Recurrence of Base of tongue Cancer
Comments
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words by Matt
Mehrdad,
You are a touchy one. I mean no harm, I come in peace.
Many H&N members have had a reoccurrence of their cancer and they have radiation and chemo again (their words). Many members do not continue to participate in this online smorgasbord of opinions. And your question(s) and the necessary format for response maybe one of the reason H&N members retire from this forum. The other is they have passed away.
I have reviewed my responses to your posts over the past (it will be 2 years in September) and you have had an interesting treatment. Not that anything you said previously seemed overly detrimental. Did you pass on some of the Erbitux treatment? You also had difficulty taking your meds which help you to get through the treatments. Did you continue to smoke cigarettes during treatments? And as I remembered, you were trying to build up your immune system to help fight the cancer.
If you do have a reoccurrence and you need to have additional treatments I will say as I did before. Get all the nutrition and hydration you can, take all your meds, don’t dig in your heals and refuse to do your part in treatment. It is hard and, it was hard for each of us (in our own way).
I am not trying to pick on you. I want you to give it your all and persevere against any reoccurrence.
Matt
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I’ve had more than one recurrence....
I had NPC....as did Hondo. Original treatment was started April 2012....35 rads, 3 Cisplatin....then adjuvant chemo of 3 more Cisplatin with a 5FU chaser. Three years later....August 2015, they found it in a lymph node.....I had a neck dissection and 25 more rads. Then in April of 2017, they found it again in my neck, but this time it was inoperable.....also a lymph node in my chest was biopsied and determined to be a met. I started Keytruda June of 2017....and am still on it. Between the time they said inoperable and April, 2018....I scoured the internet and found a clinical trial for surgery at Dana Farber....cyroablation of the tumor in my neck. That tumor is now history.
I feel great....do what 68 year old women do in Montana....ride my horses, play with my dogs....take care of my husband.....and enjoy the crap out of what I have.
P
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Not Needed
To those who don't believe in a god should not be offended by those that do. Your post almost sounds angry about it. Is society getting too hypersensitive to the beliefs others have or is it just being politically correct in your opinion.
We here do everything we can to help others get through a very tough time in their lives and if prayer is what they want then they'll get it from those who believe. For those that don't, ignore it and think positive thoughts instead.
Live and let live. We all have our coping mechanisims. It might be time to talk to a therapist about your anger issues. That is not good for healing.
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Thanks for sharing. I amire your couragephrannie51 said:I’ve had more than one recurrence....
I had NPC....as did Hondo. Original treatment was started April 2012....35 rads, 3 Cisplatin....then adjuvant chemo of 3 more Cisplatin with a 5FU chaser. Three years later....August 2015, they found it in a lymph node.....I had a neck dissection and 25 more rads. Then in April of 2017, they found it again in my neck, but this time it was inoperable.....also a lymph node in my chest was biopsied and determined to be a met. I started Keytruda June of 2017....and am still on it. Between the time they said inoperable and April, 2018....I scoured the internet and found a clinical trial for surgery at Dana Farber....cyroablation of the tumor in my neck. That tumor is now history.
I feel great....do what 68 year old women do in Montana....ride my horses, play with my dogs....take care of my husband.....and enjoy the crap out of what I have.
P
Hello phrannie51,
I should say that you are really a legend in courage and mental strength for me. Your post
You really brigthened my dimmed world, and thought I maybe near the END.
I have a few questions for you:
1) What was the stage of your original NPC?
2) What is the meaning of "met"?
3) What is 5FU chaser?
4) Did it go to both of your lymph nodes in the neck?
Again thanks for making my day. and I will always think of you as a role model.
Mehrdad
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I just posted the whole story a minute ago....mehrdad357 said:Thanks for sharing. I amire your courage
Hello phrannie51,
I should say that you are really a legend in courage and mental strength for me. Your post
You really brigthened my dimmed world, and thought I maybe near the END.
I have a few questions for you:
1) What was the stage of your original NPC?
2) What is the meaning of "met"?
3) What is 5FU chaser?
4) Did it go to both of your lymph nodes in the neck?
Again thanks for making my day. and I will always think of you as a role model.
Mehrdad
My original cancer was stage IV.
A met is a mestastsis....where the cancer moves to another part of the body....like lungs.
5FU is a type of kick butt chemo. After the Cisplatin infusion, I wore a fanny pack that infused 5FU for 4 days....24/7.
It was in several lymph nodes in my neck....the second recurrence out of 64 nodes three were cancerous.
p
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Base of tongue CA
I just found this site, and I will be following you are thread. My husband was just diagnosed with HPV-related base of tongue squamous cell carcinoma. I’m trying to learn everything I can about this road. Thanks again for bringing up this subject.
