Hi everyone, MERRY CHRISTMAS!
My husband was diagnosed with squamous cell carcinoma of the base of the tongue on Dec. 1, 2006. He began his treatment on Dec. 18. Chemo 1x per week for 7 weeks and Radiation 5 x per week for 7 weeks. I am overwhelmed by his diagnosis. He is young (42) and very healthy. Has never smoked or used any tobacco products. He has never even been sick! I am so scared for him as well as our sons, ages 16,14 and 12. Anyway, I'm new here and I just wanted to say HI and thanks for being here for me. I think I will need your support. Amy
Amy,
Welcome to the OCF forum. I'm sorry you have to be here -- especially to be in the position of joining on Christmas Day -- but you'll find a lot of support and help here. There are many of us who also ended up with SCC at a fairly early age without ever smoking, so we have a good sense of what you're feeling right now.
Take advantage of the wealth of information you can find about oral cancer on this site. It will help you gather questions you want to ask of your husband's medical team as you go along. It will also give you lots of good ideas about getting through the toughest parts of treatment. Feel free to post here as often as you need to get advice from others or just to vent.
Cathy
Amy
Sounds like they have caught it very early.
This is a roller coster ride for all family members. You and your family will have lots of support here. Great information. Keep your family informed of what Dad is going threw.
We have 12 and 15 year old boys. 4 years ago my wife had breast cancer, surgery and recovery I was worried for them then. Then I got this great Cancer. The kids will do well if they are informed of what is happening. Let them vent as well. Good luck and our prayers and thoughts are with you.
Amy --
Perhaps not the merriest Christmas for you guys but hang in there, and think of Christmasses to come.
Your son sounds like he could be one of the so-called "new demographic" for head and neck cancer, younger, non-smoker, cancer presenting in tonsil and/or base of tongue -- and most of these seem to be due to the human papilloma virus (HPV) (the same virus that causes almost all cervical cancer). If your cancer center has not already suggested it, you probably should get his tumor tested for this. It will not change his initial treatment but it improves his prognosis (HPV cancers seem more sensitive to chemoradiation) and also, there is far less chance of recurrence -- less than 15% per Dr. Maura Gillison (Johns Hopkins) one of the major researchers on HPV SCC.
If your center does not do HPV tests, a tumor sample or even the pathology slides can be sent to Johns Hopkins for testing:
http://pathology.jhu.edu/labservices/hpv.cfm Amazingly, despite quite a few papers in the last 5-6 years, a lot of doctors are unaware of this aspect of HNC. Dr. Gillison recently had a paper published on this "changing demographic" (You can also search this forum and the OCF web site itself for more info).
Not all non-smokers have an HPV cancer, but it probably factors in a majority of such cases, There are other causative factors, however, including certain pollutants, other viruses, genetics etc.
I know my husband was pleased to hear that his Stage III/IV cancer was HPV+, it made him more optimistic and that in turn made him stronger in getting through the rigorous treatment period. We just celebrated his second Christmas since he was treated, he is essentially back to normal and we are back to all our normal activities -- off birdwatching in Panama in a week, for example!
So hang in there and be strong for your son -- this Forum wlll be a big support in weeks and months to come.
Best of luck, Gail
Amy,
Sorry for your news but this site and it's participants will be very helpful to you and your family.
I also was a non smoker, social drinker, exercise nut and never sick a day in my life. That doesn't seem to matter to this cancer. What does matter is that he completes the Tx and you and your family give him the support that he will need. You also may/will need support as his caregiver which can be found on this site as well.
It is always helpful for us to know as much as possible about his Dx and his Tx. For example what type(s) of chemo; what type of radiation; what stage; where is he being Tx? That way people with perhaps the exact Dx and Tx can address your questions. You can add these particulars below your signature so that every time you post a question, readers will be able to see a much bigger picture and respond accordingly. It will also be helpful to interact with patients, caregivers and survivors at many different stages of Tx and post Tx periods.
Learn as much as you can and feel free to ask any question as in ANY QUESTION.
Amy - My son was also a non-smoker and only occasional drinker and diagnosed with SCC . He had his last radiation treatment on 12/21/06. This site has been such a tremendous support to us and I know it will be to you, too. You have definitely come to the right place! My son's doctor told us that they are seeing more and more younger people with this type of cancer and he also mentioned the HPV connection. Gail - your post about the prognosis for HPV type cancers was so encouraging to me as well. I'm going to find out about the HPV testing at our hospital.
