crazy request for my oncologist? - Page 2

Kellennea · 11-21-2011, 08:56 PM

Chem -

I did 6 rounds of TCH and two friends who are also Her2+ also did 6 rounds. I have one friend who is triple negative and she did 4 rounds. Another friend is ER/PR+ Her2-, she did 4 rounds. Its hard to say. Everyone seems to be different. But wow, nothing like throwing a loop in the process.

Maybe meet with both Oncologists and hear each of their reasoning . Good Luck

K.

Lauriesh · 11-22-2011, 06:01 AM

I just had to comment on Chekmark's comments about what her nurse said. Stage 4 is not a chronic condition. It is a terminal illness, with over 40,000 women dying each year.
I am sorry, I am not trying to scare you, but as a stage 4 woman, I take offense when medical professionals lump it in with diabetes, etc.
While life expectancies have increased, many women, especially young women with aggressive disease only live 2 -4 years.

I was diagnosed stage 2 in 2005, and diagnosed stage 4 in 2010. I wish I wouldn't have spent one minute worrying whether the cancer would come back or not, as it is a minute wasted.

Laurie

pibikay · 11-22-2011, 07:06 AM

Hi All
I have not logged in for sometime as I had to care Hema through her abdominal pain and a common cold.Hema;s Onc is of the view that intially 6-9 doses of herceptin followed by tykerb will be the best for a stage IV patient,
Hema had 6 courses of mixed chemo in five of which she had herceptin and four more herceptin all in 3 week intervals.
During her last visit I asked the Onc what is lying ahed.He said if Tyberb stops being effective we have to go in for new options which are now avsilble
All the best for all of my sisters

NanaJoni · 11-22-2011, 07:30 AM

Teach - I was supposed to get 6 TCH but due to complications (and hospitalizations after 3 of 4 tx), only finished 4. Then only got to do about 10 months of Herceptin instead of 12. I'm doing great, NED, but still have that lingering feeling "What if..." about not finishing all the scheduled treatments. My onc assures me that as a Stage 1, we did enough. Sometimes I think I'd feel the same feelings if I'd finished more tx's - it's just the standard fear of recurrence regardless of how much we do. But as each day goes by I get more content with what we did and less worried about the future. From other postings, that seems to be the usual feelings each of us goes through. Your decision has to be right only for you. Wishing you the best.

'lizbeth · 11-22-2011, 08:03 AM

Oh, I wish I had done 4 instead of 6 treatments. I didn't do so well, after a few treatments I was worn to a nub and didn't have the strength to stand up to my oncologist, who, after the 3rd treatment, insisted on more.

Then a study came out that showed a lower re-ocurrence rate in 4 treatments over 6. Argh. If I could redo, I'd put my foot down and say No! No! No!

However, I'm dealing with side effects that affected my cognitive function. With hindsight being 20/20, I wish that I had done more to protect my poor little brain from cancer treatment.

Where is that study? Probably posted somewhere on this site.

My advice - go with your womanly intuition. If you feel inside the best choice is two more TCH, then do it! If your own instincts tell you that you'd be okay without it, then that is likely the best choice. Listen to your body, do your research, ask questions.

That is my 2 cents,

'lizbeth

chekmark · 11-22-2011, 11:06 AM

Chem,
I say whats another 6 weeks, you already know what you can tolerate, you already lost your hair. It so frustrating when we get conflicting treatment options, it can never be simple. Now that I am done it is easy for me to say go ahead and get the 6 but if I was still in chemo I would probably be where you are at and think that 4 is enough. If there was just a litte dial that we could turn and it would have the answers we would be set. Whatever you decide it will be the right decision for you. Good luck to you. I hope you continue to do well. Herceptin is so much easier. I hope you have a great holiday. God Bless.Darlene

CoolBreeze · 11-22-2011, 12:47 PM

I might find another doctor for a second opinion and use him as a tiebreaker - I'm not sure why they would put you in this spot now but you need to understand both sides of why they are suggesting lengths of chemo, and figure out what gives you the best odds.

I agree with Laurie, Stage IV is not a chronic condition, like diabetes, and any nurse who tried to minimize my disease by saying that to me would not be my nurse for long. In fact, I might suggest to whatever doctor supervises her that she go back to school and get retrained. Stage IV breast cancer is a terminal illness and there is no cure. While if it is confined to the bones, many women can live a decade or more, that's a far cry from it being a chronic illness that can be treated indefinitely.

