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Tonsil Cancer or Lymphoma or Both

ricky_b
Posts: 10
Joined: Aug 2012

(1) Noticed both tonsils slightly inflammed with one on the right bigger than the one on the left like 2 years ago in 2010.

(2) Went to see the physician in Feb 2011 and he said its nothing and everything looked normal to him. One tonsil can be bigger than the other and it can just be an ongoing allergy. He prescribed me some allergic medications and after 2 weeks when I went to see him again, the tonsil had retracted to normal state.

(3) Went to another physician at around March 2012 and he said there is nothing wrong he could see and everything is normal. He felt the nodes on the underside of my neck and did not find anything. Suggested me to go for a Barium - swallowing test which I did not take.
Went directly to an ENT in around May 2012. Very first thing he said is that there seems to be nothing wrong. He asked me to direct him to the region of the mouth where I suspect something is wrong. He felt my right tonsil and felt hardening of tissue. Suggested me to get CT scan. He also felt my lymph nodes on neck and did not find anything unusual. Gave me antibiotic for 2 weeks - Augmentin- twice a day (I got CT but did not start antibiotic).
CT scan showed enlarged lymph nodes around 1.6 cm on both the sides, although the right side which is the affected one showed some smaller surrounding lymph nodes too which were slightly enlarged. About 1 month passed by after this scan and nothing serious was pointed out by anyone.

(4) Doc. calls back in and suggests a lymph node needle biopsy on the right side.
Went to get biopsy and radiologist felt the lymph node on the affected right side and could feel the node. Due to something missing in their testing portal the biopsy could not be done during that day. Radiologist however pointed out that the node has not grown any bigger since the CT was taken around 1.5 months ago. May not be carcinogenic.
Started taking Augmentin twice/day for 2 weeks and after the course tonsil on right side appears to be enlarged and more red.

(5) Went to the same primary physician again and asked him to refer to another ENT. He checked tonsil again. He still said that he thinks nothing is wrong but just the tonsil area on the right side seems to be red and inflamed. I was referred to another ENT.

(6) ENT sugested right tonsillectomy followed by biopsy of the tonsil. He explained, something is definitely wrong with the tonsil and should be taken out. It can or cannot be malign but that could be figured out after tissue biospy of the tonsil and then the case could be followed up.

(7) Did not get surgery done but went to another ENT surgeon/professor. His resident doctor checked everything and did a physical exam under my armpits but did not find anything. He also said that 1.6 cm of lymph node in that area of the neck can be acceptable.

(8) Senior Dr./professor came and had a look and he suggested me to take aspirator or fine needle lymph node biopsy right then. 2 of his MD docs came and performed the needle biopsy on my lymph node. Both doctors looked the sample under the microscope and declared that it is SCC of tonsil and pointed towards HPV infection.

(9) Detailed report came in later and no HPV was found, however, SCC of tonsil was confirmed. PET scan was done.. Doc calls in the evening and says he doesn't understand the scan very well as several spots lighted up in the entire lymphatic system including tonsils, nodes on neck, armpits, spleen, 3 nodes below liver, groin etc. He says, he is not sure if it is SCC of tonsils (eventhough their tests says so).

(10) He now thinks it can be lymphoma or may be both SCC and lymphoma OR it can be some other infection going on in the system. He called me in for yet another physical exam of my armpits and groin area. I did so and he could not feel any enlarged node in my armpits or groin area. He suggests taking out a lymph node with help of an ultrasound or CAT scan since no node can be felt and then send it for biopsy.

(11) I stand extremely confused now as their own diagnostic tests are contradictory. Firstly I do not exhibit any signs of any serious illness. No fever, weakness, fatigue, weight loss, pain etc. etc. It was only me who pushed for ENT docs to have a look and they are not yet able to reach to a conclusion. I was diagnosed for HPV which came negative after the test. The tests confirmed it is SCC of tonsil but the doctor now says he doesnt think it is SCC and it can be lymphoma instead.