Thank you everyone for your replies. Since we live in Maryland, we are fortunate to have Johns Hopkins Doctors on our team and they did tell us that this cancer is quite possibly related to the HPV virus. My husband got his
peg tube yesterday and had his second round of chemo today. He is receiving radiation 5x per week and chemo: Taxol and Carboplatin 1x per week for 8 weeks. His is a high grade stage IV tumor.
Hi everyone,
I was hoping to get some insight into the surgery to remove lymph nodes in the neck. My husband's ENT seems to think it will definitely be necessary and would like to shoot for late March/early April. The radiation oncologist told us yesterday that it may not be necessary if the lymph nodes continue to shrink. What can we expect from the surgery? How bad is it?
Hi Amy,
Sorry that you and Bob are going through all of this. I wish you luck.
As far as the neck dissection is concerned, it really was not a big deal in my case. Compared to the tongue surgery, it was a piece of cake. There was no real pain in that area during the healing, but there were a lot of stitches for about a week. A common problem after neck dissections is lymphedema. This is swelling from the build-up of lymph fluid in the area of the surgery, as there are not as many nodes available to move the fluids away. A good massage or physical therapist can help a great deal if this occurs. This doesn't happen to everyone and the occurence may be related to the number of nodes removed and therefore, the number still left in.
My scar is well hidden in the creases of my neck and is therefore almost invisible. I had an excellent surgeon and despite his expertise, as expected, I am still numb in the area of the incision. This is really no big deal and is certainly a small price to pay for the advantage gained from the removal of the nodes.
Please keep us posted as to Bob's progress and I hope my post has been helpful. Please don't hesitate to keep asking questions.
Jerry
Amy,
I had surgery first (partial glossectomy and modified neck dissection), followed by radiation. The neck dissection included the removal of many lymph nodes and, for me, was probably the least difficult part of the entire course of treatment. Most people here who have had surgery and radiation will tell you that their surgery was much easier to take than radiation. I do remember that my appearance shortly after surgery was pretty scary to some of my family members, but I'm sure I looked worse than I felt most of the time, and the incisions healed rather quickly.
Cathy
Amy:
Your husband's Dx and Tx regimen sounds like a carbon copy of mine. I was Dx in April this year and began rad and chemo last week of May. Completed Tx end of July and had first CT scan in early september that was clear. Just had second CT last week and clear again! I had the neck dissection with removal of large mass of nodes and tissue and left with a 3" incision on 9/20 and all was clear! No real problems with neck at all. Incision was glued and it's hardly visible already. The immediate area is still numb and my ENT says may stay that way up to a year.
The entire ordeal is trying for the entire family but you will survive and be stronger for it by time it's over. If like me, the PEG tube was perhaps the overall worst thing to deal with. Husband needs to keep swallowing as much as possible during Tx to keep things working.
Bill D.
Amy
I had right side of neck taken cancer had masticide on one lymp node, When threy were in there they hit muscle which help raise and lower my right arm. It not that big of deal, but can not do my job because of it. Still can pick my nose. Hope the radiation will shrink it you will not need surgery. The Radiation was worse worse than the sugery. Being that for me now this took place in 2005, it does not that bad at all.
I did not choose the peg, and lost 110 lbs that sucked. I needed to loose a little but went past my goal by 60lbs. Everything but my arm is OK
Good luck
Chris
Amy,
I should have mentioned that I needed about 3 months of physical therapy in order to regain full function of my left arm. I had stiffness and limited raising ability due to damage to the nerves and muscles on that side. All the fucntion did return, but required twice daily exercises in addition to the PT.
Jerry
Hi Amy,
Your husbands condition sounds just like mine. His treatment regimin is exactly like mine. 35 Rad traeatments, 7 to rounds of Chemo. I was lucky to have the peg and very little problems with it. It is no fun to use, but makes a world of differrence. It saved my life. I lost over 80 lbs. The worst part for me was the every day radiation. My burns were quite bad. Xlcair or other prodcuts will help his skin.
From my understanding, the only way to tell if the cancer is gone is through pathology. The patholgy can only be done once the lymph nodes are removed. A CT scan will only show a million cells or more. When my wife & I figured this out, the surgery was a no brainer for us. I had little or no nerve damage. PT once or twice a week for two months cleared any problem up. I started lifting weights two weeks after my neck disection. I still have little or no feeling on the right side of my neck, but the scar is hardly visible. No one notices unless I point it out.
