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#57642 12-22-2005 04:16 PM
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Vin Offline OP
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My family member had dx of left later tongue cancer (T2N1M0) in January 2005 followed by surgery with clear margins in March and chemoradiation (35 tx and 4 ciplatin doses). Treatments ended in July 2005. Has had a g-tube since July and no eating by mouth.

Been seeing the ENT, radiation and chemo oncologist regularly. Last CT scan of head/neck and chest was in late November. ENT says it was normal. A videoscope exam of the back of the tongue and throat area was done within the last two months and no sign of cancer just lots of thick mucus.

But since tx ended, my family member does not seem to be improving but actually getting somewhat worse. Symptoms are lots of thick mucus which causes gagging and vomiting, loss of weight, lots of pain in the tongue, lately no energy to do anything and now daily cold sweats. According to the ENT there still lots of mucositis in the mouth and plus remaining scar tissues on the left side of the tongue. He does not seem concerned.

The mouth/tongue pain is still severe and to control it we are using a 100 microgram fentynal patch plus morphine. Plus using Robitiussin for the mucus.

We are getting worried. I would appreciate any comments or help wih regard to these symptoms and what else we could do.


CG to wife;
Jan 2005 DX SCC Tongue T2N1MO; RND surgery Mar 2005; 35 XRT and 4 cisplatin completed Jul 2005.
Dec 2006 tongue surgery, Scar tissue no cancer.
Feb 2010 neck node FNA - negative.
2010 ORN right jaw plus fracture
2015 ORN left jaw plus fracture
Feb 2016 Lower jaw reconstruction by Fibula free flap+titanium plate - Permanent G-tube
June 2016 Difficulty breathing - Permanent Trachea tube
Dec 2019 DX Cervical cancer - Stage 1 - Surgery Jan 16 2020.
15-20 esophagus/larynx dilations

#57643 12-22-2005 05:43 PM
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These questions come to mind. How many calories is he getting each day? Weight loss while it could be an indication of something more, can be as simple as not getting 2000+ calories a day. So look at the most basic reason for weight loss first. This lack of good nutrition may also make for a feeling of being lethargic as well. In my own case I had about one month of recovery for every week of radiation. I actually got worse for the first two months after treatment ended...radiation sickness. I was on morphine and other pseudo morphines for almost 10 months after treatment. These made me want to sleep all the time and I had 0 energy. He is still on strong pain relievers and this may be a contributing factor in how things are going. Lastly, I had severe withdrawls as my morphine began to be reduced, as I had been on heavy doses for over a year. That included alternating fever and chills and sweats to go with them. Until the tissues of my sinus area began to recover from the radiation damage, the mucous flowed.... tons of mucous makes me want to throw up. I do not know if his situation is paralleling mine or something else is a play. When in doubt you can always get a second opinion to catch any doctors that are missing clues to something serious. I hope that is not the case, and ask that you keep a calorie and nutrition DAILY LOG for a few weeks. Also to speak with your doctors individually about the points that I mentioned and his condition.


Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.
#57644 12-23-2005 02:55 AM
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I agree the first thing you should check is calorie intake as an explanation for lack of energy and weight loss. The painkillers I was taking and the thick mucous (which made me vomit too) kept me from getting the calories I needed every day for about 4 months after radiation--I wasn't losing a lot of weight at once but I was losing about 4-6 pds a month which was enough to sap my energy I think. In fact, it wasn't until I went off the perscription painkillers that I really could tolerate pouring enough stuff down my tube to stabilize my weight. I also gained a lot of energy back when I went off the painkillers (not that I'm suggesting your family memebr should do this if they are still having serious pain). I also had the cold sweats when I was going off of them for a while, so, like Brian, much of this sounds familiar to me.

But I also agree that of you are worried, perhaps getting a second opinion at this point would ease your mind. It really stinks how long it takes to recover from this and I know it can be discouraging even to read here of people who seem to recover fast if you are (or your loved one is) one of the ones who is recovering at a snails pace. It can feel like something must be wrong just because nothing's getting better--I have definitely had those same worries. Please keep us informed, Vin, about how your family member is doing.

