Latest Head And Neck Cancers discussions http://www.cancercompass.com/message-board/cancers/head-and-neck-cancers/1,0,119,39.htm Wed, 23 Jul 2008 00:00:00 GMT Wed, 23 Jul 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ My husband was treated with cisplatin and 5FU. He's 9 weeks post treatment. His Pet scan is clean but we are noticing short term memory loss. Just finished crawling the web for info. There was a study published just this April linking 5FU specifically to "chemo brain" or "chemo fog". They say the side effects get worse over time. So, I'm left asking why our doc chose this regimen over the multitude of other chemo cocktails. My suggestion to anyone being told they will be given 5FU is to ask questions...why 5FU, is there an alternative....better yet, get a second opinion. http://www.cancercompass.com/message-board/message/all,26321,0.htm oceanglory Mon, 21 Jul 2008 00:00:00 GMT My husband's first PETscan, 8 weeks post treatment came back clean. He's scheduled to have g-tube removed on Friday and the port-o-cath in a couple of weeks. I've warned him about rushing into removing the feeding tube....especially since he just went through a bout of thrush...I mentioned Surferboy having his tube removed only to wish he had it a few days later....but he's very anxious. Today he was trying to relate a story to me he had just heard not 15 minutes earlier only to find that he could not remember the names nor the story. I've noticed lapses in his memory lately. He forgets names and words remain on the tip of his tongue. So back to the message board I go having remembered seeing the term, "chemo brain". Just when you think you are on the road to recovery, another obstacle gets thrown in your path. We have an appt with ENT tomorrow so now in addition to drug withdrawal, swallow therapy, and physical therapy, I need to get my husband into cognitive therapy. We had such a great meeting with the oncologist today, that I hate to tell him he has yet one more hurdle. This sucks but he's alive. To all those who post on this board, THANK YOU!! The docs only give you half the story. The rest of it is here. http://www.cancercompass.com/message-board/message/all,26315,0.htm oceanglory Mon, 21 Jul 2008 00:00:00 GMT My husband is 7 weeks out since his last radiation treatement.The Dr. said his mouth would heal very fast.He did have thrush during treatment and was given antibiotics. Well, he still has a sore mouth while some of the larger white patches (which the Dr.said was mucousitus),  have seemed to clear up, he has now gotten some new small white spots at the back of his throat.When do these go away.  He takes really good care of his mouth, flossing, rinsing, brushing etc. throughout the day.I was just wondering if he should take some antibiotics.ANyone with this problem.Thanks http://www.cancercompass.com/message-board/message/all,26279,0.htm SherG Sun, 20 Jul 2008 00:00:00 GMT Hi everyone, I've been lurking around this site for years when my mom, who passed away a year ago of lung cancer, got very sick. Thanks for all of your invaluable cancer info and first hand experience firstly. Two weeks ago something devastating hit our family again...my only sister who just gave birth 5 months ago, developed a left neck lump. She did a needle biopsy(which we were told is ~ 90% accurate) that came back fatty tissues. Then she had it removed regardless and the surgeon had the lump sent to pathology. First report came back negative. But a week later we were told that the original report was wrong and that the follow up test/stains they ran supports the diagnosis of Metastatic Carcinoma of Unknown Primary.(squamous cell carcinoma)We were then referred to a ENT doctor who took 2 samples from inside of the nasal for biopsies purposes in his office; first one came back "supspicious" while the 2nd one came back negative. The next procedure we did was a whole body Pet scan + CT of the Head and neck,  chest, abdomen and pelvis. Now here are the results that are really bothering us and confusing: The whole body Pet had 4 hot spots lit up, one near the posterior naso-and oropharynx, "likely representing post-biopsy inflammation", SUV 3.5.  Second hot spot was in the area of where the neck lump was removed, SUV 2.2.  