame, according to my radiation oncologist at Stanford, is treatment within 70 days of diagnosis. It's okay to take some time to choose the right protocols.

My timeline:
Lymph node noticed 1/5; many tests all clear until "cyst" removal 3/6. Diagnosis of metastatic SCC to lymph node 3/7. Biopsies to find the primaries benign 3/13. Referred to Stanford 3/29. Trans oral robotic surgery to identify primary 5/9. 2mm primary found in vallecula 5/10. Rads started 6/13 for 30 sessions, 60 Gy.

Any thoughts of combining immunotherapy with the chemotherapy and radiation treatments?
Philip.

As far as I am aware, immunotherapy is a kind of chemo. That's how it was when I husband was in the trial.

The immunotherapy chemos are targeted towards recurrences, especially where they have mets to the lungs. This works on lung cancer patients as well. But by itself, it isnt for OC. There are many conversations on this forum about the new immunotherapy chemos. Use the search function with any of the immunotherapy drug names and you will find posts.

Here is more info (from what I wrote to another member recently w/ quotes from OCFs founder, Brian Hill).....

On the bright side, this has not been proven to be cancer yet and there are new drugs that have shown to be effective in cases like your husbands. Opdivo (nivolumab) from Bristol-Meyers and Merck's Keytruda (pembrolizumab) have fast tracked thru the trials to be available years earlier. Heres a post from Brian from 10/15 about these newer medicines..... "There is a brand new drug from Bristol Myers Squibb called Opdivo (nivolumab). I would ask your doctors about this. I watched this go through clinical trials and it was later fast tracked by the FDA for lung cancers in patients that had had previous platinum based chemo. It was targeted for non small cell lung cancers. You don't comment about your specific diagnosis, but even if yours was lightly different, this is a drug that works with your own immune system and it might open up a pathway in other lung cancers for an immune response. It had some pretty good results though it didn't work for everyone. If your cancer is a variant of this, you may still get someone to try it off label. That might be a hail Mary idea, but I've always said I'm not going to go quietly into the night. It think it is at least worth talking to your doctors about sooner rather than later." This is past all the trials and is now readily available with many patients who have found great success with these drugs. Talk to your husbands doctors about the possibility of these newer immunotherapy drugs.

Thank you. I'm learning this is a process. I'm both eager and anxious to start the treatments.
Philip

The anxiety I had between surgery and starting radiation was awful. Looking back I now wish I had relaxed - but I was obsessed with side effects and what would happen next. My doctors have played down side effects except for swallowing and weight loss. They also let me know that when things get worse they will have new salves, mouthwashes, etc.

One thing that helped me manage the wait was setting up what would be needed - making sure I had water bottles for rinsing, creating a checklist/schedule to make sure I drink enough water, hit my daily protein target and complete swallowing exercises, etc. There is a small psychologist boost in taking action when faced with something that is totally out of our control.

I also ate all my favorite foods and gained 5 lbs. (not on purpose! Wine and pasta will do that ;))

Side effects are starting exactly as I read on the board so all my worrying was for naught. If you can relax and get lots of rest.

You will get through this and you have all our support.

I am scheduled to have three chemotherapy treatments. My chemotherapy doctor and I discussed medications and he wants to use Carboplatin, instead of Cisplatin. Does anyone have an experience with Carboplatin? Thank you.

Philip

I've had carboplatin my last chemoradiation treatment, which ended in January, 2014. It was the easiest chemo I had, and had 4 others before, but everyone is different. There are the usual toxicities associated with the platinum based chemo, but some are not as severe as Cisplatin, others that can be more severe, if I recall from my reading. I had slight tiredness, but I was going through Proton radiation too, and traveling each day to get there by hiring a driver, which was stressful on its own, and couldn't wait to get zapped. Besides that, I had mucucocitis and thrush start about week 2 or so, which was treated with nystatin swish and swallow, NeutraSal rinse, although it's no longer available, and having my mouth sprayed daily at the radiation center by the nurse. I was still able to eat, and basically lived on egg drop soup and Glucerna. Trying to recall what else, and probably didn't post much when going through treatments, but I'll check back.

The oncologist checked my blood levels, CBC maybe, each time before the infusion, especially the liver enzymes, to see if they were out of range, and had weekly infusions instead of the 3 you noted.

There was discussion here before about Cisplatin vs Carboplatin with a study of such I may have posted, which may include this meta-anylsis if you like reading.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4872772/

In addition, here is a drug info sheet on Carboplatin:

http://chemocare.com/chemotherapy/drug-info/carboplatin.aspx

Not much new to report. I have a call into my chemotherapy doctor to further discuss the pros and cons of using Carboplatin vs Cisplatin. My doctor wants to use Carboplatin because I do have measured hearing loss. I've scheduled a "second opinion" review by doctors outside my health insurance plan, even though I will almost certainly use the standard treatment of chemotherapy and radiation through my health insurance. The doctors outside my plan combine immunotherapy with the chemotherapy and radiation, or at least that is what I understand. I will post more if this is relevant after my "second opinion" exams. Having said all of this, I'm scheduled to begin my treatments on July 10th. No delay with respect to the "second opinion" exams. I am both anxious and eager to begin. I was diagnosed by my ENT doctor on May 24, 2017. This was later confirmed by the biopsy and scans. I think about how, prior to May 24th, I never heard of Carboplatin or Cisplatin. Words and drugs that were not part of my world suddenly take center stage.