It will a tough fight for your husband, but at his age, he can handle it. We are here to lend support when you need it.
Steve
Amy,
I was treated at Moffitt Cancer Institute, a CCC, and was told surgery was not needed so I hope they are correct.They did say surgery would still be an option if the chemorad didn't work.
Amy,
I was standing in your shoes about 18 months ago. Ken had lymph nodes removed on the right side of his neck and 5 came back positive. Overall, the surgery was not a cake walk. Ken had to have his jugular vein tied off on the right side because one lymph node was tangled around it and he had to have another one 'scrapped' off the base of his skull. I wanted to mention this because you need to know what questions to ask about any medical procedure (pros/cons). The surgery was painful, but Ken recovered very quickly from it. Ken is a fishing guide and we both talked to his ENT about how critically important it was for Ken to keep his arm mobility.
I encourage you to read through the "getting through it project" section of this board. You will see many postings about 'what I wish I had known' - many from the caregiver's perspective.
Hang in there. You are not alone in this fight. We are all right here any time you need to chat.
Carol R.
Amy,
My new husband of 2 months has exactly what your husband does and the treatment is the same. He had a radical neck dissection on both sides and they removed an 8 cm. tumor - He is Stage IV and is into his 2nd week of chemo and radiation. The neck dissection was a cake walk for him - I'm so afraid of the radiation as I have been doing an extreme amount of research - I have been watching this sight and find it very scary, but know that I'm not alone. Does anyone have any info. on the hyperbaric chamber? They use it for head/neck cancer from the research that I have done, but don't have any comments from anyone that has used it.
Paula
DEar Paula, I think you need to do more reading on the hyperberic chamber. It is used [in my understanding] to promote the healing of wounds that otherwise will now heal. We have been told that patients who have any residual cancer or have not been declared totally cancer free are NOT candidates for the chamber because it would accelerate the growth of cancer cells. And while radiation is a scarey thing, it is doable and as many people here will tell you, one can recover and go forward to a good life. Wishing you all the best luck. Amy
Paula,
Post your own topic re radiation concerns and you will receive tons of replys.
It's also best to describe your H's Dx and Tx under your signature so that each time you post you won't have to repeat yourself and the readers will be better able to respond. Simply go to My Profile and either add your signature or edit it.
Also you can do a search on just about any topic like the chamber but Amy is correct. It is most often used my Oral cancer patients after cancer free to promote gum healing, etc.
You and your H will have many questions during his Tx and this site will prove as valuable as any doc or med you come in contact with.
David,
I'll be happy to do that, however can you help me with the abbreviations?
IMRT x 35...what is that?
Cisplastin x 3 concurrent...what is that?
Tx....in my world stands for Texas, what is that?
any other abbreviation explanation would be helpful.
Paula - If you go to "Forum Home" and click on the "Getting Through it Project" you will see "Glossary of Terms" which gives a whole list of abbreviations for terms used. IMRT = Intensity Modulated Radiation THerapy. x35 means the person had 35 treatments. Tx = treatments. Cisplatin is a chemotherapy drug that is given for some types of cancer. Not sure if this last one is a correct or complete enough definition - maybe someone else can correct this or give a better one.
Goodmorning Paula and Happy new Years to you and your family.
I recently finished (july) 39 hyberbaric oxygen treatments in Buffalo. HBO treatments are not used in the treatment of head and neck cancers. Hbo treatments are for those of us who develope osteoradioncrosis after radiation treatment to the jaw area. Osteioradioncrosis is just a fancy name for "bone death" which occurs after prolonged radiation. Fear not it does not happen to many of us , I think about 10%. Your husband may be a candidate if he is having dental issues after his treatment (this is why they pull many teeth before radiation). I asked all of those questions about the re growth of cancer cells, I had finshed rad. and chemo in december 2005 and neck dissection in January 2006 , began HBO in May 2006. I recieved many opinions from ongologists, oral surgeons, HBO specialists etc. and about 9 of 10 said it was safe. One Dr. said to wait at least two years of being cancer free, unfortunately the ORN to my jaw was not waiting. That brings us up to the present, I am doing great , no more jaw/tooth pain, great check-ups from all my docs and on January 11 I reach the 1 year plateau. I will see you all there ,I will be reaching back to lend a hand to those on the path behind me. Hang in there, all is well. Keep pushing ahead.