Sometimes people, in an effort to try to put the best spin on a situation, say unhelpful things, but it's my belief that a medical professional, even if only a nurse, should know what they are talking about. If they have the desire to put a positive spin on something, they can do so without pretending it isn't what it is. Saying "there are new advances all the time" is true. Saying "it's a chronic condition that we can treat for decades with herceptin" is not. They shouldn't be lying to you to keep you from being scared.

Lien · 11-22-2011, 01:05 PM

Hi Chemteach and others.

I was diagnosed in 2004 and never had chemo or Herceptin and am happily dancing with NED.

Treatment is tough, but for many finishing treatment is so scary they'd rather stay on it. After you stop actively fighting the cancer, it feels as if you are a sitting duck, waiting for the gun to get you.

This fear and anxiety is part of the deal. It comes with having a cancer diagnosis. But we can't stay in treatment forever when there's no evidence of disease. We have to take the plunge and move on. However scary that may seem, it is doable.

Hang in there, Girls! You can do it!

Hugs

Jacqueline

NanaJoni · 11-22-2011, 01:11 PM

I know it may sound crazy but we all have different coping mechanisms. Even at 63, I sometimes feel like the cancer and treatment were like pregnancy - took around a year to start, finish and recover; had a great outcome almost like a new life; you forget the bad parts quickly; life is wonderful again. And I'm laughing as I just had a thought: "And you never want to do it again!!!"

Jean · 11-22-2011, 07:58 PM

So normal to feel concern when your last herceptin treatment has arrived. I have said many times I wish
there was a tune up session of herceptin...something like a 5,000 mile tune up (like our cars).
lol....

But the time comes when treatment ends and we are pushed out of the nest to live on. Sort of like seperation anxiety.

Time - time is the only healer. As the weeks pass you will begin to adjust not going in for treatment. Sounds so strange doesn't it? That we would miss having herceptin. After a few weeks you will see that you are
really ready.

Best wishes to Kelly and Chekmark and huge Congratulations on finishing your treatment. Before we know you will be posting your 1st cancerversary.

hugs,
Jean

chekmark · 11-23-2011, 05:33 AM

Just for the record, my nurse did not say that stage 4 was treated as a chronic condition. I am sorry if it was misinterpreted that way. She said that stage 1, 2 and 3 were since there is such a good response and that even stage 4ers are doing better with treatment and living longer. I am so sorry if I offended anybody. I was only repeating what was said to me. I thought this was a support group.

chemteach · 11-23-2011, 09:02 AM

It's tough to make this call on whether to go with 4 or 6 rounds of TCH. I tolerate it well, yet I hate how awful I feel. I've lost my hair. Another doctor friend of mine said, "What if there's another lingering cell somewhere?" I want them all gone so I don't have to repeat this in a few years. Is a 6 round treatment more of a guarantee than a 4 round treatment? No one can make that call. Here I am, a Stage 1 little bitty cancer, and you ladies out there with big biopsies and multiple chemos and liver resection surguries and hospital stays are inspiring and nurturing us newbies. It is a time to be thankful for you, and my prayers are with you daily! I shall focus on the good in all this. You are all part of the good.

NanaJoni · 11-23-2011, 09:03 AM

Chek - I think most of us understand what you meant by "chronic". Having worked in a college of medicine for 15 years, most health professionals would classify any treatment that is ongoing for months or years as chronic, regardless of prognosis. But many of us have had bad experiences and are defensive for each other that we could get bad advice. We all bring a lot of emotion to this board - it's so easy to misinterpret written responses. I would hope that many of our stage IV folks would chime in that they feel their conditions are chronic and many have been in treatment for years with a great quality of life. Cancer and its treatments are a rollercoaster ride for sure. I was desparate for as much info as I could find last year when I was making decisions and doing treatments, but ultimately, those decisions were between me and my docs. The key is having a medical team you trust with your life.

chekmark · 11-23-2011, 02:09 PM

Thanks Nana for understanding and not biting my head off. Again I apologize. I have an outstanding medical team and if I had to do it all again I would continue with them. I was just asking for alittle insight but it got blown out of proportion. Happy Thanksgiving everyone.