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Thanks!phrannie51 said:I’ve had more than one recurrence....
I had NPC....as did Hondo. Original treatment was started April 2012....35 rads, 3 Cisplatin....then adjuvant chemo of 3 more Cisplatin with a 5FU chaser. Three years later....August 2015, they found it in a lymph node.....I had a neck dissection and 25 more rads. Then in April of 2017, they found it again in my neck, but this time it was inoperable.....also a lymph node in my chest was biopsied and determined to be a met. I started Keytruda June of 2017....and am still on it. Between the time they said inoperable and April, 2018....I scoured the internet and found a clinical trial for surgery at Dana Farber....cyroablation of the tumor in my neck. That tumor is now history.
I feel great....do what 68 year old women do in Montana....ride my horses, play with my dogs....take care of my husband.....and enjoy the crap out of what I have.
P
I feel more hopeful reading your story. Thank you so much.
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NPCphrannie51 said:I’ve had more than one recurrence....
I had NPC....as did Hondo. Original treatment was started April 2012....35 rads, 3 Cisplatin....then adjuvant chemo of 3 more Cisplatin with a 5FU chaser. Three years later....August 2015, they found it in a lymph node.....I had a neck dissection and 25 more rads. Then in April of 2017, they found it again in my neck, but this time it was inoperable.....also a lymph node in my chest was biopsied and determined to be a met. I started Keytruda June of 2017....and am still on it. Between the time they said inoperable and April, 2018....I scoured the internet and found a clinical trial for surgery at Dana Farber....cyroablation of the tumor in my neck. That tumor is now history.
I feel great....do what 68 year old women do in Montana....ride my horses, play with my dogs....take care of my husband.....and enjoy the crap out of what I have.
P
What is NPC? And, thank you.
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Some more questions:phrannie51 said:I’ve had more than one recurrence....
I had NPC....as did Hondo. Original treatment was started April 2012....35 rads, 3 Cisplatin....then adjuvant chemo of 3 more Cisplatin with a 5FU chaser. Three years later....August 2015, they found it in a lymph node.....I had a neck dissection and 25 more rads. Then in April of 2017, they found it again in my neck, but this time it was inoperable.....also a lymph node in my chest was biopsied and determined to be a met. I started Keytruda June of 2017....and am still on it. Between the time they said inoperable and April, 2018....I scoured the internet and found a clinical trial for surgery at Dana Farber....cyroablation of the tumor in my neck. That tumor is now history.
I feel great....do what 68 year old women do in Montana....ride my horses, play with my dogs....take care of my husband.....and enjoy the crap out of what I have.
P
Hello Phrannie51,
I have few more questions that I hope will not bother you. If any of them do, please just don't
answer it or indicate so.
1) The neck dissection you had in August 2015. Was it radical, modified or selective? If it was Modified or selective
did they remove the neck artery, muscle and/or Nerve? If yes have you lost some functionalities of mouth/tongue/etc...?
2) Is Keytruda for the met to the lymph node in your chest?
3) It appears Cyroablation of tumor in the neck may not have too many side effects. Am I right
or mistaken?
4) Any functionality that you may have lost and I forgot to ask?
The reason I am asking these is that I am scheduled to see a Head and Neck surgeon on 8/20 and my rad oncoloogist has
told me he hopes the surgeon determines I am operable and this is the best choice.
Thanks again
Mehrdad
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NPC isKaty P said:NPC
What is NPC? And, thank you.
Nasopharyngeal Carcinoma.....cancer behind the nose.
P
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I’m not bothered at allmehrdad357 said:Some more questions:
Hello Phrannie51,
I have few more questions that I hope will not bother you. If any of them do, please just don't
answer it or indicate so.
1) The neck dissection you had in August 2015. Was it radical, modified or selective? If it was Modified or selective
did they remove the neck artery, muscle and/or Nerve? If yes have you lost some functionalities of mouth/tongue/etc...?
2) Is Keytruda for the met to the lymph node in your chest?
3) It appears Cyroablation of tumor in the neck may not have too many side effects. Am I right
or mistaken?
4) Any functionality that you may have lost and I forgot to ask?
The reason I am asking these is that I am scheduled to see a Head and Neck surgeon on 8/20 and my rad oncoloogist has
told me he hopes the surgeon determines I am operable and this is the best choice.
Thanks again
Mehrdad
.....