Lenny
Lenny, Thank-you for your great explanation regarding HBO Tx. I'm hoping that I don't fall into that 10% you were refering to. Did you need jaw replacement surgery or did the HBO Tx. take care of your jaw.
Thanks for your participation and wishing you well.
Mark D.
Amy --
If you husband is being treated at Hopkins then post-treatment they will do a number of thorough exams (including PET/CT scan) and determine if he has what is termed a "complete clinical response" (cCR) -- that is, the treatment appears to be successful with no residual cancer found. At that point you may well get conflicting recommendations about the ND (we did) -- the ENT being in favor and the MO and ROs much less so. Many patients decline further surgery at this point, and I get the strong impression that this percentage is increasing.
If the post-treatment exams/scans indicate residual cancer then it would be a different story.
Gail
Mark ,
all went well, a few teeth pulled afterwards but that was the goal anyways, I could not have had those troublesome teeth pulled without the HBO. Had some temporary myopia as a result of HBO and that was a pain in the neck/ass having to drive 140 miles round trip for treatment every day. Ohh well all is well today and is most days. Hang in there all of my friends.
Lenny
Hi Amy,
When you say that many patients decline the neck disection and that you feel the percentage of patients doing this is becoming greater, are you talking about the patient population at the hospital that treated your husband or do you mean head and neck cancer patients in general??
I was told by Moffitt Cancer Institute a CCC before my Tx that the current thinking is that the patient is no better off with the ND and chemo rad than with the ND and chemo rad. They did not recommend dyrgery for me and I followed their advice and I hope they are/were correct.
David, I also did not have a ND.
Mark,
Your OLD SCHOOL. I mean the dinos were still roaming when you were treated. LOL
Hi Minniea --
I think your question was really for me (not Amy) as her husband is not at the decision stage yet for a ND.
My comments referred to ND in general, at least this is the impression our MO brought back from the ASCO meetings this past summer, where benefits from ND was apparently a "hot topic." She said ND is falling out of favor (that's a quote) because more serious side effects are being seen with no significant benefit -- e.g. paper from Fox Chase showing doubling of time on a feeding tube in ND patients. Certainly some top CCCs (e.g. Sloan-Kettering, ranked #1) no longer routinely do ND.
As many of you may have read, my husband did not have a neck dissection as none of his doctors save the Hopkins ENT recommended it -- and now even he agrees Barry made the right decision, for him.
However, Barry did have a pre-treatment radical tonsillectomy by another ENT, which was when his cancer was diagnosed. The tonsillar cancer was his primary though he also had nodal involvement and base of tongue. As with many (most?) non-smokers with tonsillar/BOT cancer his was strongly human papilloma virus positive.
The latter is an important point. There is a great deal of ongoing research on HPV+ cancer now and they are finding far less recurrence, better response to treatment, and better long-term survival in HPV+ SCC. Barry was entering the Hopkins HPV vaccine trial and of course well up-to-date on this information. This undoubtedly played a role in his decision to decline ND (and it was always his decison). Since he had an apparent successful respose to treatment, the doctors did not try to compel him into surgery, though I am sure if his post-treatment scans had indicated failure of treatment the consensus recommendation from his "team" would have been quite different.
A number of papers have shown little benefit overall for ND but some have indicated that a subset of patients show improved locoregional control (about 5-10% per both our ENT and RO). Our RO added, but no long-term survival advantage. Other papers have shown improved survival in patients with residual nodal disease, as indicated by post-treatment scans or exams.
One problem, and this is highlighted in Dr. Gillison's editorial in Dec. 2006 Journal of Cinical Oncology, is that many studies comparing treatment protocols do not know HPV status of the patients or do not restrict the experimental groups to one type or another. This can greatly "muddy" the results, since the two cancers are biologially different and could respond differently to treatment, possibly even including benefits of neck dissection.
So right now this appears to be a changing scenario, which makes it dificult for patient to make a decision.