(12) The biopsy of my cervical lymph node and tissue biopsy of my tonsil came out negative for lymphoma but shows SCC with P16 HPV. The aspiration biopsy on lymph node was negative for P16. I have never indulged into random sexual behavior so a possibility of HPV just seems to be impossible. In fact I have been studying all my life and have been in a monogamous relationship with wife only. She is negative for all HPV strains as well. Until the day of biopsy the doctors were absolutely certain that it will come out negative for SCC and it is lymphoma. I was told that just a pea sized tissue will be extracted from inflamed tonsil but they ended up taking out quite a big chunk (1.2 X 0.9 X 0.8 cm). On asking why did they do it, doc said a larger section is required for lymphoma prognosis.

(13) Anyway, the entire tonsil has not yet been removed. I was sent to a surgeon who examined my armpit and groin area where the lymph nodes lit up but he said he could not feel anything and everything seems to be normal. He sent us back and told us that he will talk to the ENT surgeon. They might have discussed and now ENT wants the surgeon to perform a CAT scan on right armpit and surgically remove a lymph node buried deep inside. This lymph node will now be biopsied. He wants to find out if this node shows SCC or lymphoma or is just benign.

(14) I am not agreeing to this plan because I feel it is unnecessary. When the most inflamed part of the lymphatic system - the right tonsil and associated lymph node was negative for lymphoma, is their a need to do such an invasive test, specially when the nodes are not swollen and cant be felt during physical examination ? Even if I believe I have SCC of tonsil and lymph node, does the SCC spread in this fashion that it will be present in the entire lymphatic system without any adverse symptoms in me?

(15) Why is the cervical lymph node not growing in size and in fact has become smaller ? This doesn't seem to be like a typical case of tonsil cancer and neither lymphoma. Is it a possibility that it is just some viral infection that has affected the entire lymphatic system and body is fighting against it? No blood tests have been done so far and the docs think they won't get any information from them. The tonsil basically got inflamed after taking antibiotics (Augmentin) for 2 weeks. Before that the 1st ENT I went to could not even see anything visually until I asked him to feel the tissue on the right tonsil.

(16) As far as I understand, viral infections in tonsil respond to antibiotics and the cancer cells wont. Why did the tonsil respond to antibiotics if it was all SCC. Can the PET-SCAN be a false positive, and should we repeat the scan before going into the body fishing for the lymph nodes ?

(17) Is it SCC everywhere in the lymphatic system, or lymphoma below the head but SCC in the tonsil and neck or its just another infection which mimics cancer ?

CivilMatt's picture
CivilMatt
Posts: 2825
Joined: May 2012

Hi ricky_b,

Where are you, The Twilight Zone? My head is spinning just reading through your ordeal. I don’t understand the problem of diagnosis if they are using a microscope on the samples. Isn’t a cancer cell obvious? Well, I don’t know and I hope something productive comes from all your visits.

By the way, I never felt sick or ran a fever; I felt a lump on my neck while shaving. Ta da, cancer. To this day I never felt anything. Also, I have not been promiscuous, but I was HPV+, go figure (and my wife is hpv-).

Best,

Matt

osmotar's picture
osmotar
Posts: 951
Joined: Jul 2011

Matt,

I went to my ENT only for the small lump I found right under my jaw line on the right side; like you never felt sick, when ENT scoped mt throat and asked if I realized right tonsil was enlarged ..answered no, he asked if it hurt when swallowing answer again no, he asked about cough and change in voice same answer....so if it wasn't for finding the lump who knows how long this would have gone one...Hpv was never brought up. I have to agree I was also confused reading ricky_b's post.

Linda

ToBeGolden's picture
ToBeGolden
Posts: 697
Joined: Aug 2010

What a history! Only one small thing I can contribute. PET Scans can have false positives. A PET uses radioactive glucose to find the cells which are hungriest. In most cases, cancer cells are hungrier than normal cells. But there can be other reasons for a cell to be abnormally hungry: like an infection or arthritis. If fact, a PET Scan does not tell us much about the brain because the brain is so active and hungry that a brain tumor does not make much difference. I asked my oncologist this directly, whether the PET will scan the brain. He said yes, but the results are unlikely to show much because the brain is so active. Rick.

longtermsurvivor's picture
longtermsurvivor
Posts: 1758
Joined: Mar 2010

but dont overthink the situation. Histopathology differentiates scc from lymphoma quite easily, so you can believe them when the bx shows scc. SCC tends NOT to spread diffusely throughout lymphatics. It commonly spreads by local and regional direct spread, and by stepwise progression within lymphatics, and can metastesize to other organs, but as isolated spots.