Third spot was near the midabdominal focus(retroperitoneal lymph node?) with a peak SUV of 4.2. The last hot spot was near the right external iliac lymphatic station and right acetabulum with hypermetabolicuptake SUV of 7.2 - 14.2 (very high we were told) CT scan did showed the abnormal lymph node around the neck, but NOTHING in the chest, abdomen, and pelvis area. All organs were clean from the CT. Now we also did a colonoscopy and the dr. did not find any tumors, but "mild infection with the likelihood of granuloma" inside of her colon.We just got back from her oncologist this Fri and we were told that this is probably a late stage Head and Neck Cancer case. He recommended my sister to have Carboplatin asap as palliative treatment. I politely asked the doctor that is there any slight chance that the 3rd and 4th hot spots could be due to infection/inflammation and that the Head and Neck cancer was still localized in the upper neck area(since CT did not find any enlarged lymph nodes below the chest area), and he said No Chance because the SUV uptake values are too high and that this is a "very aggressive" cancer. He said radiation treatment, which I thought was the primary treatment for many Head and Neck cancers, is useless in my sister's case because the cancer has already spread. I guess my question is: if the cancer did spread to the lower body lymph nodes, would they show up in the CT scan similar to where the radiologist found in the upper neck area?I just want my sister to have the best treatment option possible for whatever she's dealing with...and she's showing absolutely no signs of being sick except for the enlarged neck lump that was removed. Also, would the delivery of her baby(C-section) 5 months ago have anything to do with the high Pet FDG uptake? One last puzzling thing is that months ago she did develop an enlarged lymph node near her right groin(near where hot spot #4 was seen in Pet) but it went away completely. Does that mean her body is constantly fighting some kind of low-grade infection since cancerous lymph nodes usually don't go away? Her doctor does not seem to think so though, even with the colonoscopy report suggesting possible granuloma in her colon.I want to thank everyone for any possible input in advance. I'm really not looking  for anything to support my own "wishful think" theories here, but just want to see if anyone had seen any Head and Neck cancer case(s)  in which teh primary tumor cells could  metastasize to the lower body Lymph sites whose presence could not be detected by Ct scan. Thanks everyone again and I'm grateful to have the opportunity to be a part of this community. I wish everyone and their family the best health and happiness.Kenny      http://www.cancercompass.com/message-board/message/all,26274,0.htm Kenny C Sun, 20 Jul 2008 00:00:00 GMT First my husband John had tonsil cancer in 2002, Stage 4, with surgery, radical neck dissection chemo, radiation his recent PET Scan came back cancer free, but left vocal cord was parallysis doing surgery, the right they say is closing because of radiation after effects, and he will need a trach.has anyone had this problem and are there any treatments for radiation side effects.    He was just in the hospital for aspiration pneumonia and now has a  feeding tube  and cannot eat anything by mouth, he is on second set of 12 vitastem to help swallowing that he has just lost. Any info will be appreciated    http://www.cancercompass.com/message-board/message/all,26196,0.htm patjohn Fri, 18 Jul 2008 00:00:00 GMT Well we got more good news today. We went to see the Head and Neck Surgeon. After he looked at the PET scan, he told my husband that he didn't need the neck dissection. We were thrilled because on our last visit with him before the treatments started he said he would do the surgery regardless what the scan showed. When I asked him why he changed his mind, he said he didn't expect to get such a clean scan. He said there was nothing to remove because both the tumor on the tonsil and the lymph node were gone. I also asked him what the chances of a reoccurrence would be if he didn't have the surgery, as opposed to having it, and he said the same. He will have another PET scan in 3 months (it's every 3 to 4 months for the 1st year and then 6 months for the next year - after the first 2 years he will have the PET scan once a year for the rest of his life)My husband is telling people that he hit the lottery today because that's how he feels. I guess we'll enjoy this feeling until the next scan (hopefully they'll all turn out good)Also, my older daughter got engaged last week, so we will be planning a wedding. The news couldn't have come at a better time.Sorry for rambling on, but this is the first time since January that we feel truly good about things.Thank you everyone and God Bless,Carol http://www.cancercompass.com/message-board/message/all,26182,0.htm capp519 Thu, 17 Jul 2008 00:00:00 GMT Has anyone had this side effect from radiation treatments. The Drs want to do a mandibular reconstruction of his jaw bone - 14 hr surgery and 2 weeks in the hospital.  Are there any other options? http://www.cancercompass.com/message-board/message/all,26167,0.htm money Thu, 17 Jul 2008 00:00:00 GMT Hello everyone,I've been reading and posting on this site since I found out that I had base of tongue cancer in the Spring 2008.  