Expectations After Radiation & Chemo End

My husband is nearing the end of his radiation & chemo treatments--3 more days of radiation & 1 more chemo.  He has lost all sense of taste.  This is his biggest issue!  He has done very well handling the radiation with very little problems with mouth sores and sore throat.  Also handled the chemo treatments very well with just a little nausea--so far. 

We both know that things will not turn around quickly.  We won't even know if the treatments worked until they do more scans in 6-8 weeks--something about waiting for the swelling to go down. 

We can't wait for him to realize he can taste something--anything, for the first time!  The doctor says it will be 2 to 3 weeks before the side effects from the last radiation treatment subside.  So, then what can we expect.  I have so many questions, I just don't know how to express myself.  It has been a nightmare since the end of August when he had his surgery and the cancer was discovered.  Previous to then, we were told it was a benign tumor, but it needed to be removed.   Surprise!

Thanks for any words of encouragement!

 

 

It sounds as though he has done very well thru treatments so far-great for him! The worst of the after effects, for me, lasted about 2 weeks. However, it took me about 10 weeks for any taste to return. Even now, 6 mos after end of treatments, I'd say I have 30-40% of my taste back. It may still continue to improve-or NOT. Noone can predict. He may have to learn a 'new' normal. Doesn't he have (lack of) saliva issues? I had my 1st post-treatment PET/CT about 6 wks later. Where was his primary tumor? Did he have metastesis anywhere? Best of luck to him and you, Gayle

Hi Gayle,
Thank you for responding! His tumor was in the parotid (salivary) gland--on the side of his face. They took as much of it as they could, during the surgery, without destroying the facial nerves. As far as we know, the cancer had not spread, though they did find one positive lymph node(that was removed) with "positive margins" in the gland. That scares me! All the lymph nodes they took from his neck were negative. This type of cancer, we were told, does not respond to chemo. It has to be wiped out with the radiation. My brother-in-law is a cancer surgeon in Missiouri and he encouraged us to go to Dana Farber for a 2nd opinion. They are the experts for this very rare cancer. Their suggestion was to do the chemo treatments, along with the radiation, as it is a very aggressive cancer (squamous cell in the salivary gland))and if it spread, the chemo would, hopefully, take care of it. So, we followed their direction.
Yes, his mouth is somewhat dry. Our dentist gave him some mouthwash, called Oasis, for dry mouth. He's also been using special toothpaste($15/tube!)to protect his teeth.
We expect the after effects for the next 3 weeks or so and then hope to notice some recovery things. He's lost about 20 pounds and wasn't very much overweight when he started.
Thanks for your input.
Jean

Don't have much to add about the expectations after radiation and chemotherapy but I will give you kudos for going to Dana Farber Cancer Institute in Boston. They definitely know what they're doing and have had enough experience with all forms of cancer to be well-informed and on the cutting edge. I was there for treatment and considered myself so lucky to have this facility only a half hour away from my home. Good luck.

My partner was also diagnosed with squamous cell carcinoma of the right tonsil with one positive neck node. He completed his 35th radiation treatment this past Tuesday (5 times a week for 7 weeks) and his 8th and last chemo (low dose cisplatin once a week for 8 weeks) yesterday. The original protocol called for 7 chemos but since his blood work was holding up the oncologist decided to add one more. On Tuesday when he finished radiation his neck looked horrible. It looked like dark brown leather. Our radiation oncologist recommended Eucerin which we immediately started applying and his neck has markedly improved. In fact the skin looks like new skin but his mouth and throat are very, very sore and it is very difficult to talk. We do not have a feeding tube or a port thank goodnes. In fact I was told that the latest recommendation is to try an not use a feeding tube bacause frequently patients rely on it and forget how to swallow. This will require rehab. Nausea has been a real problem. One very improtant thing to do regularly is to gargle and rinse the mouth with salt water and baking soda and then rinse with Biotene mouth wash. I have made certain the he gets at least 10 glasses of liquid each day and 1700- 2000 calories. He has not had any solid food for weeks and all nurishment comes from Ensure Plus (350 cal) Carnation Instant Breakfast (220 cal) and I also mix a full scoop of Whey protein powder into the Instant Breakfast which adds another 70 cal.

We have an appointment to see the oncologist and radiation oncologist in two weeks and the surgeon in 4 weeks. He did not have surgery because the squamout cell had extended from the tonsil to the base of the tongue and was inoperable. There was also one positive neck node which staged it 4a. The surgeon, a head and neck specialist at Sloan Kettering and others at Stony Brook University Hospital say it is curable. We are keeping our finger crossed but I must say this is very exhausting to the caregiver. I hope this has helped answer some of your questions and if you have any information that may help me I would most certainly appreciate hearing it.

Sincerely

After just posting my message I read yours and realize we are both feeling the same way. I have spent most of the day on the Internet trying to obtain more information but it seems so variable.

Variable - that's one of the hardest things about dealing with cancer, not knowing how things will turn out after treatment, or even how a person will cope with treatment. I'm a brain tumor patient, had my first craniotomy 14 years ago, and never expected the tumor to return. Six years later, thinking I was in the clear, it did. I had a second surgery and went into experimental high-dose chemo with a stem cell transplant (autologous bone marrow transplant). I had virtually no side effects until the very end, when I was expecting to feel ill for that entire year. The treatment was hugely successful, but now, 8 years later, it returned when I was completely asymptomatic - my Neurologist was as shocked as I was! My third craniotomy was last month, and I'm about to start radiation. I'm known for my high energy, so I'm choosing to be in a bit of denial about how the radiation might make me fatigued. Cancer is so much about not knowing - if/when it might return, or how a patient will handle the treatments. One thing I always tell people is not to ignore the psychological aspects - the "after" period can be much more stressful than being in the midst of it all. Pay special attention to your husband's moods and look into support groups or therapy. I'm a chef, so the idea of losing taste is truly terrible to me. In my case, I always fear losing "sense memory" - forgetting how a ripe peach tastes, for example - but thankfully, there is no danger of actually losing my sense of taste. As far as I know. Radiation is new to me, and therefore unknown. Best of luck with your husband's recovery - sure hope he gets his sense of taste back! Maybe it'll just take time?

RE: Brain cancer: I heard on the news tonight about a vaccine that is fairly new, for brain cancer. Don't know the name of it, but ask your doctor. It sounded very promising!

While my husband was having his last chemo today, he was talking to a nurse about keeping his weight from dropping anymore. She said (and he was told this before he started his treatments) to avoid the protein powders, etc, as they contain anti-oxidants which impede the ability of the raditiation to destroy cancer cells. It was suggested we wait a few weeks before starting that. So, you might want to hold off on the protein powders. Good Luck!

Do you know what they mean by protein powders> We are using Ensure Plus, Carnation Instant Breakfast and occasionally I put a scoop of Whey protein powder in the Instant Breakfast.

I hope this is OK.

Thanks.