Inthe case of SCC, HPV is not necessarily an STD, sodont spend another second worrying aboutthat.

You need additional tissue diagnosis. Your other PET scan findings need explained, and what hasbeen proposed isthe best and fastest way to obtain that. Respectfully, you need to now be a good patient and not hamstring the physicians you have chosen. It srves no purpose to not follow their advice in this. Your pointsraised in 14 and16 are potentially harmful to you. and frankly, as a lay person you are dangerous toyourself whenyoustartpicking and choosing your healthcarethis way.

With respect to 16, for instance, there is an expression that is that the two facts )1 that you took antibiotics and 2) that the tonsil shrank may both be true, but these may be completely unrelated. If unrelated, the conclusions you just derived are invalid.

Your case isnt straightforward, but still can be viewed quite simply. First, you have scc of th tonsil. Second, you have unexplained PET findings that require additional testing. Only a tissue sample obtained from one of these sites will put the issue to rest.

Best to you,

Pat

Skiffin16's picture
Skiffin16
Posts: 8057
Joined: Sep 2009

My History is STGIII SCC HPV+ Tonsils (primary), and a lymphnode on the same side as a secondary.

Started off as a very slight irritation and actually over a few months, never got any worse...just not any better either.

This was from October 2008 - January 2009...

Mild antibiotics at first, did nothing..., Levaquin next...did nothing. Scheduled with ENt for January 2, 2009... during the Holidays the lymhnode popped up.

Janaury 2, the ENT scoped me, sent me for a CT and had me come right back. He told me he was 95% sure I had SCC Throat Cancer, ad since I wasn't a tobacco user or no family history, more than likely it was HPV+ derived.

January 5th, he took the tonsils out and did a quick biopsy...confirmed, STGIII SCC Tonsils. He sent the tissue of and a few weeks later it came back HPV+.

Bottom line, I don't think there is a "classic" case of tonsil cancer...

As for you not agreeing to the #14, biopsy is the best and only way of confirming cancer that I'm aware....so why wouldn't you agree to it?

As for the CT/PET, they are tools...and yes, they can light up from cancer, but also other things like infection, residual damage from treatment or injury, etc....

To me, the most deifintive way to determine cancer is through biopsy of suspect areas.

Best,
John

ricky_b
Posts: 10
Joined: Aug 2012

Thanks all for your time in responding to my story. It helps a lot to interact with people going or have gone through this phase. I went to see another ENT and he pointed out a very interesting thing. I was administered TB vaccine as a kid in my country which is known to show false positive for TB infection in X-Ray of lungs and PET scans. In my grad school, I was in fact advised by my docs in 2006 not to take TB related tests in future as they will show up as false positives.

Tonsil Dad's picture
Tonsil Dad
Posts: 488
Joined: Dec 2011

I agree with all the comments made here. I don't know much about
the ins & outs of all the tests, terms and things related to our
cancers, maybe I'm a little naive thats why I come to this board
for answers. As for my tonsil cancer I had a 3.7 x 1.8 x 3.0 mass
on the left tonsil only, no other lump or lymph involvment anywhere.
Did a biopsy which confirmed scc stage II, I had 33rads only and God
willing that did the trick.
Anyway Ricky I pray for the best outcome which ever path you choose.

God bless
Tonsil dad,

Dan.

po18guy
Posts: 237
Joined: Nov 2011

Pardon me if it has been mentioned, but Fine Needle Aspirations are almost worthless for a primary diagnosis. They produce too many inconclusive or false negatives, as they simply don't provide enough materiel. They are done because they are cheap. They are fine if a relapse of a known cancer is suspected, as the pathologist already knows what they are looking for.

Second opinion! One saved my life after both a primary physician and an oncologist (after excisional node and bone marrow biopsies) decided that I had a virus. Didn't. I had an aggressive unknown sub-type of a rate T-Cell lymphoma. Get another set of eyes on your case.

katenorwood
Posts: 1808
Joined: May 2012

Ricky,
Hey, what you have been through already is a mind spin. People get upset with my mind set but cancer is cancer. If you have it, get it out ! But saying this I believe we as cancer patients have the god given right to have all the information we ask for. And sadly in most cases we don't know what to ask, or how. You need to find a team you trust, and also in most cases even me acceptance we have this disease. I hope this can be resolved quickly....as waiting too long is not a good thing ! Keep us posted Ricky, we are all pulling for you ! Katie

Tim6003's picture
Tim6003
Posts: 1490
Joined: Nov 2011

Wow..complicated no doubt. But here is my 2 cents (and I am no doctor)

1. Irregardless of all the pionts you shared, there is no better approach (my opinion) when cancer is suspected than agrresive.

