NPC Second round of chemo
I was reassured by my rad onco, who came to treating me with some impressive recomendations,
That because of where my cancer and its type that Rads were going to be the primary treatment for me with Cisplatin every week to support the treatment.
I felt reassured by the tomotherapy machines and Her extensive knowledge and most of all the the first day she saw my she said she can cure it.
Then as i went to My Chemo doc i felt more of a vibe lets get them all in and out ( in regards to the patients), he was more stone faced and never really went over much in regards to his perspective into my disease,just kind of in and out so i took that as he supported my rad oncos plan of treatment for me.
So now my 35 rads and 5 chemos are done with all tumors gone,he tells me that i need to come in and do 3 more treatments of cisplatin and 5fu on a increased application.My other onco kind of shook her head but wouldnt directly tell me what she thought till i really pressed.
She said she knew of no protocols that confirm this...whatever that means.I have searced all over online and have found nothing confirmed but what my rad onco is telling me. I see a bunch of people being treated with adjuvant chemo but nothing to support it thru researc.
What do you guys think?
Thanks for being here
Comments
-
I think you know the answer
I have never heard of anything like this with Cisplatin to date but I am not a doctor. What I will tell you that I do know is that my Chemo Doc is probably the most over booked, over worked and over paid individual I ever met, but, if he needed an hour and a half (which he did once) to explain everything I needed to know and answer my questions, that was exactly how long it took. I had appointments where he would get called away with an emergency and I would wait, there was never a come back next week or any other excuse. I am not sure I could put my trust into someone running a mill. I spent too many years in and out of Socialist countries that ran their health care like an assembly line of Volkswagens and saw the results. They're fine if you have a cold but not if you're really sick.0 -
Here's the rub
Lots of us get induction chemotherapy. It makes sense biologically. The intent is to damage and shrink the squamous cell carcinoma, thereby increasing our chances of being cured by the definitive treatment--- whether that be radiation or surgery.
But that's given in advance of, or in advance of and during our definitive treatment.
Then there's adjuvant chemotherapy. That is really salvage therapy. Not designed to cure us, as we are not curable by conventional means. Again, conventional being surgery or radiation. There are lots of drugs, even experimental ones, used for adjuvant chemotherapy. Even viruses and other research based things are given. That's what the research protocals are for.
But when your radiation oncologist says there is no literature support for continuing standard chemo post radiation, that's exactly correct. This is likely someone's pet protocal, derived impirically, not something that a definitive NEJM article can be produced to support.
The chemo is not without risk. And unless I was convinced of a compelling reason for me to do it, frankly I wouldn't. If you had a favorable tumor to begin with (you didn't tell us TNM staging and location), I see no reason for the lengthy extension of your exposure to the poisons.
It is axiomatic that no one has EVER been cured of squamous carcinoma by chemotherapy.
Welcome to the board. You'll get all kind of opinions here:)
Pat0 -
common conundrum
Hi Kyle,
Your question comes up quite often expressed in different ways. Should I do the extra treatment/chemo/surgery (it's usually another chemo), even though there is no research to suggests it's going to increase my chances? One doctor tells you it's simply a good idea, now is the time to attack cells that might have migrated, so another round is a good precaution. The other doctor shakes their head--and you were right to pry their opinion loose.
After 35 rads, and three chemos, my 6 month scan showed borderline radiance in the original lynph affected area. It had showed at three months, but that was too early, so we waited for the 6 month. My rad doc was still shaking her head, the reading was still borderline, but now the other two, the ENT and medical onc were both recommending dissection. I had the dissection and two of 15 nodes removed were cancerous.
Choice two: After some healing from the dissection, my medical onc then recommends another round of chemo. The fact that the two lymph nodes were positive meant a possibility the cancer had spread elsewhere, though scans were clear by then. It would be Carboplatin, not as rough as the Cisplatin, but this one a possible body numb-er, neuropathy of extremities as a possibe result. I already had what turned out to be permanent tinnitus, and hearing loss from the chemo. He said in my case, studies didn't show any benefit from the additional round. But, he said, now was the time to make sure.