It has been a great source of knowledge and comfort to me.I had radiation for BOT which ended in late May.  Went it without a peg but was always able to swallow, thank goodness.   I believe in general I'm doing ok without any really big problems.  The small ones I was able to tackle with the help of this site and the treatment center.  I still have a long wasy to go but am hopeful that my PET will be clear. Question---Do you continue to have a feeling of a  small ball, lump, stone  (best way I can describe it) where your tumor was?  I do the gargle with baking soda/salt, Biotene many times a day.  But this feeling that there is SOMETHING caught in the area of the tumor continues. I was checked by my oncologist, and have an appoitment wih my ENT in two weeks.  The oncologist could not see anything and told me not to worry.  But it feels so strange and of course worrisome.Any  help would be greatly apprectiated.  Best, D. http://www.cancercompass.com/message-board/message/all,26118,0.htm D1211 Wed, 16 Jul 2008 00:00:00 GMT My husband had his PET scan on Friday. The oncologist called this morning. Everything is fine!!!! No cancer and the tonsil tumor and lymph nodes in the neck are gone. We see the surgeon on Thursday to see if he needs the neck dissection. Thanks to everyone for your continued support.Carol http://www.cancercompass.com/message-board/message/all,26099,0.htm capp519 Tue, 15 Jul 2008 00:00:00 GMT has anyone else experienced shaky hands during and after treatment?  my guy is almost 12 weeks finished now.  1st he thought the shakes were the pain drugs (duragesic and oxycodone).  he has been off all pain meds for about 2 weeks now.  his doctor isn't sure what it is the cause and wants him to have a thyroid test...not sure what the connection is.any comments/experiences would be greatly appreciated! ~meesh http://www.cancercompass.com/message-board/message/all,26084,0.htm meesh Tue, 15 Jul 2008 00:00:00 GMT First of all, I'm new here and would like to thank everyone for all of the great informative posts. I have learned much more here than anywhere else. My husbund just finished his second round of chemo (Cisplatin) - one more to go - and is going 5x a week for radiation. He had to be rehydrated on Friday, again today, and they want him back again tomorrow for rehydration.  His problem is of always feeling full. When he was eating by mouth he complained that it always felt like the food was being blocked by something and not going down right, and also of feeling full and bloated all the time, and had discomfort in the diaphram area. He recently started using the PEG because of  his dry, sore throat and because the taste of anything - even plain water makes him ill. The feeling of fullness and bloatiness is still there using the PEG. He's dropping weight almost daily because of this. He should be doing at least 7 cans of the Jevity, but on a good day he's getting in maybe half that and nothing anymore by mouth. Has anyone had this problem of constantly feeling full and bloated?  If so, any tips on what to do about it?Again, thank you all for the wonderful information here. What a great site this is!  It took some searching to find it, and I'm so thankful that I did. Karen http://www.cancercompass.com/message-board/message/all,26068,0.htm bermuda Tue, 15 Jul 2008 00:00:00 GMT Hi Everyone -I have been lurking for about 5 weeks since my husband first heard the initial diagnosis of tonsil cancer.  After two biopsies, things are finally starting to become clear.  We don't have all the details yet, but the guess is T2a N2 and the rest to be discovered.  You have been my life raft already.  By reading all of your posts, I have known what to do, despite a very lacadaisical and disorganized ENT.  for instance my husband has had weeks of dental work to do, and without all of you I would not have known we needed to do that first, and treatment would have been delayed even further. THANK YOU!Anyhow, we have final met with the radiation Dr.  Have appts. for his PeT and CAT scan on Wed.  We still need to meet with the medical oncologist. With this limited info, it looks like he will have 20 sessions of M-F radiation treatments on his right tonsil and nodes, then 8 sessions of 2 times a day.  The medical oncologist will tell us how much chemo.We own a very small business, and my husband has always been very physical. By what we've read, he might be able to keep that up for the first two weeks, but after that it will probably be too much for him. Being laid up is going to be difficult for him, so I am trying to think of what he can do, weeks 3 -? so he can remain a part of everything. Do you think on average, he would still be able to work on his laptop in bed.  He loves working on our website and making videos - perhaps this would be a way he could pass the time.  