Nelie


SCC(T2N0M0) part.glossectomy & neck dissect 2/9/05 & 2/25/05.33 IMRT(66 Gy),2 Cisplatin ended 06/03/05.Stage I breast cancer treated 2/05-11/05.Surgery to remove esophageal stricture 07/06, still having dilatations to keep esophagus open.Dysphagia. "When you're going through hell, keep going"
#57645 12-23-2005 03:51 AM
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Vin - Radiation is truly the gift that keeps on giving. My condition grew much worse after treatment. The combination of radiation sickness and pain killers kept my energy near 0 for months. Much like Brian, I had months of 'issues' to cope with. Those things that helped me to most were additional calories, more water, tiny bits of exercise (a stumbling lap around my house) and sleep. The pain drugs were truly double edged - relief but lethargy and confusion. Getting away from them was tough.

Get that second opinion if you have doubts. Even the docs who are close to this every day can miss things. Its a small expense for the peace of mind it can build. Be strong. Tom


SCC BOT, mets to neck, T4.
From 3/03: 10wks daily multi-drug chemo,
Then daily chemo with twice daily IMRT for 12 weeks - week on, week off. No surgery. New lung primary 12/07. Searching out tx options.
#57646 12-23-2005 04:12 AM
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Vin, don't forget to subtract calories in the daily log when vomiting occurs. The number of calories to subtract is hard to estimate but you have to figure it into the total.


Mark, 21 Year survivor, SCC right tonsil, 3 nodes positive, one with extra-capsular spread. I never asked what stage (would have scared me anyway) Right side tonsillectomy, radical neck dissection right side, maximum radiation to both sides, no chemo, no PEG, age 40 when diagnosed.
#57647 12-25-2005 12:43 PM
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Vin Offline OP
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Brian.

Thank you for your reply and sharing your experiences.

I am the primary caregiver and you are absolutely on the point regarding nutrition. Nutrition has been a real fight. Until about a month ago, calorie intake was less than 800 per day and not subtracting for the amount lost to vomiting as Mark has pointed out. Overall, there has been a reluctance to eating on the part of the patient.

The vomiting complicates the issues because in their perspective what's the point. Then after ending up in the hospital and being admonished by doctors about the very low daily calorie intake and having talked to dietician, we have brought up calorie intake to about 1500. The dietician says calorie intake should be 1800+ but we have not reached that level. I ill continue in the struggle to bring calorie intake to 1800+.

The mucus situation and other symptoms like lethargy very much parallel your. There is tons of mucus which induces vomiting and with it loss of precious calories. Also we are still using strong pain killers.

From your reply and the other kind replies I feel somewhat relieved. There are so many caring and wonderful people here that are so willing to help and share their experiences and I am very grateful. It seems that the road to recovery is very slow and painful.

I also appreciate your suggestion with regard to getting a second opinion. We are in the care of CCC currently but there others in the area where we could seek further help.


CG to wife;
Jan 2005 DX SCC Tongue T2N1MO; RND surgery Mar 2005; 35 XRT and 4 cisplatin completed Jul 2005.
Dec 2006 tongue surgery, Scar tissue no cancer.
Feb 2010 neck node FNA - negative.
2010 ORN right jaw plus fracture
2015 ORN left jaw plus fracture
Feb 2016 Lower jaw reconstruction by Fibula free flap+titanium plate - Permanent G-tube
June 2016 Difficulty breathing - Permanent Trachea tube
Dec 2019 DX Cervical cancer - Stage 1 - Surgery Jan 16 2020.
15-20 esophagus/larynx dilations

#57648 12-25-2005 12:57 PM
Joined: Oct 2005
Posts: 126
Vin Offline OP
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Nelie,

Thank you for replying. Since the end of the treatments weight loss has been gradual and about 4-6 pounds per month as in your case. Like I indicated in my reply to Brian nutrition has been a real struggle because of the vomiting and the reluctance to eating.

Still using morphine and the patch but have also tried other painkillers which have been stopped cold turkey because of side effects and possibly this could explain the cold sweats.

I agree with you on the fact that it "stinks" that the recovery takes sooo low and it has been discouraging because indeed my family member is recovering at a snail's pace.

As in my reply to Brian, we can certainly seek a second opinion as there are other CCC in area that we can go to.