I said no, no Carboplatin. He said think it over, just try one. I said no thanks. I understood his position, I don't think he understood mine though he is my favorite doc.
That's the conundrum, that's the choice. If I get a recurrance will it be because I didn't do the round of Carboplatin? Statistics say no. You have to ready to accept the possibility the stats are wrong. The right decision is the one that you make.
best of luck on your decison, Hal0 -
Yessumarah8 said:Just to let you know we have
Just to let you know we have the same treatment, Dec. 08 i would start on chemo cycle, i have NPC too stage 2b.
Its really weird to ...I go back to see my docs on the 5th on December, so we are on almost the same schedule. how are you doing with it all? Its been a rollercoaster for me,but i keep pushing thru it.0 -
Thanks! I have never reallylongtermsurvivor said:Here's the rub
Lots of us get induction chemotherapy. It makes sense biologically. The intent is to damage and shrink the squamous cell carcinoma, thereby increasing our chances of being cured by the definitive treatment--- whether that be radiation or surgery.
But that's given in advance of, or in advance of and during our definitive treatment.
Then there's adjuvant chemotherapy. That is really salvage therapy. Not designed to cure us, as we are not curable by conventional means. Again, conventional being surgery or radiation. There are lots of drugs, even experimental ones, used for adjuvant chemotherapy. Even viruses and other research based things are given. That's what the research protocals are for.
But when your radiation oncologist says there is no literature support for continuing standard chemo post radiation, that's exactly correct. This is likely someone's pet protocal, derived impirically, not something that a definitive NEJM article can be produced to support.
The chemo is not without risk. And unless I was convinced of a compelling reason for me to do it, frankly I wouldn't. If you had a favorable tumor to begin with (you didn't tell us TNM staging and location), I see no reason for the lengthy extension of your exposure to the poisons.
It is axiomatic that no one has EVER been cured of squamous carcinoma by chemotherapy.
Welcome to the board. You'll get all kind of opinions here:)
Pat
Thanks! I have never really been the guy that took other peoples guidance as law...but with this sudden news and sweeping schedule into rad and chemo treatment land, i find myself afraid to disagree with the ones that are doing thier best to heal me.
What you wrote was intelligent, well thought out and based in research and experience..Thank you, Its what i needed to hear.0 -
Did they say why they aresumarah8 said:Just to let you know we have
Just to let you know we have the same treatment, Dec. 08 i would start on chemo cycle, i have NPC too stage 2b.
Did they say why they are putting you thr Adjuvant Chemo?0 -
Hi Kyle
I too had NPC, my first treatment was with no chemo just radiation. I did not know it but I was the first person with NPC cancer that my Oncl dr every seen but he did not tell me that. He treatment me by the standard protocol for treatment someone with cancer. My NPC came back about 11 months later; I went to a different Oncl dr that time that did more Radiation and Chemo, but it still came back a third time. The last time I did not do any more treatment that has all be 6 years ago. I don’t have any more problems with the NPC but have a lot of problems with the side affect of all the treatment.
I suggest getting another opinion as you don’t want to over due it but you do want to make sure you have it all so it don’t come back for a re-match. From what I read you already have done all that is needed to be done so I would think the NPC is gone to never never land and never to come back again.
PS: Welcome to CSN glad to have you here with us.
Wishing you the best
Hondo0 -
Welcome Kyle...
I wasn't NPC, I was STGIII SCC HPV+ Tonsils and a lymphnode.
I am one for the more aggressive approach, or my MD's were I should say. My protocul was set upfront...
Nine weeks (three week cycles) of Cisplatin, Taxotere and 5FU. Then an additional seven weeks of concurrent chemo (Carboplatin) and 35 daily rads sessions.