2. The human body is wonderfully complicated and so many things can be related, yet unrelated and as you will hear on this site so many times "everybody's body responds differently".

3. You, as I, are no doctor, they are not perfect and if it appears to be as difficult as it is for them, then you need to now step back and let them do what they need to do....and if you do end up with any type of cancer, you will grow to appreciate the more aggresive doctors you come across during your treatments, not the opposite.

I pray the best outcome and that all are wrong and you have no cancer!! :)

Best,

Tim

ricky_b
Posts: 10
Joined: Aug 2012

FNA biopsy was done on the inguinal lymph node which had PET signal of around 10 units that is around 4 units more than the cancerous cervical node on the right side of the neck. The findings are new and the entire team of doctors were shocked. I was diagnosed with asymptomatic Sarcoidosis and that was the reason for positive PET scan of all the nodes of the lymphatic system and the Spleen. Inguinal lymph node was chosen as the site was remote from the head and neck area. Doctors are not worried about the Sarcoid as it is asymptomatic and need no attention at this point. So, good news - there is no cancer in rest of the body and PET was false positive due to Sarcoid. My case was also presented to the Tumor board of the hospital by the doctor. SCC is therefore localized to right tonsil and lymph node on the same side.

FNA biopsy was repeated on the left lymph node of the neck to determine if that is also cancerous like the right side or it is Sarcoid. Unfortunately biopsy came out inconclusive. No Sarcoid, Lymphoma and SCC. The radiation doctor doesn't want to leave it unradiated and wants to treat it as a cancer node also. The treatment plan given to me is 35 rads - Tomotherapy on right tonsil tumor and lymph node and left side lymph node with 3 rounds of Chemo-Cisplatin along with the rads. The other option would have been surgical excision of the left lymph node and then deciding whether or not the left side to be radiated. The radiation doc still considers both nodes to be radiated for the safest bet. Surgery of the tonsil and affected lymph node has been ruled out due to my unique anatomy of an artery too close to the tonsil and also due to the morbidity of the procedure. Rads an Chemo will still be needed and therefore docs finalized on the aforementioned plan which has to be started from Oct 15th. Doc assured that the radiation on the left node (supposedly benign) will be less intense than right side. I am extremely worried about excruciating throat pain and dry mouth situation which people have to go through. Also I have denied to put a PEG tube in the stomach as I'm determined to try hard to swallow food naturally. Any comments regarding coping mechanisms with side affects will be very helpful.

phrannie51's picture
phrannie51
Posts: 3619
Joined: Mar 2012

you've been dealing with all this for 5 or 6 weeks, without knowing anything for sure...that would have made me crazy with anxiety.

I just finished treatment on Aug. 28th (tho I finished radiation back in June)...I had 6 Cisplatin treatments, with the last three also having 5FU in a fanny pack.

I went ahead and got the tube before I started treatment, because I weighed under 100 lbs to start, and I didn't want to go thru all this and end up starving to death. Turned out, I didn't need my tube until the last 3 chemo treatments....and that was because 5FU turned my mouth into hamberger.

Coping is a matter of being positive....knowing that you are not only fighting for your life, but that you are going to win that fight. During radiation, you get into a whole new schedule...every day is the same...same time, same station...what I did was ask God to get me thru each day on a daily basis. That and I drank a ton of water, ate food till about the 3rd week, then switched to Boost and Ensure. Nothing had any taste, so I couldn't get interested in eating....getting a set amount of calories down was way easier with the prepared drinks.

Part of coping, also was allowing others to help me. That wasn't easy, as I'm pretty independent, and used to doing for myself. But I needed the help of family and friends by the time I was in radiation...I needed rides to rads, since I also went to chemo everyday for amifostine (a nasty drug that makes you sick on a daily basis, but protects the saliva glands)....I needed my husband to take over all horse care, dog care, house care, cooking...really....I just wanted to sleep (another coping mechanism that you will want to use.)