John suffered hearing loss in one ear from Cisplatin. It wasn't very bad but significant enough for the audiologist to suggest a hearing aid which John refused. He was put on carboplatin when the phase 1 clinical trial of immunotherapy did not work for him.

Cancer treatment does force us all to learn stuff which we would otherwise never even hear of.

Loss of hearing is one of the reasons my doctor is using Carboplatin, because I already have documented loss of hearing.

I received a second-opinion today that has led me to more questions. Basically, the second-opinion recommended Erbitux instead of Carboplatin. No Cisplatin for me because I already have diagnosed hearing loss. Anyway, I have to make a decision. The normal standard of care at Kaiser is to use Cisplatin or Carboplatin, but they will give me Erbitux if that is what I want. Yes, it I get to choose. The problem is that the second-opinion doctor at UCSD likes Erbitux, and my Kaiser doctor likes Carboplatin. I think both doctors are good. If I choose Erbitux, it will delay the start of my radiation treatments by one week because the Erbitux needs to build up in my body and there would be more treatments over time than the three Carboplatin treatments that are scheduled. Of course, I want the radiation treatments to begin as soon as possible, so that is the choice I have to make. I would appreciate any feedback and I understand this is a holiday, but I need to let my doctors know on Wednesday. Thank you.

I've had Erbitux, an EGFR inhibitor, with Taxotere in 2012 along with radiation, but it was for a recurrence with prior therapy failure. Now it's available as first line treatment. Two things they initially watch for is anaphylactic shock, and heart failure, which can happen in very rare cases, usually first or second dose, but is severe enough to warrant close monitoring, which they do and the patient is to report any symptoms. It seems the south east has a higher rate of negative effects, and those centers that do experience this may give smaller initial doses.

Otherwise, the worst part of Erbitux is the skin rash, which is not an indication how well the drug is working, but just a side effect of the EGFR inhibitor. Such can be treated with tetracycline antibiotics, and others. Some other side effects, like mucocitis, can be worse than it is with cisplation, and a few others, but otherwise it's tolerable, but not as easy as the Carboplatin I had, but I had the Erbitux with Taxotere. This combination was found to be superior to other treatments like Cisplatin. See below.

There is a small percentage, I believe around 5% in head and neck cancer, that have an EGFR resistance. With colorectal it's even higher like 40%, and they do KRAS gene mutation testing, and if they don't have the mutation, they don't get the Erbitux. I've since heard of some biomarker testing in head and neck cancer Patients for better selection, and medication to overcome resistance, but not sure if it's still in testing.

Sometimes it's difficult to choose between treatments when presented with two or sometimes even more different types of treatments, but once presented with the details, a timely informed decision has to be made. I don't think it would make much difference with a loading dose of Erbitux and week wait for radiation vs simultaneous start of Carboplatin and radiation, and sometimes even with that there can be a few days difference in the start of either one. The Erbitux would be sensitizing the tumors for radiation, and have an effect on it.

The Erbitux loading dose, is usually around 400mg, and 250mg weekly thereafter for the duration of radiation, 6-7 weeks. If they feel radiation delay matters any, I heard of radiation oncologists increasing the radiation dosage, plus it's best when they keep the treatment package less than 100 days for optimal treatment vs other factors.

Your concern seems to be the hearing. Carboplatin can have an effect on that too like Cisplatin, which are both platinum based. I've heard, minus already hearing impairment, hearing damage is more in large cispla doses over 100mg or accumulation of over 300mg. I've heard of other chemos being used in such hearing imparment cases as yours, but otherwise in other patients with the onset of symptoms the infusion rate can be slowed, chemo switched or stopped altogether to prevent permanent hearing loss, and should be followed by an audiologist before, during and after treatment.

http://www.cancernetwork.com/head-neck-cancer/docetaxel-regimen-tops-cisplatin-head-and-neck-cancer

I hope this helps

Its not easy making those decisions! Please remember our members are not medical professionals, we have knowledge based on the experiences we went thru ourselves. Heres a link to the main OCF site where there is page after page of informative info that is up to date and might be helpful with making your treatment plan decisions.

Main OCF Site... Treatments

I've had four Erbitux treatments and I have four more scheduled. The Erbitux caused severe acne, which is treated with antibiotics. I also have a slight fever and some slight body aches after each dose, but that goes away if I rest. The worst of it was the loading dose, which caused fever and body aches all night. The radiation is causing scores in my mouth and difficulty swallowing. I've basically lost the ability to taste food. I have weird food cravings, which I cannot satisfy because eating is slow and uncomfortable. The main thing right now is keeping my weight, so I am drinking a lot of protein drinks and smoothies. I'm still trying to do some exercising at home. I am working in the office part-time. My most recent blood test came back normal, except that I have slight anemia, which is expected. I've been given Magic Mouthwash, which I'll probably start using very soon.

Everything you described is completely normal for what most OC patients endure while going thru rads w/ weekly Erbitux chemo. The very best thing you can do is focus on your intake. Every single day from today thru at the very least you hit the 1 year post rads mark you should be taking in at least 2500 calories and 48-64 oz of water every single day. This really will help make a difference in how easily you get thru this. Pay close attention especially on chemo days and the day after you want to push your fluid intake to help flush the chemo (poison) out of your body. I know its not easy going thru rads, especially if trying to work too but it can be done and unfortunately it is necessary.

PS... Please update/add your signature when you get a chance. It really is a big help in helping us to better assist you. I sent you a private message (PM)back when you first joined our group with a link that gives step by step instruction on how to ass your signature. Thanks!