Surgery (other than tonsils removed) would be dictated based on the outcome of chemo and rads.
The lymphnode actually dissolved between the 2nd and 3rd cycle of the nine week regime'.
Could I have been cured at that point, opting to not have the additional seven weeks of concurrent chemo/rads. I'm not sure, but I was advised to continue the remainder of the protocul, and I did.
Yes, it was brutal, but I wanted to have the best shot "they" thought would treatment provide. They (medical professionals), have much more experience, training, exposure and education concerning treatment than I....that's why they make the big bucks.
Do some of them get it wrong, of course, but how many of them get it right....
For me, now 2 1/2 years post treatment, clean scans and pretty much completely back to my old normal. I have to say in my case, so far they got it right....
Tough decisions....
Thoughts and Prayers,
John0 -
Same TreatmentSkiffin16 said:Welcome Kyle...
I wasn't NPC, I was STGIII SCC HPV+ Tonsils and a lymphnode.
I am one for the more aggressive approach, or my MD's were I should say. My protocul was set upfront...
Nine weeks (three week cycles) of Cisplatin, Taxotere and 5FU. Then an additional seven weeks of concurrent chemo (Carboplatin) and 35 daily rads sessions.
Surgery (other than tonsils removed) would be dictated based on the outcome of chemo and rads.
The lymphnode actually dissolved between the 2nd and 3rd cycle of the nine week regime'.
Could I have been cured at that point, opting to not have the additional seven weeks of concurrent chemo/rads. I'm not sure, but I was advised to continue the remainder of the protocul, and I did.
Yes, it was brutal, but I wanted to have the best shot "they" thought would treatment provide. They (medical professionals), have much more experience, training, exposure and education concerning treatment than I....that's why they make the big bucks.
Do some of them get it wrong, of course, but how many of them get it right....
For me, now 2 1/2 years post treatment, clean scans and pretty much completely back to my old normal. I have to say in my case, so far they got it right....
Tough decisions....
Thoughts and Prayers,
John
Like John, my chemo doc and rad doc have outlined the same treatment protocol,already completed the C/T/5FU. I'll have 4 more rad treatments than he had, 19 out of 39 rads so far. The docs are the experts, I have to rely on their training and experienceand, for me I have faith in what they are doing for me. I guess the choice to stop or opting to lessen the treatment plan is a choice we all have, me, I'm seeing this through.
Best wisshes in what ever your decisions are.
Linda0 -
NPC stage 3
Hi Kyle,
I was diagnosed with NPC stage three as i had 3 lymoh nodes involved along with the tumor in my nasopharynx. I just completed my treatment with Dana Farber cancer institute in Boston, MA. My oncology team, surgical, medical and radiation all agreed on the most aggressive plan to treat me. I am 39 and was for the most part very healthy so they believed I could take it and come out of this cancer free. I was given 7 weeks, 35 treatments of radiation and received cisplatin concurrently on the 1st, 3rd and 7th week during radiation. Once we completed that I took on 3 more rounds of chemo cisplatin and 5FU. This treatment they said was very aggressive and was going to be very hard but they all felt strongly I could take it and beat the he'll out of this cancer. Well it was incredibly difficult and I am still trying to heal ( it's only been three weeks since my final chemo) but the PET showed no signs of any of the tumors so to me right now the extra hell was well worth it. I was given the choice to only take on two of the three extra chemos. The drs. Said there are no studies to show that having 3 was any better than just two but I couldn't help but think, I've come this far and I'm still standing. If the drs say it should be three then I'll do it. I wanted to do all that I could and not have regrets that I should have done more.