Another biggie for me was milk...whole milk goes down without any sting, hydrates you and feeds you...helps get food down....it was my manna...and I drank a gallon every two days.

This is what Kent Cass tell us.....BELIEVE!!!You are going to get thru this, so get used to the idea :)....

p

blackswampboy's picture
blackswampboy
Posts: 341
Joined: Jul 2012

your determination to get answers is admirable. should serve you well in coping with treatment!

I had rads and chemo (erbitux) for HPV+ Tonsil SCC. the pain was not excruciating for me, not anywhere near that. only time I had prescription pain meds was following insertion of the chemo port and PEG tube.
don't get me wrong, rads are a real drag--but pain was the least of it. tylenol got me through it. also ativan for vomiting, silver sulfadiazine for the burn on the outside of my throat, and magic mouthwash for mouth irritation.

and I just said this in another thread, but I'm glad I got the PEG--even though I never had trouble swallowing. eating is difficult when you can't taste anything, your mouth is dry, and food irritates. I also lost a lot of weight, and with tube feeding I could always get my calories.

best wishes, you'll pull through this.

longtermsurvivor's picture
longtermsurvivor
Posts: 1758
Joined: Mar 2010

you are one rare dude. Sarcoidosis is a rare disease to begin with. My mother had sarcoidosis 25 years ago. It presented with double vision as a tumor grew behind one of her eyes. She also had nodes in the hilum of her lung. Took steroids for a few months anf it all went away. This finding puts you back in the game! Carry on.

Pat

Skiffin16's picture
Skiffin16
Posts: 8057
Joined: Sep 2009

Continued from my post above...

STGIII Right Tonsil and lymphnode, same side.

In my case, I did have the tonsils out, no other surgery, rads to both sides (less on the left)...Cisplatin, Taxotere, 5FU, then seven weekly doses of Carboplatin and 35 daily rads.

I also had no PEG...minimal pain as BSB stated above, no serious neck burns, never sick as for vomiting.

I did lose taste and saliva, but most all returned eventually.

There are a few that did continue to eat solid food. Around week three of rads, I swapped to Ensure and sliced peaches, that with liquid meds.

As for the PEG or anything else the MD's prescribe...do as the recommend.

You sound determined to do it your way and on your terms.... That only works for very few...eventually most will do what ever they have to do to get through treatment, and move on.

Best,
John

ricky_b
Posts: 10
Joined: Aug 2012

Received 1st cisplatin chemo and tomotherapy today.. since the biopsy on left side was inconclusive docs decided to radiate cervical node on left side as a malignant one too.. no silver based ointment for skin rash is prescribed but instead calnedula ointment is to be used everytime after radiation and during the night.. 1 question keeps hassling me.. should they have surgically removed the right tonsil and lymph node and then proceed with this treatment? Also they are giving me ONLY cisplatin during chemo and no 5FU or any other combi.. looks like a different approach than standard treatments.

longtermsurvivor's picture
longtermsurvivor
Posts: 1758
Joined: Mar 2010

this is one of the several permutations of "standard.". Dont sweat the little details. Carry on. Are they treating your sarcoidosis at the same time?

ricky_b
Posts: 10
Joined: Aug 2012

They are not/ worried about Asymptomatic sarcoid at this time.. they think that is much less of an issue and can be solved later by steroid medicines.. in the sheet of what foods and veggies to avoid there is typically every form of anti oxidant source. The reason given is that the anti oxidants may save even cancer cells from dying and may render the treatment less effective.. this was something new..

longtermsurvivor's picture
longtermsurvivor
Posts: 1758
Joined: Mar 2010

the one thing I wonder about is that your positive nodes from sarcoid will continue to light up on PET scan, thereby rendering this a less effective follow up tool for your cancer. Certainly the sarcoid can be treated at any time. The treatment is steroids. Just wondering....

ricky_b
Posts: 10
Joined: Aug 2012

They are not/ worried about Asymptomatic sarcoid at this time.. they think that is much less of an issue and can be solved later by steroid medicines.. in the sheet of what foods and veggies to avoid there is typically every form of anti oxidant source. The reason given is that the anti oxidants may save even cancer cells from dying and may render the treatment less effective.. this was something new..

ricky_b
Posts: 10
Joined: Aug 2012

Sarcoid treatment

Skiffin16's picture
Skiffin16
Posts: 8057
Joined: Sep 2009

I think the majority of places use similar Tx plans, but more what they have the best results with at the time.

