Tonsil Cancer or Lymphoma or Both

ricky_b said:

10/35 rads and 1X chemo completed
All taste gone and sores have invaded the entire oral cavity with worst sores on palate and side of tongue. Chemo doc prescribed morphine solution to help with pain while rad doctors gave a viscous bitter solution which numbs the area for about 30 mins. Wondering how will I be able to survive through 25 more rad shots and 2 chemos when sores have already become a nightmare and eating food has become a tedious job. Everything tastes bitter and metallic. Haven't started morphine yet, does anyone know if that helps better ? Hoping to survive through without a PEG tube. I have heard that 1st chemo is the most painful in terms of nausea; is that true ? The lymph node on the right side feels quite tiny, should the rad doctor be consulted to re-calculate the rads exposure area for a possible decrease. That may cause less damage to salivary glands. I dread dry mouth in the long run. How long will it typically take after chemo/rads to get the sores healed ? Will the taste ever come back completely ? Is there no chance or treatment to alleviate dry mouth situation in the long run.

So many questions......and the answers can be
so individual. First of all, tho....they don't give metals for going without the PEG...IF it looks like the sores are going to hinder your liquid and nutrient intake, better to get it early and end up not using it, than to wait till you're in dire straights. I couldn't use the viscous Lidocaine or MM while I had mouth sores, it stung too much, so relied totally on my tube for nutrition and hydration.

Your chemo plan is just as mine was...Cisplatin during radiation...I didn't get 5FU and Cisiplatin till rads were over...I took my anit-nausea meds during the first three Cisplatin treatments on a set schedule provided by my Onc, and little trouble with being sick. I got Emend for the the first 3 days...along with Zophran, Compazine, and Ativan which I could use till there was no more nausea. That lasted up to 6 days after chemo. I didn't get mouth sores until the last 3 chemo treatments that contained 5FU...I swished with L-Glutamine mixed with water (which I could swallow and get extra hydration)...and stayed close to the soda/salt swish....neither of these stung...everything else did, even plain water.

You're not eating for pleasure any longer, so pushing past the "taste" and feed yourself like a plant...it's all for nutrition now. If it's too difficult, then DO THINK about a tube.

I had amifostine to protect my salavary glands...it seems many Dr.'s don't use it because it's hard on the patient...(it is an added misery, nasty stuff)...my Dr. did give me the option, and I did take it during rads. Maybe ask about it? I still have dry mouth, but it has gotten better (I'm two months out of treatment)...I plan on it getting a whole bunch more better along the recovery road.

The rad doc will be checking your lymph nodes along the way (mine did every week)...they shrink fast...at about 10 days before the end of radiation, they did a "boost" on me...and the rads got focused into the main tumor, leaving the range of radiation smaller...took less time...

p

ricky_b said:

3 chemo/35 IMRT sessions completed 10 days ago - Phlegm issue

I am concerned about the continuous phlegm formation in my mouth which doesn't seem to improve with days passing by. I have to literally gargle and clean the thick mucous with saline+soda water every 5-10 minutes and it will form back again. During the night I cannot sleep at a stretch for more than an hour and I wake up with intense coughing and gagging due to phlegm.

Yesterday night the coughing was bad and the phlegm from throat was red due to streaks of blood. I am quite distressed with this situation and just worried if I have to live with this phlegm for the rest of my life. I am not able to go anywhere because of a constant need to spit and gargle or else it will cause vomiting/gagging.

Can we expect this phlegm situation to stop in near future ? I am more pained by this situation than the actual sore pain or chemo induced nausea.

Yes, No...Doubtful
Yes - what you are going through, especially 10 days out is quite normal... It's a place that most all of us that had radiation have been.

No - you won't have to live with it forever. But more than likely you are going to live with it for awhile, several weeks at minimum more than likely.

Many of us have used various rinses and swishes.... Mine was hydrogen peroxide and a little water with baking soda. Many use soda water, or ginger ale...

Communicate with your medical team on any pain issues...

Doubtful - and more than likely as you are technically still cooking as we call it for a few more weeks. You aren't going to have any significant improvement.

But in a month or so you should start improving, slowly..measured in weeks and months, not days and weeks.

You'll get there...

Slowly your saliva will return to some degree, more than likely, near completely, same with any taste issues.

I'm going on four years now.

It took nearly two years to get a 100% of the taste back, and 95% saliva..

But I had made significant improvements within the first 4 - 6 months.

Best,
John

Tmers418 said:

!!
I am in a similar situation but have not got so far with the doctors and I'm just about to pull my hair out.
I found out recently that I am positive to Epstein Barr virus from a previous case of glandular fever. During this time my platelets continued to drop over a period of 4 weeks before increasing to a borderline reasonable level again, I understand they this can be normal as the cells do have times of regeneration, however since then I first felt one lump on the right side of my neck - tonsil region that had slowly been growing over the last 3 months. It is now very enlarged and can be uncomfortable. However I am not sick. When I first brought this up to my GP she said wait another month and if it's still there I will do a biopsy. I went back it has enlarged and she is now saying it is normal and will go away in time. I also have another two enlarged lymph nodes at either side of my neck that are also growing and again I am not sick. But I am very tired all the time. The doctor keeps telling me she isn't overly worried and that it will go away in time.

I am 21 and I am feeling very powerless as I think that there is more too it but I am not getting the support...can anyone shine some light on what this might be??? This is all very new to me

Options..

Welcome...

Just a suggestion here...., you do always have the option to either see another GP for a second opinion, or even better an ENT.

You are in charge of your health, you know your body better than anyone.

JG