I know it's a tough decision but I'm sure you'll choose the right one for yourself. I wish you luck and I believe you will get through this.0 -
Thanks CathelenCathelen72 said:NPC stage 3
Hi Kyle,
I was diagnosed with NPC stage three as i had 3 lymoh nodes involved along with the tumor in my nasopharynx. I just completed my treatment with Dana Farber cancer institute in Boston, MA. My oncology team, surgical, medical and radiation all agreed on the most aggressive plan to treat me. I am 39 and was for the most part very healthy so they believed I could take it and come out of this cancer free. I was given 7 weeks, 35 treatments of radiation and received cisplatin concurrently on the 1st, 3rd and 7th week during radiation. Once we completed that I took on 3 more rounds of chemo cisplatin and 5FU. This treatment they said was very aggressive and was going to be very hard but they all felt strongly I could take it and beat the he'll out of this cancer. Well it was incredibly difficult and I am still trying to heal ( it's only been three weeks since my final chemo) but the PET showed no signs of any of the tumors so to me right now the extra hell was well worth it. I was given the choice to only take on two of the three extra chemos. The drs. Said there are no studies to show that having 3 was any better than just two but I couldn't help but think, I've come this far and I'm still standing. If the drs say it should be three then I'll do it. I wanted to do all that I could and not have regrets that I should have done more.
I know it's a tough decision but I'm sure you'll choose the right one for yourself. I wish you luck and I believe you will get through this.
My problem
Thanks Cathelen
My problem is that I get mixed results from my oncologists...one say this way the other says that way. Sounds like we have a very similar path in front of us.
Did you find the radiation harder to deal with then the 3 rounds of chemo alone?
According to my rad onc all tumors are cleared and we are waiting to do a pet scan to confirm.
I meet with them both on the 5th and the 8th..i guess i will know more then.0 -
Hi KyleKyle Gilmore said:Thanks Cathelen
My problem
Thanks Cathelen
My problem is that I get mixed results from my oncologists...one say this way the other says that way. Sounds like we have a very similar path in front of us.
Did you find the radiation harder to deal with then the 3 rounds of chemo alone?
According to my rad onc all tumors are cleared and we are waiting to do a pet scan to confirm.
I meet with them both on the 5th and the 8th..i guess i will know more then.
To me the radiation was the hardest part of my treatment and the second time was worse then the first. But life is still good and I am still here today.
Wishing you well
Hondo0 -
I actually handled the firstKyle Gilmore said:Thanks Cathelen
My problem
Thanks Cathelen
My problem is that I get mixed results from my oncologists...one say this way the other says that way. Sounds like we have a very similar path in front of us.
Did you find the radiation harder to deal with then the 3 rounds of chemo alone?
According to my rad onc all tumors are cleared and we are waiting to do a pet scan to confirm.
I meet with them both on the 5th and the 8th..i guess i will know more then.
I actually handled the first 6 weeks of the chemo/radiation quite well but week 7 and 8 took me down for just a bit. I bounced back quickly. I think I just didnt keep myself hydrated enough. Any way the first round of the cisplatin and 5FU was tougher than I expected and because I was still healing from chemo/rads I struggled. It took me about two weeks to pull out of the side effects. The most amazing thing though round two and three came and went without any major problems. Did I feel great no but I did not feel any major pain and was able to eat and drink. I honestly did not want to do round three but now that I have I feel relieved that I tackled it and I am getting stronger every day. My sincere hope is that all this work has concurred any cancer in me and it will not return.0 -
Same treatment plan for NPC
Hi Kyle,
I am also NPC being treated at Sloan Kettering. I finished 33 rads concurrent with Cisplatin on weeks 1, 4 and 7. The chemo got progressively harder each time. I am now going to have 3 more Cisplatin/5FU infusions post radiation. Do bear in mind that NPC is not extremely common and most people on the board may have some other form of H&N cancer. With that in mind, each type of H&N cancer is treated very differently. In fact, it even seems like the treatment plan for NPC has changed and hopefully improved prognosis over the recent years. What I'm saying is, be sure that you are not comparing apples and oranges. That said, everyone is different so it's probably best to consult with your doctors if they advise that you should deviate from the standard treatment plan.