Gail
Hello Everyone - this will be lengthy as I am very tired and spent...no one seems to understand but this message board. My husband, Jim has finished his radiation therapy a week ago. You would think I would be ecstatic, but I'm not. His condition has worsened. We went yesterday for the feeding tube - he is a large man - 6' 1", weighing in at 270 when we started this. Now he weighs in at 230...you would think that would be enough to sustain him, but he is unable to control the nausea and yeast infections. I spent all day in the hospital w/ him getting the feeding tube and then they sent us home without instructions...other than see your Dr. tomorrow. So, our Dr.'s nurse flushed the tube with water, showed us how to flush food thru the tube. When I asked what food, then she said to see the nutritionist...It has been 3 days since he has had any nutrition and other than the fluid IV's we'll probably be in the ER this weekend again getting fluids. I called the nutritionist, she's out sick, so his radiation nurse said to give him Boost...well, we have been doing a can over the past 2 hrs. and he has thrown it all up...I'm so emotionally drained right now that I cannot imagine another day of this. My H is not being whiny or complaining, but he is very private and since we have been married (a whopping 4 months - yes months), he has had to reveal so much of the bodily functions not to mention what it has done to his male ego. I am just rattling right now as everything that is posted on this board is what is happening - only his nausea and yeast infections seem to be more prevalent than most. Thanks to everyone for posting so much personal info. on this message board..it really helps.
Paula
Paula,
be patient. What he is experiencing now is pretty much SOP. Most all of us had our condition worsen for several weeks post Tx. The radiation keeps on working even though the beam(s) are "off". It IS very disconcerting for caregivers to watch. I lost over 60 lbs myself, and certainly my libido, for a time, but it ALL CAME BACK and is even better than before (I think that the body shuts off all unneccessary functions when in survival mode). I had nausea constantly and many bouts of thrush. I hold the record at UCSF for the amount of Diflucan I took. This is rather common also. Just take it one day at a time and stay in the now. get some counseling for yourself and take good care of yourself - eat well, get enough sleep, find diversions from cancer. It will pass. He will get better.
Many here have have better results with "Jevity" for PEG feeding and it is a prescription food so your insurance may even cover it.
I didn't have a PEG but some have suggested a slow, drip type gravity feeding, using a bag, might help mitigate the nausea somewhat. Sitting up while feeding may help also.
There are many anti-emetic drugs to choose from - talk to your MO about that. Keep that PEG tube flushed out and if giving any meds through the PEG, especially pills that you have to crush, insure that this is acceptable with the pharmacist. Some meds are time release and crushing them can cause an overdose.
I am going to move your thread to it's own place in "After Treatment Issues", so it doesn't get buried in Amy's thread.
Paula,
Usually the 2 to 3 weeks post Tx are the worse for everyone. I didn't have a Peg and I wound up in the hospital in my 2nd week post Tx. Around the 3rd week was when I began to notice I was walking out of that dark tunnel for good. Even then he will have bad days so don't think it's a relaspe. That period of good days and then a bad day lasted for about 2 months but remember we can all react differently.
As far as wieght loss, I lost 30% of my body weight without the Peg but I am now 6 months post Tx and I have regained all but 10 pounds and I don't think I want those back anyway.
Try Carnation Instant Breakfast VHC. It has 560 nutritionally balanced calories in a 8 oz can and helped me tremendiously when getting the most bang for my buck so to speak was important. You don't need a prescription but you order it through your pharmacy, like Walgreens or CVS. Remember to specify VHC and 560 cals.
Like Gary said, be patient. I know that's easier said than done but all of us experienced the same things that he and you are going through now and we were all told the same things we are telling you now. It will get better and better but like in baby steps, not leaps and bounds. One day he will notice an improvement and he will feel like this is it but he may not see another improvement for a week or so. Improvements will come though. Six months ago I wouldn't have thought I would feel the way I do now. I also wished it hadn't taken 6 months but that's just the way we all heal from this barbaric treatment.
And it's OK to complain, we all did.
David, I moved this thread to "After treatment Issues" becuase it was hijackinng Amy's thread. Please respond to it in that topic instead. That includes anyone elso responding to Paula and not Amy.
Well, it's been a while since I've posted anything, but believe me, I've been reading the board. Jim is doing much better - he finished RAD on 2/14, had a PEG installed on 2/17 and had it removed 3/1. Didn't work for him. Then to add insult to injury, the hole in his belly wouldn't heal. Went to the oncologist, she sent him to regular Dr., gave him more scripts, then had to go back to oncologist, and we were then forwarded to a wound care treatment center. Nothing seemed to work to get this thing healed. So, here it is on July 2nd, and Jim started fiddlin' with the wound with some tweezers and guess what??? They left a tack in his stomach...he pulled it out himself and the hole is closed:-) Yeah! What a fiasco...well now we go back to the Dr. on 7/19 to find out results of the PET. Keep us in your prayers!