My neck dissection was a modified radical.....they removed one muscle from my neck, and 60 some nodes....3 of which were cancerous. If a neck dissection is going to affect something, it is the shoulder or arm. The cyroablation did affect my shoulder and arm....tho I can raise it above my head, it’s pretty weak. I’m working on it tho
The Keytruda.....I was in my third recurrence, neck and now lungs.....that doesn’t bode well for a future.....my Oncologist said chemo (carboplatin and taxetere) or Opdivo. I said why not Keytruda.....well, you have to get genetic testing to get it. They had tissue from the the dissection, so I said test it....I passed the Keytruda test. I did not want chemo at all....Opdivo would have been second choice
Before I found the trial for the cyroablation, I had found a trial for a drug called larotrectinib.....it is a fantastic up and coming drug....so I asked to send in tissue from the biopsy of the chest node.....I didn’t pass that test....however, anyone looking at last chances should ask to be tested for this drug....it had a 13% complete response and a whopping 76% partial response in the phase I -II trials. It’s worth putting in a mental file.
I’ve lost the regular functionalitit’s that come with radiation to the head....fibrotic muscle in my neck, taste buds are not sharp, and spit is scarce....and I’m starting to bump into swallowing issues......I lost more weight during the last 6 months....the only side effect I get from the Keytruda is mouth sores.
Here’s the deal....if the ENT says you’re not operable, then you get yourself to the closest teaching hospital and ask them. My ENT told me I was inoperable....he didn’t want to touch me with a 10 foot pole. I saw him the day after I got back from Boston.....I handed him a print out of the clinical trial....and said, This copy is for you....i can’t be the only sap in this town who’s inoperable.
P
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My cancer recurrence downgraded from stage 3 to stage 2
I saw the head and neck surgeon yesterday. He spent about 45 minutes examining me, along withhis nurse.
He said it is in "glossopharyngeal sulcus", which is a groove between base of the tonge and right tonsil.
He said it looks very good, it is at a very early stage (stage 2), and it can all be taken care of with surgery,
technically no need for chemo. He said but when I see my medical oncologist, he probably will recommend
2 or 3 sessions of chemo after surgery, just in case.
my radiation oncologist had stated probably stage 3 on 8/2/18, because lymph nodes in the right part of
the neck are also involved. I think he may have been correct, when I mentioned that to the surgeon,
he said the number of cancerous cells are also important. they are very few.
In any case this is steps he wilt take:
1) A biopsy in 2 weeks to (the bottom line) to determine the exact nature of cancer.
2) Opertion on gloss.... and lower part of tonsil.
3) Very conservative/Selective nreck dissection.
He said after all that I should be good again.
Thanks great bunch to phrannie51 who illuminated me how far a human being (like her)
can go with many recurrences of cancer and to some extent joannaw81.
When I have more news I'll post it.
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Great newsmehrdad357 said:My cancer recurrence downgraded from stage 3 to stage 2
I saw the head and neck surgeon yesterday. He spent about 45 minutes examining me, along withhis nurse.
He said it is in "glossopharyngeal sulcus", which is a groove between base of the tonge and right tonsil.
He said it looks very good, it is at a very early stage (stage 2), and it can all be taken care of with surgery,
technically no need for chemo. He said but when I see my medical oncologist, he probably will recommend
2 or 3 sessions of chemo after surgery, just in case.
my radiation oncologist had stated probably stage 3 on 8/2/18, because lymph nodes in the right part of
the neck are also involved. I think he may have been correct, when I mentioned that to the surgeon,
he said the number of cancerous cells are also important. they are very few.
In any case this is steps he wilt take:
1) A biopsy in 2 weeks to (the bottom line) to determine the exact nature of cancer.
2) Opertion on gloss.... and lower part of tonsil.
3) Very conservative/Selective nreck dissection.
He said after all that I should be good again.
Thanks great bunch to phrannie51 who illuminated me how far a human being (like her)
can go with many recurrences of cancer and to some extent joannaw81.
When I have more news I'll post it.
Under the circumustances, this is very good news. Please keep us posted with progress.
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hello
Thanks for the update.
I just wanted to clarify about the chemo. From what I know chemo does not work on head and neck cancer by itself. It is only used together with radiation to strengten the treatment. I am not sure why the doctor suggested 3 sessions of chemo after the surgery. this is something that I never heard off in the past. Perhaps I am wrong, does anyone have any inputs? I am curious.
Anyway I am glad the recurrance was caught early, this is definitely good news!
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2 or 3 chemos clarifiedjoannaw81 said:hello
Thanks for the update.
I just wanted to clarify about the chemo. From what I know chemo does not work on head and neck cancer by itself. It is only used together with radiation to strengten the treatment. I am not sure why the doctor suggested 3 sessions of chemo after the surgery. this is something that I never heard off in the past. Perhaps I am wrong, does anyone have any inputs? I am curious.
Anyway I am glad the recurrance was caught early, this is definitely good news!
The surgeon said: "With surgery alone I will get rid of your recurrence, and nothing else is needed, he added
when you see your medical oncologist he may recommend 2 or 3 sessions of chemo just in case". So when I see
my medical oncologist, if he recommnds chemo after surgery, I will be sure to ask him why.