Do you all think this is a reasonable goal? Any help you all can give in helping us understand how this journey will progress is greatly appreciated. Best, Lee Anne http://www.cancercompass.com/message-board/message/all,26057,0.htm LeeAnneFlies Mon, 14 Jul 2008 00:00:00 GMT Has anyone had to do this?  My mom is 10 radiation tx away from the end (she was extended due to a later PET scan).  She finished the 30 treatments to her face, she has maxillary sinus cancer and has had 11 rads at her neck.  She was doing great until the July 4th weekend and she got so incredibly weak and developed an infection and wound up in the hospital.  She is so different than just a week ago that it scares me. The infection is clearing up nicely, but she just has horrible mucus and coughing all the  time. She is 75, but very active and ambulatory on her own prior to this treatment.  She is now nearly bed-ridden needing 2 people to assist her out of bed and seems totally out of it.  She does have a Fentanyl patch and takes other pain meds which I'm sure are adding to her "loopiness", but she is really down and out.The doctors want to meet with our family ;this week and discuss stopping her treatments.  They say my mom said she wants to stop them.  I can't even imagine my mom saying that and she said she doesn't even remember talking to her doctors.  She is really drugged up and doesn't remember what day it is, yet alone making a decision like that!Her labs are good, she's well hydrated, she gets all nutrition through her PEG.  Medically she seems stable for finishing up, but I am worried about the loss of strength and weakness.  Is this normal for some people to be this affected by radiation?  She did finish her 7 doses of Carboplatin last week.    They can't even discharge her to home in her current state and are looking for a short term care/rehab place to take her.  I agree she needs rehab to walk again and gain strength back, but is that realistic while still getting radiation?  I just want her to finish up so she has the best chance of beating this.       http://www.cancercompass.com/message-board/message/all,26056,0.htm Susan614 Mon, 14 Jul 2008 00:00:00 GMT i am 2 months out from tonsil cancer40 Rx and 3 chemo (cysplatainmy neck seems to be getting tighter everydayand my skin seems tight as well what should i be doing???lotion, exercising?? thank you, john,  http://www.cancercompass.com/message-board/message/all,26048,0.htm mtkjohn1 Mon, 14 Jul 2008 00:00:00 GMT My mother has recently been diagnosed with a glioblastoma IV tumor of the brain.  In the two weeks she has been home she has deteriorated quickly......her right side is almost useless. The first week she was home she could still walk with assistance, but the second week she cannot use her right side.   I have been trying to find information on the internet about the growth rate of these tumors and have found nothing.  Does anyone have any information?   I know that it's fast growing and a very aggressive tumor, but I'd like to know more.......  http://www.cancercompass.com/message-board/message/all,26015,0.htm beachlvr0804 Sun, 13 Jul 2008 00:00:00 GMT My partner had a total laryngectomy Dec. 11/07 he chose not to have radiation and chemo and do things alternatively.....didn't help a bit and another tumor arose near the original one, 7 months he is now completed one week of radiation and one chemo visit out of 3 with Cisplatin.  He also got a PEG tube inserted in the stomach last week so it was a painful time. Now into his first weekend after the Mon-Frid radiation for 7 weeks, he is starting to find it very hard to talk, more gas in the stomach, he uses a TEP instead of an electro larynx. Each day he drank aloe vera juice before and after radiation to hopefully protect the esophagus a bit from burning, so far that has helped but it's only the first week, we also dab it on the neck skin and on the tumor. Now he is saying that he feels his throat constricting and harder to swallow, he is using the stomach tube for feedings with Boost Plus and trying to continue drinking. It is hard for me as well as I had to leave him today to travel 6 hrs, back home to check on the house and look after the cat.....he can't talk on the phone very well if at all.  He is going to Roswell Park Cancer Institute each day, within walking distance. My concern is, has anyones esophagus closed up that much to prevent eating at all? He is an hourly swish with baking soda/salt as prescribed. But he's only in his first week!!!!!! I am terrified what will happen in weeks to come.  Michele, his partner and caregiver.  http://www.cancercompass.com/message-board/message/all,25979,0.htm Caregiver Michele Sat, 12 Jul 2008 00:00:00 GMT last week my s.o. had his first post treatment scan...everything in his head and neck looked good (unknown primary- stage IV) there was one enlarged lymphnode but they weren't too concerned with it...the surgeon could feel it, it was soft and moveable.  