For me, they did take the tonsils out, but not the tumor. They opted to see what effects the chemo and rads would have as the tumor was close to the carotoid.

In my case it was a good call...tumor melted away, no signs since.

I did have a combination of four tyoes of chemo over sixteen weeks...seven of those was concurrent weekly with rads.

But several here have all kinds of variations to what I had..., or me to them I guess depends on how you look at it.

Best,
John

CivilMatt's picture
CivilMatt
Posts: 2825
Joined: May 2012

ricky_b,

Well, we got that figured out, finally. I mentioned you being in the twilight zone on my first post, it now looks like nothing too unusual, good for you.

Going PEGless, some do, I did not but I always managed to drink at least one meal a day. Pain was never a big issue for me, but sore throat (not your typical normal person sore throat) and sore mouth were a challenge. I burned through a six pack of Magic Mouth Wash for the throat and mouth. I loved the stuff. Funny thing, today I can barely stand the Magic Mouth Wash, tastes icky.

For radiation I had to drop one tablet of Lorazapam for the anxiety (never liked the mask).

For neck burns (worst pain of treatments) weeks 6, 7, & 8 Silver Sulfadiazine Cream, great stuff, takes all the pain away. It is messy.

See I had it good, drugs for my mouth and throat, drugs for my brain and medication for my burns.

I started drinking gallons of water back in February and I am still drinking gallons today. My swallowing worked well at all times. My throat got pretty narrow for a few weeks, but I still worked at swallowing.

Who knows, you might do real well and suffer very few of the possible side effects.

I feel pretty lucky.

Best,

Matt

ricky_b
Posts: 10
Joined: Aug 2012

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.

phrannie51's picture
phrannie51
Posts: 3619
Joined: Mar 2012

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

Pam M's picture
Pam M
Posts: 2194
Joined: Nov 2009

Sorry - just now seeing this post. Hoping your pain meds have helped.
Mouth sores made talking/eating a nightmare for me for a while, too. The meds I got in the hospital didn't eliminate the mouth sore pain (which was more intense than my throat pain at that point).
If we did a tally, I think that the majority of people here were NOT put on a combo of Cisplatin, 5FU and a third chemo (mine was Taxotere). I'm wondering if the ones who got all three at once were diagnosed a little earlier than the others (in general).
Hope you're doing as well as can be expected, and that you're managing to get in enough calories.

ricky_b
Posts: 10
Joined: Aug 2012

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.

Billie67's picture
Billie67
Posts: 834
Joined: Jul 2012

I'm so sorry you are going thru this. I very vividly remember dealing with the same thing about 4 1/2 5 months ago when I finished rads. I think it lasted a little over a month at that really coughing, gagging and vomiting stage. It started to slowly get better at about the month or 5-6 weeks mark. I too found that soda, coke for me helped better than anything. Warm tea was a close second. I also discovered that at might when I went to bed at night and took my dilaudid for pain I could sleep almost all night because it actually dried up the junk for quite a while. If it didn't make me so loopy I would have taken it during the day too. It also stopped the urge to cough, opiates will do that. If you don't have any liquid dilaudid ask your dr for some. I too remember this being the worst most annoying time as well. It will pass I promise, most likely not all at once but it will eventually go away. I also used mucinex and has a tiny bit of relief but more with the dilaudid. I was tempted to try sudafed as it will dry you up too.
By the way, this is a really old post. You should post this as a new topic and I'm sure many others will join in and tell you what worked for them.
Many have used a suction machine too. I didn't use one but I know it helped many people. Good luck
Billie

Skiffin16's picture
Skiffin16
Posts: 8057
Joined: Sep 2009

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
Posts: 1
Joined: Mar 2013

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

Skiffin16's picture
Skiffin16
Posts: 8057
Joined: Sep 2009

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

peggylulu's picture
peggylulu
Posts: 367
Joined: Dec 2012

I agree with Skiffin 16 . What would a second opinion hurt ? Maybe an ENT ?

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