I am also rather apprehensive going into the post rad chemo because of my experience with tinnitus after the 3rd Cisplatin treatment. But I am also afraid of what the consequence of refusing treatment might be.
What ever you choose, I hope it all turns out well for you.0 -
Hi All,ac said:Same treatment plan for NPC
Hi Kyle,
I am also NPC being treated at Sloan Kettering. I finished 33 rads concurrent with Cisplatin on weeks 1, 4 and 7. The chemo got progressively harder each time. I am now going to have 3 more Cisplatin/5FU infusions post radiation. Do bear in mind that NPC is not extremely common and most people on the board may have some other form of H&N cancer. With that in mind, each type of H&N cancer is treated very differently. In fact, it even seems like the treatment plan for NPC has changed and hopefully improved prognosis over the recent years. What I'm saying is, be sure that you are not comparing apples and oranges. That said, everyone is different so it's probably best to consult with your doctors if they advise that you should deviate from the standard treatment plan.
I am also rather apprehensive going into the post rad chemo because of my experience with tinnitus after the 3rd Cisplatin treatment. But I am also afraid of what the consequence of refusing treatment might be.
What ever you choose, I hope it all turns out well for you.
I have talked with
Hi All,
I have talked with both my docs and they said that adjuvent chemotherapy for NPC has not been thru any trials or in any open protocols that supports any benefits towards curing NPC...Concurant chemo has.
It does seem that its the consensus of most Med Oncs across the states to suggest Adjuvent Chemo as part of treatment looking at the other NPC people and their treatments on this board. Why? Maybe its the school of thought to blast the cancer with all they have right from the beginning...or maybe other reasons i am not going to contemplate.
Again I was excited about the enthusiasm of my Rad Onc and when she said Rads and concurrent chemo and thats it and she could cure me with that treatment.... I was suprised when the med onc suggested otherwise a month into treatment.
My rad onc said treatment has cleared everything up and i reacted well right from the begining of it all, said we couldn have asked for a better outcome.
One of the other factors I have to take into account is that I can not afford another 3 months of treatment. my insurance will lapse if I dont get back to work.Maybe it could have been planned out better if my docs got on the same page from the get go but here we are.
So as of now i am going to pass on the adjuvant chemo and pray that I am making the right decision.0 -
KyleKyle Gilmore said:Hi All,
I have talked with
Hi All,
I have talked with both my docs and they said that adjuvent chemotherapy for NPC has not been thru any trials or in any open protocols that supports any benefits towards curing NPC...Concurant chemo has.
It does seem that its the consensus of most Med Oncs across the states to suggest Adjuvent Chemo as part of treatment looking at the other NPC people and their treatments on this board. Why? Maybe its the school of thought to blast the cancer with all they have right from the beginning...or maybe other reasons i am not going to contemplate.
Again I was excited about the enthusiasm of my Rad Onc and when she said Rads and concurrent chemo and thats it and she could cure me with that treatment.... I was suprised when the med onc suggested otherwise a month into treatment.
My rad onc said treatment has cleared everything up and i reacted well right from the begining of it all, said we couldn have asked for a better outcome.
One of the other factors I have to take into account is that I can not afford another 3 months of treatment. my insurance will lapse if I dont get back to work.Maybe it could have been planned out better if my docs got on the same page from the get go but here we are.
So as of now i am going to pass on the adjuvant chemo and pray that I am making the right decision.
You have no need to feel you are responsible for this choice. You said everything you ever needed to in the first several lines of this post: "I have talked with both my docs and they said that adjuvent chemotherapy for NPC has not been thru any trials or in any open protocols that supports any benefits towards curing NPC...Concurant chemo has."
It isn't your responsibility when they have handed you the literature consensus. I've previously written you about the danger of MD's practicing outside the literature because of their perssonal biases. In a case like yours, with literature support from the mouths of your own treating physicians, that there is no advantage to extending treatment, you are completely justified in not proceeding beyond what your resources allow.