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2 or 3 chemos revisited again.mehrdad357 said:2 or 3 chemos clarified
The surgeon said: "With surgery alone I will get rid of your recurrence, and nothing else is needed, he added
when you see your medical oncologist he may recommend 2 or 3 sessions of chemo just in case". So when I see
my medical oncologist, if he recommnds chemo after surgery, I will be sure to ask him why.
Hello joannaw81,
I saw my radiatin oncologist today who had initially diagnosed my recurrence on 8/2/18. Since you asked I was also curious about the surgeon told me on Monday. He said if the sugeon finds only very few cancerouts lymp nodes on right side of my neck, then surgery will be thre end of treatment. But if he finds a fair number of cancerous nodes, it will be followed by 2 or 3 sessions of chemo. I asked him that chemo alone does not cure H & N cancers, so why chemo? He said If you have visible H & N cancer (either by Dr. or Cat Scan or MRI) then chemo ha no effect. But if you have very few cancerous cells either in lymph nodes or tonsil or both chemo gets rid of them effectivrely. He said the surgeon puts in my chart the concentration of cancer cells, and then I will find a medical oncologist for you and she/he and I (rad. oncologist) make the decision about chemo or no chemo. Thanks for bringing it up, because both of us learned something new in this process.
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My recurrence Upgraded by radiation oncologist back to stage 3
Hello all,
I saw my radition oncologist today about recuurence of my cancer. When I asked about stage, he said it is Stage 3, because it is present in my right lymph node as well. He said perhaps the reaoon the surgeon told me on 8/20/18 it is stage 2, is the size of primary tumor, which is a bit less than 2 centimeters. Overall he was more concerned than the surgeoon due to right lymph node involvement. But he said I got you the best surgeon at Stanford. I guess time will tell.
Question for Matt: Don't mean to pick on uou, but you stated "Many H&N members have had a reoccurrence of their cancer and they have radiation and chemo again (their words)." I asked radiation oncolist about radiation again, and he said like I told you on 8/2, a site that had 36 doess of rads and cancer recurred cannot be radiated again. It is useless.
Can you please clarify what you said. Like I said I am not trying to pick on you, but if it can be done with radiation & chemo again, I would rather do that than neck dissection surgery.
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Radiation in areas that have been radiated beforedonfoo said:it can be done
There are instances where radiation can be done in areas that were previously radiated. Check on OCF, some of those folks can fill you in.
Hello donfoo,
Thanks for the info. I tried to google Radiation for 2nd time on same site usig OCF or Oral Cancer Foundation and could not find a match easily. if you have a link to it can you please send it to me. Basically at the latest I have until August 30th to change the course of my treatment, not much time.
Thanks
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Link of search
Here is a link of a search I did that provides lots of site links etc. to click on of radiation the second time---
https://www.google.com/search?q=radiation+same+area+second+time&ie=utf-8&oe=utf-8&client=firefox-b-1
Also saw this comment which is from TATA Memorial Centre not in this country-I think India-but the comment makes sense and I think came from a physician whose name is RAHUL Krishnatry. I looked it up and TATA has a Cancer Hospital & Research Centre-----
it cannot be a single straight forward answer. Re-irradiation is critical issue and need due diligence. Previous radiation dose fractionation and time since RT is crucial but there are more factors to be taken care off. As eluded by Hanno:1. the OARs conditions are important: defined by: previous fraction and dose constraints followed, kind of technique used: IMRT?IGRT or conventional/Cobalt therapy, kind of recovery expected as per time lapsed since last Rx : 1/2/5/10 yrs, current clinical evidence of late toxicity and grade.2. previous response to treatment.3 the current method of re-irradiation using: with IMRT?IGRT esp rotational ones like VMAT/ARC/TOMO to have max nrmal tissue sparing,4. Volume of reirradiation expected.5. any surgical intervention in the planned area.6. Planned use of neo/concurrent/adjuvant chemo7.looking at all these you decide current plan of GTV/PTV expansions and other volumes and dose levels to be achieved and your expectations of further control of disease or benifit.So, it is complicated decision and needs lot of consideration than just broadly time since last treatment and dose fractionation used. My answer is not to discourage re-irradiation but to bring due diligence, because every step is critical for patient.I guess it was useful. let me know if you need more informationHope this helps-RussBy the way looked the fellows name up and he is a doctor in cancer treatment---RAHUL Krishnatry currently works at the Department of Radiation Oncology, Tata Memorial Centre. RAHUL does research in Oncology. Their current project is 'Radiation Therapy Incident and Quality program at TMC', Brain tumors and urological malignancies0
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