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NED after chemo yet still 7 weeks of radiation?

ballerinazh
Posts: 8
Joined: Dec 2010

My husband, 28 years old, was diagnosed with stage 4c nasopharyngeal cancer this Sept with distant bone mets. He has just finished his 4 rounds of TPF chemo. The PET scan now is clear, and the doctor says there is no visible cancer, yet she still want to put him on 7 weeks of IMRT. Any of you guys had similar experience? Does it worth all the pain to go through the radiation therapy if there isn't any visible cancer? Thanks.

Junshu

Skiffin16's picture
Skiffin16
Posts: 8124
Joined: Sep 2009

First off, welcome to our forum, great people here, and tons of knowledge and expereince.

Similar scenario, not with me, but a story that my ENT had told me. Of a young lady with similar results. She opted not to have the radiation and last I heard she is fine.

But definitely was not his recommendation.

The option is always his (your husband), I guess it depends on how lucky he feels (in my opinion).

I personally trust my ENT and I have to say, I trust him with my life. Because I feel that his diagnosis, treatment plan, and professional experience saved my life.

He has been spot on with all of his experience and knowledge and even though some things might not be what I like or want, I'd go with his recommendations.

I guess your decisions are going to be based on your relationship with your medical professionals, or someone whom might not have been involved with your specific treatment along the way.

I'm sure you can always find someone that agrees with the choice that you are looking for, but who knows if it's the best choice.

I went through all nine weeks of cisplatin, taxotere and 5FU, then seven weeks of concurrent weekly carboplatin and daily radiation.

My primary (tonsils) were removed first thing. The secondary a tumor or swollen lymph node in my neck dissolved before the last round of the initial chemo. Was I clear of cancer at that time...maybe, probably, but the recommendation was to hit it as hard as I could stand with the hopes of no recurrence.

So I went with their decision and never looked back. Yes I'd rather not had the additional seven weeks. Yes the radiation has the most long lasting effects. But if it killed the cancer long term, it'll be worth it.

Best to you on your hard decison,
John

D Lewis's picture
D Lewis
Posts: 1555
Joined: Jan 2010

The docs really do know what they are doing.

It has been stated elsewhere on this board that going through the Radiation treatments is a piece of cake compared with the Chemo. I had them concurrently, so the comparison was difficult. Best of luck in your husband's efforts to kill the beast. Stage 4 is nothing to mess around with.

Deb

adventurebob's picture
adventurebob
Posts: 691
Joined: Jun 2010

Hi Junshu,
Sorry you're here but welcome. As far as I know I am the only one here with NPC with bone mets. I asked a few months back and couldn't seem to locate anyone. I did 2 rounds of Chemo/Gemzar and had a clean PET. Did 1 more because that's what the protocol was. I then took a couple weeks off, had a PEG installed and have now received 20 rads to the head, 4 to the sternum and 3 to my spine (L3). I've also received 2 more rounds of Cisplatin with 1 more scheduled. They were delivered 3 weeks apart. In total I will do 35 rads to the head, 15 to the sternum, 5 to L3 and 5 to my sacrum.
I was so ready to be done after the 3 rounds and the clean scan but my docs were telling me we needed to keep going with the full protocol; especially because I was young (39) and strong and could tolerate it. Also because we're going for the full cure. No recurrence.
So, I went to MD Andersen and got a second opinion and to a treatment center in Idaho. They both agreed. I'm more than halfway thru now and still feel good about my decision, though I don't feel especially good. I have found the radiation and chemo together to be a bit more unpleasant than just the chemo but I'll make it.
Whatever you decide, please feel free to contact me anytime. I'm sorry that your husband has this cancer with the mets. I had hoped I was going to be the only one. We have another friend on here with a different type of h&n with bone mets also. I imagine she will reply to you soon. Also, everyone on here is incredibly supportive and kind and full of more experience and help than you can imagine. Let us know how we can help. Strength and hope to you.

Bob

Pam M's picture
Pam M
Posts: 2193
Joined: Nov 2009

Junshu,

Sorry you need support - glad you found this site.