Don't sweat it, man. You're going to do well.
Pat0 -
Hi KyleKyle Gilmore said:Hi All,
I have talked with
Hi All,
I have talked with both my docs and they said that adjuvent chemotherapy for NPC has not been thru any trials or in any open protocols that supports any benefits towards curing NPC...Concurant chemo has.
It does seem that its the consensus of most Med Oncs across the states to suggest Adjuvent Chemo as part of treatment looking at the other NPC people and their treatments on this board. Why? Maybe its the school of thought to blast the cancer with all they have right from the beginning...or maybe other reasons i am not going to contemplate.
Again I was excited about the enthusiasm of my Rad Onc and when she said Rads and concurrent chemo and thats it and she could cure me with that treatment.... I was suprised when the med onc suggested otherwise a month into treatment.
My rad onc said treatment has cleared everything up and i reacted well right from the begining of it all, said we couldn have asked for a better outcome.
One of the other factors I have to take into account is that I can not afford another 3 months of treatment. my insurance will lapse if I dont get back to work.Maybe it could have been planned out better if my docs got on the same page from the get go but here we are.
So as of now i am going to pass on the adjuvant chemo and pray that I am making the right decision.
Sometimes all we can do is pray; I never did treatment for my third recurring of NPC. That has been 6 years now so I live everyday on borrowed time and who knows how long God is going to let me live.
Take care
Hondo0 -
We're all rolling the diceKyle Gilmore said:Hi All,
I have talked with
Hi All,
I have talked with both my docs and they said that adjuvent chemotherapy for NPC has not been thru any trials or in any open protocols that supports any benefits towards curing NPC...Concurant chemo has.
It does seem that its the consensus of most Med Oncs across the states to suggest Adjuvent Chemo as part of treatment looking at the other NPC people and their treatments on this board. Why? Maybe its the school of thought to blast the cancer with all they have right from the beginning...or maybe other reasons i am not going to contemplate.
Again I was excited about the enthusiasm of my Rad Onc and when she said Rads and concurrent chemo and thats it and she could cure me with that treatment.... I was suprised when the med onc suggested otherwise a month into treatment.
My rad onc said treatment has cleared everything up and i reacted well right from the begining of it all, said we couldn have asked for a better outcome.
One of the other factors I have to take into account is that I can not afford another 3 months of treatment. my insurance will lapse if I dont get back to work.Maybe it could have been planned out better if my docs got on the same page from the get go but here we are.
So as of now i am going to pass on the adjuvant chemo and pray that I am making the right decision.
Kyle,
I apologize if I made you feel bad about your decision. I just wanted to make sure that you covered all the bases.
As you already know, we're all simply rolling the dice with our treatment decisions and nothing is certain. I personally had colorectal cancer 3 years ago before I got my NPC diagnosis. I sometimes wondered if my decision to go with the standard treatment protocol for my first cancer might have caused my second primary cancer (NPC). I guess I will never know and besides that, I know that it's pointless to dwell on what could've and should've been. All we can do is hope and pray.
Best of luck and I'll be thinking of you in prayer.0 -
Hi Andrewac said:We're all rolling the dice
Kyle,
I apologize if I made you feel bad about your decision. I just wanted to make sure that you covered all the bases.
As you already know, we're all simply rolling the dice with our treatment decisions and nothing is certain. I personally had colorectal cancer 3 years ago before I got my NPC diagnosis. I sometimes wondered if my decision to go with the standard treatment protocol for my first cancer might have caused my second primary cancer (NPC). I guess I will never know and besides that, I know that it's pointless to dwell on what could've and should've been. All we can do is hope and pray.
Best of luck and I'll be thinking of you in prayer.
Wow I did not know you had a fight with this stuff before but in a different area of the body. The doctors never did find the primary cancer in me; they just kept fighting what they could see.
Take care
Hondo0
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