CG to wife;
Jan 2005 DX SCC Tongue T2N1MO; RND surgery Mar 2005; 35 XRT and 4 cisplatin completed Jul 2005.
Dec 2006 tongue surgery, Scar tissue no cancer.
Feb 2010 neck node FNA - negative.
2010 ORN right jaw plus fracture
2015 ORN left jaw plus fracture
Feb 2016 Lower jaw reconstruction by Fibula free flap+titanium plate - Permanent G-tube
June 2016 Difficulty breathing - Permanent Trachea tube
Dec 2019 DX Cervical cancer - Stage 1 - Surgery Jan 16 2020.
15-20 esophagus/larynx dilations

#57649 12-25-2005 01:10 PM
Joined: Oct 2005
Posts: 126
Vin Offline OP
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Tom,

Indeed!!! Radiation is the gift that keeps on giving in so many unpleasant and down right nasty ways. But the fact that remains it saves lives and it is wonderful to be on the green side of the grass.

I find it reassuring that the combiation of pain killers and radiation sickness are contributing factors to the 0 energy level. I never expected recovery to be so difficult, painful and to take so long.

Exercise level is also about zero due to the 0 energy level although walking around the house on some days is doable.

I wish I had found this site from day one when our ordeal with cancer started. I would have been much more aware, informed and better prepared.

I am thankful for your reply and support


CG to wife;
Jan 2005 DX SCC Tongue T2N1MO; RND surgery Mar 2005; 35 XRT and 4 cisplatin completed Jul 2005.
Dec 2006 tongue surgery, Scar tissue no cancer.
Feb 2010 neck node FNA - negative.
2010 ORN right jaw plus fracture
2015 ORN left jaw plus fracture
Feb 2016 Lower jaw reconstruction by Fibula free flap+titanium plate - Permanent G-tube
June 2016 Difficulty breathing - Permanent Trachea tube
Dec 2019 DX Cervical cancer - Stage 1 - Surgery Jan 16 2020.
15-20 esophagus/larynx dilations

#57650 12-25-2005 01:25 PM
Joined: Oct 2005
Posts: 126
Vin Offline OP
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Mark,

Thank you for replying. I had no idea that we needed to subtract calories lost due to vomiting from the daily intake. As I indicated in my reply to Brian, nutrition has been a real struggle and fight.

Including the calories lost as a result of vomiting, calorie intake was probably 400 per day for a about 4 months following end of treatments.

After having read the other replies, it seems to make sense that the poor nutrition in conjunction with radiation sickness and the use of painkillers have contributed to the 0 energy level, the weight loss and the general feeling of not being well.

As a matter of fact, a few days ago on one of those really bad days, my family members said to me that this was no way of living. I keep saying "Hang in there" as things will get better.


CG to wife;
Jan 2005 DX SCC Tongue T2N1MO; RND surgery Mar 2005; 35 XRT and 4 cisplatin completed Jul 2005.
Dec 2006 tongue surgery, Scar tissue no cancer.
Feb 2010 neck node FNA - negative.
2010 ORN right jaw plus fracture
2015 ORN left jaw plus fracture
Feb 2016 Lower jaw reconstruction by Fibula free flap+titanium plate - Permanent G-tube
June 2016 Difficulty breathing - Permanent Trachea tube
Dec 2019 DX Cervical cancer - Stage 1 - Surgery Jan 16 2020.
15-20 esophagus/larynx dilations

#57651 12-27-2005 05:39 AM
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Posts: 72
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Vin,
I am my husband's caregiver and totally understand the frustration and fear after the treatments end, but the patient's health continues to decline. While I read everything I could get my hands on and knew the radiation would continue to 'work' after treatment, I certainly was not prepared. While Ken was going through treatment, we were 'attacking' the cancer. After the treatments, I felt completely frustrated because I could not 'do something' to help. Ken is three months out from his last tx and is just now starting to improve. There seemed to be two big hurdles we had to tackle - #1) Nutrition. All the vomiting caused by the very thick mucus and constant pain medications was tough to battle. Ken is on a J-Tube (like a PEG tube - but straight into his small intestines). Keeping him hydrated was critical. Ask your doctor about anti-nausea meds that could help ease the constant, nagging nausea. #2) The second and almost more critical problem for Ken (and me) has been severe depression. Radiation sickness is very rough - and it does add to depression.

Hang in there. This is a very long journey - but you aren't alone.


Carol R - caregiver to hubby Ken. Stage 4, SCC, BOT. 6/05 dx, 9/25/05 last tx, 5/06 stroke. Four years cancer free! Still taking things 1 day at a time.
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