they did scare the crap out of us by saying that he had an area on his spine and his prostate that lit up...the doctors asked if he had a recent back injury - he did wrench his back on a mad dash to the bathroom to throw up during treatment...his back was very sore for weeks after.  both his doctors think that is what caused that to light up.  this week he had a PSA test done and the numbers were better than normal so they feel that his prostate is ok.in 5 weeks he will have another scan done.  i know that PET/CT scans are not always accurate - he has had chest things show up in the past that they are not concerned about.  i am trying to not worry...but man it's hard not too.he is 12 weeks post treatment now...and finally starting to feel better and gain some strength.  we are anxious to get our life back!!!~meesh http://www.cancercompass.com/message-board/message/all,25960,0.htm meesh Sat, 12 Jul 2008 00:00:00 GMT Hello! Quick question...has anyone tried the Mass XXX from GNC for getting the essential caloric intake?  Didn't know if it is recommened for drinking or the PEG tube?  Or should we just stick with the usual ensure, jevity, nutrin, or two cal?  The mass XXX has 750 calories per serving and little sugar but many amino acids such as glutimine.  Thank you all and God bless.Molly  http://www.cancercompass.com/message-board/message/all,25938,0.htm waves7 Fri, 11 Jul 2008 00:00:00 GMT what have people tried that workI am fighting depression from my SCC of the Rt tonsilbeen post Tx  8 weeksI have been on Lexapro and did not seem to be doing much so i was put on Wellbrutinreally made my dry mouth bad not worth itI am going to stopthank you john  http://www.cancercompass.com/message-board/message/all,25930,0.htm mtkjohn1 Fri, 11 Jul 2008 00:00:00 GMT Hello, My futue ex-husband is 18 months post treatment for metatistic SCHN unknown primary and was treated with radiation and some chemo.  Since the treatment ended, he has recovered remarkely well, with the exception of losing 50 pounds, and some throat irratations, mouth dryness and sores.  However, his whole personality has changed drastically and since returning to work is having a hard time learning and retaining material.He has a very high level stress project manager job and works for a good company, however, they are now putting him on probation.  I was just curious if any other patients have gone through this?  He went back to MD Anderson (where he was treated) and they ran some tests but we won't know until next week the results.  I guess the drs, are thinking that his cognitive skills have been somewhat hindered..  This is quite a worry for all involved.  His job is in jeopardy and although it is unfair, I don't think this major company really cares as they have gone through several layoffs recently.We are very thankful for his cure.  Any thoughts or comments would be greatly appreciated.  Thanks. http://www.cancercompass.com/message-board/message/all,25912,0.htm Littlegirl Fri, 11 Jul 2008 00:00:00 GMT Hello. I had a surgery for SCC of the left tonsil and 3 lymph nodes were removed 4 weeks ago. I am starting my radiation and chemo in 4 days.Please tell me some good outcomes, since I've read too many horrible sotries here already.  Are there people out there that went through the treatment and are able to live normal life now?Thank you.Zhanna   http://www.cancercompass.com/message-board/message/all,25909,0.htm Zhanna Thu, 10 Jul 2008 00:00:00 GMT My husband is little over 2 months post chemo with 3 rounds of Cisplatin for SNUC.  He has just started to complain of burning, tingling and some numbness on the bottom of his feet.  It occasionally travels up his legs.  He has also noticed similar sensation on (L) upper arm.  I understand this is from the Cisplatin- is this permanant or will it subside?  What has worked for you to relieve the discomfort?Kathy http://www.cancercompass.com/message-board/message/all,25908,0.htm scootie45 Thu, 10 Jul 2008 00:00:00 GMT First I want to thank all of you, especially all of you "regulars" who have taken the time to answer questions and share your experiences here.   I have never posted a message before but have been following you all religiously since my husband's February diagnosis:  SCC base of tongue w/ bilateral lymph node involvement.  I am amazed at the courage, determination and genuine compassion I've found here on these boards.  My husband has gone through 9 weeks of chemo induction (Cisplatin,Taxotere and 5FU).  He began 32 radiation treatments( with weekly Cisplatin) June 3rd and is 6 treatments away from finishing! ( Next Friday!)  We've gone through pretty much everything you all have experienced from both patient and caregiver's side.  