The way my doc put it, the chemo (TPF for induction, then carboplatin with rads) would beat down the cancer, and the rads would finish it off. Sounds like your husband's chemo did both jobs. Has your hubby's doc explained why she advises going with radiation, even though he's NED?

rozaroo
Posts: 665
Joined: Apr 2010

Wellcome to the board. I had stage 4b & so far so good. My oncologist felt that chemo & radiation would be my course of treatment so I truly felt it was the way to go. I am almost 11 month's post treatment & it has been a rough road etc but I am greatfull to be here. I wish you both my best on whatever course you decide to take.

ballerinazh
Posts: 8
Joined: Dec 2010

The doc says that even though there is no visible cancer, she knows the chemo-resistant cancer is still there, and only radiation could get rid of it completely. As much sense as it makes, it also made us upset that the mets in the bone will never be completely removed by chemo, and they weren't planning to do radiation on his bones, so I couldn't help thinking, what's the point of radiation in the head and neck if the cancer will always return through the remaining cells in the bone...

Skiffin16's picture
Skiffin16
Posts: 8124
Joined: Sep 2009

I know there is a lot that I don't know specifically to your type of cancer and treatment. But it sounds to me that there might be some communication or mis-communication.

Like I said, I'm not an expert, but I believe that we all have cancer cells within our bodies. It just depends on a lot of variables if they turn back on and become active.

The questions you ask here seem to be good questions that you and your husband should also be asking your doctors and professionals. If they give you answers that you don't understand, have them to tell you again.

Don't give up hope and the fight in mid-stream. You have to stay positive and be very proactive on killing the cancer and keeping it down and out for the count.

Best,
John

ballerinazh
Posts: 8
Joined: Dec 2010

Thanks for the advice. My husband is getting treated in a big hospital, and he doesn't have a ENT doctor that oversees the progress of his treatment, instead he has a chemo doctor and radiation doctor. It was our first meeting with the radiation doctor last week since the clear PET scan, and she seemed to be in a huge hurry... We will meet with her again before the treatment and try to get our questions answered then.

Junshu

ballerinazh
Posts: 8
Joined: Dec 2010

It's comforting to meet someone here that has a similar condition. However, my husband's doctor is not planning to do radiation on his bone mets. She said his bone mets were initially only detectable by PET, not CT, so they are not able to accurately locate the bone mets for radiation treatment. Do you mind sharing some details about your mets? Were they tumors visible on CT?

adventurebob's picture
adventurebob
Posts: 691
Joined: Jun 2010

The mets were visible as spots with the PET, not actual tumors but hot spots. They were pretty bright, almost as bright as the tumors in my head which were quite large. I got two second opinions before starting chemo and the doc at Stanford suggested a spinal biopsy to make sure it was actually cancer and not old injuries because if it wasn't cancer that would mean that the cancer hadn't gotten into the blood and spread to the bone, making it technically "curable" and changing the whole treatment and prognosis. I did get the spinal biopsy which came back "inconclusive but highly suspicious". So we went ahead and assumed that the spots were in fact mets though I remain hopeful that they were not. The standard protocol calls for 3 rounds of Cisplatin/Gemzar followed by 35 rads to the head concurrent with 3 more rounds of Cispatin only and rads to the bone mets based on their size and original illumination. So even though I had a clean PET after the first 2 rounds we have stayed true to course and are following the protocol because it has the best success rate. I really, really, really wanted to be done after the first 3 rounds, especially because I had the clean PET. My second and third opinions both agreed that it was highly unlikely that 3 rounds of chemo had got it all and because the potential for recurrence in the head was so likely and so painful and destructive, I needed to receive the radiation treatment, but dialed down a bit since there were no actual tumors or spots left to radiate. I do receive a bit less radiation over the full course, but not much. It seems to me that if they were able to see the mets with the PET scan they should know exactly where they are and should be able to radiate those spots fairly accurately. Have you received second and third opinions on your husband's treatment? It is ok and sometimes necessary to tell your docs that you need to wait to start anything until you understand everything and have got those other opinions. I have done that 3 different times now with my docs and it has made a big difference in my understanding and confidence in treatment. It's also important for the docs to know that you are the one that decides what course to take and when to start it. Just because it is on their schedule does not mean you have scheduled it. With your husbands clean scan it seems like you should have a little bit of time to step back and really look at the whole picture and get other opinions before doing anything. These are big decisions you guys are making. Don't let anyone pressure you to make them any faster than you feel comfortable with. You'll make the right decision. You'll get through this. My thoughts and prayers are with you both.

Bob

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