He's learned to adjust weekly to each new "experience", joking today in a bare whisper, with the radiation oncologist that he had "perfected the art of coughing up mucous"!  (We've embraced the idea of maintaining a sense of humour throughout this process- its helped... most of the time) My question is this: I've read from many of you that the 2-3 weeks post-radiation is worse than during the treatment.  We've been feeling very optimistic because he's handling the treatment better than we expected - He's obviously coughing and choking up the, as he says, "silver dollar size mucous", waking up many times at night to do so. He's been dehydrated twice since he began using the feeding tube at week 4, and once spiked a 103.5 fever w/ dehydration that landed us in the ER at midnight (July 4th) but we've got that under control now with some intense fluid hydration and getting accustomed to the feeding tube ritual. He's controlling his pain pretty well w/ oxycodone and a duragesic patch. And of course the baking soda and salt rinses and taking glutamine and swallowing patented aloe vera juice(Manapol from Carrington).  He's been applying the gel from fresh cut aloe leaves 4 x a day on his neck and supplementing that with Remedy healing ointment-.  He is fatigued and does nap frequently. So, what I'd like to know, and be prepared for, is what the 2-3 weeks post treatment is like and what makes it worse than what we're dealing with now at week 6?The one thing that's gotten us through so much is that I've been reading all of your posts and have been able to anticipate what's next and share that with him.  Anything  you could share would be very appreciated!   We wish all of you the very best! Thanks so much!Christina http://www.cancercompass.com/message-board/message/all,25906,0.htm spiritheart Thu, 10 Jul 2008 00:00:00 GMT Hello Everyone,  My stepdad was diagnosed with stage 3 SCC of the right tonsil at the beginning of June.  Everything has happened so fast since then and he is already completing his 4th week of radiation and 2nd week of chemo this week.  During this time, I have been so happy to have found this discussion board and read everyone's helpful suggestions/comments and words of encouragement.  My mom is the primary caregiver and I live about 4 hours away from them.  I have been visiting on weekends to help out around the house and pass on the experiences from those of you on this message board.  My parents don't have a computer or internet, so they are unable to see this firsthand.  At first my mom was happy to hear the stories and find out that there is life after all of this and what to expect during this process.  Since my stepdad is halfway through, the side effects (pain/dry mouth/mucus) have really increased.  He is getting is PEG tube today since he has been losing weight.  I relayed all of your helpful suggestions to my parents regarding the PEG and everything else from gargling with baking soda/salt solution, drinking slippery elm tea with good raw honey, to taking glutimine and juven.  Now both of them are sounding very discouraged and depressed and wondering if treatment was really a good idea?!  My mom says that Al won't do any of those suggestions and he is a stubborn patient, only will do what the doctor orders.  I can't hear directly what Al feels about this stuff since he can hardly talk now.  Does he really feel like this or is my mom in some sort of funk herself and doesn't want him using these simple home remedies for whatever reason?!  I guess I am asking the caregivers out there, what can I do to help the caregiver??  I am trying to be so positive with them...this site has made me more positive and thats why I share it.  I just want the best for them and to make the process as easy as possible, as everyone does in this situation, and I don't understand why they won't take these suggestions and run with them in order to possibly add to a quicker recovery!!  Sorry for the long post!  Please help with whatever input you may have! Thank you all, Molly   http://www.cancercompass.com/message-board/message/all,25887,0.htm waves7 Thu, 10 Jul 2008 00:00:00 GMT Hello All,I have had a few symptoms of tongue and neck cancer for awhile.  My dentist took a look at my tongue and sent me to an ENT.  I have an appointment with the ENT on Monday, but over the phone I just told her of the symptoms I have had for awhile (sore throat and spots on tongue) not the symptoms I have noticed for awhile now that I might be psychological.   Just based on the most basic symptoms she told me I should have this test done.  That makes me scared.  Has anyone had this test done and can tell me what happened?  Does it cause pain?  Is it often offered if someone is not cancerous? http://www.cancercompass.com/message-board/message/all,25874,0.htm katekate Wed, 09 Jul 2008 00:00:00 GMT