Poor results after three sessions of chemo - scared

amarantha

Hi friends. I'm an American living in France, where I am being treated for breast cancer. I have not been told I have Inflammatory Breast Cancer, (the doctors seem  unwilling to admit as much ) but ALL my symptoms EXCEPT for the redness match IBC. I'm being treated at a schnazzy new regional cancer center, and have had three sessions of FEC - spaced 21 days apart. The next three sessions were planned to be Taxotere. I had my midway MRI, and it did not show much improvement (no more than a 20 % reduction), so I was expecting that the oncologist would choose a different cocktail for the next few sessions, maybe attack with dose dense, or try something more aggressive, but instead she said that probably it wasn't worth doing any more chemo, and I would probably move directly to surgery (as is typical for IBC, there are no clearly defined lumps - just vast sheets of weirdness, covering a large area of the breast, and it had been immediately been deemed inoperable by the surgeon when I was first diagnosed). There will be a meeting on Monday between the surgeon and several oncologists at the schnazzy regional cancer center to discuss my case, but I began to suspect from talking to the (very young) oncologist that she did not seem to agree that this is IBC. I told her, I hoped to continue with chemo, but hoped they would try another cocktail, but she said that if FEC isn't working, which is the standard treatment for breast cancer, than it wasn't worth pursuing any other chemo (not even the Taxotere !!) -- and I was just shocked. I thought (from reading this site) - I mean I sort of gathered that there were all sorts of new and different kinds of chemo that could be tried. I'm so scared, because from what I've read (in France they don't want you to read anything !!) -- I understand that IBC is much more survivable if there is chemo first. I'm very scared that if my cancer hasn't responded well enough to the chemo that I'm doomed. What can you tell me ?

[edited to say : this situation has evolved considerably from the original post, updates have been posted on this thread]

DarlingDoris

Amarantha, I'm so sorry about your situation. Is there any chance of a second and/or third opinion? I truly feel for you and hope for an improvement.

amarantha

HI DarlingDori, thanks for answering. I sure would love a second opinion. All the regional oncologists and the surgeon will be battling this out together on Monday, I guess that constitutes a variety of opinions. I hope the response will be to move on to the Taxotere anyway. If not, I might have to see someone in another region, not quite sure how to do that. Meanwhile, I'm trying to inform myself. Thanks so much for responding. It's nice to know there's someone out there !

alicki

Hello, 

If it comes to nothing, lose no more time and get in contact with l'institut curie. They have an excellent reputation: www.cancerdusein.curie.fr

good luck,

alicki

Kicks

I did 4 DD A/C and Dr told me if there weren't  after the 2nd one, we'd change before the 3rd.  I got good results after the 1st DD A/C.  My TX plan was different than many IBCers.  I only did AC neoadjuvant and then Taxol adjuvant.  Many do more than one neoadjuvant.

Not that it matteres really but what part of France do you live in?  I live in Moulins (d'Allier) for 3 yrs when Daddy was stationed there.

amarantha

Well I received the call from the oncologist today after the weekly staff debate, where the surgeons and the various oncologists of the region thrash out the various cases, and try to come to a scientific consensus. They have decided to do at least one more chemo session, changing the molecule. (*But to what ? She will explain it all to me on Wednesday.)Then we will evaluate again and see if surgery needs to happen immediately. I do hope they will move on to the Taxotere.

Bon, your answer reflected EXACTLY the concerns that I have ! those are the concerns I expressed to the oncologist ! 

Alicki, I would love to be seen by the Institut Curie, don't know how it works -- I think we are limited to using the resources in our region, unless there are special circumstances, but I will certainly explore the options.

Kicks, I'm in the Poitiers region. 

Thank you all so much for sharing your concerns and your experiences !

alicki

Hello, 

as far as I know (I'm Swiss but have French friends), YOU ARE NOT LIMITED. You need to call them, if you wish that. Or have a French friend call them

Take care,

Alicki

alicki

Hi again, 

All you need is a referral from your doctor, even GP - you can phone them. Check out their website and then see what you wish to do. 

All the best,

Alicki

amarantha

Thank you alicki !

kjsimpson

Amarantha,

I had a complete response with Taxotere and Carboplatin (6 rounds, 21 days apart).  When they did the pathology, after my surgery (about 4 weeks after my last chemo), they couldn't find a live cancer cell.  Found lots of dead IBC cancer, but nothing alive.

I'm only an expert in my own cancer treatment.  I haven't even stayed at a Holiday Inn Express recently.  But, I would strongly suggest you either convince them to try the taxotere or get a second opinion.

Best wishes.

amarantha

HI kjsimpsom, I'm really glad to hear your story. I'm very encouraged to hear that the Taxotere and Carboplatin really worked for you. I think you'll be glad to hear they began me on the Taxotere today ! (Who'd of thunk I'd be so happy to do taxotere). I was told they might combine the chemo with some radiation (I've never heard of doing them together) if needed. And that it is still possible they will do the surgery earlier than expected. 

amarantha

P.S. I finally got the oncologist to admit that we are dealing with inflammatory breast cancer, but just not the classic kind, a slightly different kind (because I didn't have very much redness at the outset). 

Kicks

I had no redness at all with my IBC.  I was never told that that made it a "different kind" of IIBC - just Inflammatory Breast Cancer.

amarantha

HI Kicks, thanks for your story. Yeah, right ?  That's basically what I answered to them, LOL.  I had basically diagnosed myself by reading the symptoms on wikipedia. Honestly, I think the doctors just really didn't want me to know. I think the French have a problem with making medical information available. I can not tell you how many times I have been told NOT to " read anything on the internet !!" I say "I have a right to inform myself" ... it's just such a different philosophy ! But I am an American, and an information addict, so no way they can stop me. I think it drives them nuts to have an informed patient !!  but &*^%-em if they can't take a joke !

amarantha

Dear Bon : and then what happened ?

alicki

hello,

Just wondering if you had contacted curie? I am very familiar with European "don't read the internet"! 

Best 

Alicki

amarantha

Thank you so much for your story, Bon. I'll see if I can find that pinned thread. I'm very glad to see you lived to tell the tale !!

kjsimpson

Amarantha,
I'm glad they got you on the taxotere.  That

Radiation during chemo seems an odd combo for IBC.  My experience has been chemo, surgery, then radiation.  I'm in the middle of radiation treatment right now.  Like I said earlier, I had a 100% response with chemo.  When they did the pathology from the surgery, they could not find a living cancer cell (lots of dead ones!).  I thought that was part of the IBC protocol... chemo, then surgery (where they could analyze the chemo response with the pathology), then rads for insurance.

I hope things are going well.  :-)

amarantha

HI all, well, I just saw the surgeon, she says we'll do the rest of the Taxotere as planned, and then surgery on May 2. After which, there will eventually be radiation. So that is pretty much as according to the ordinary IBC protocol. I have a meeting with the oncologist also in a week. I hope she will find that the taxotere is having an effect. It seems to me that the breast has gone down a little, but it might just be my imagination. KJ, you who had a 100% response with chemo, could you feel that the chemo was working  before they told you there had been such a good response ?

amarantha

Three weeks after the first Taxotere - met today with the oncologist, who sees things a bit differently from the surgeon, and wants to see if she can get the cancer to melt away ("fondre") a bit more before the eventual surgery. She is disappointed with the result of the Taxotere, based on the fact that the breast still has a large area inside that is hard like cardboard, and that the skin still shows somewhat "peau d'orange" -  therefore we will be moving onto a new protocol of chemo + radiation. It will be Taxol + Cisplatine, every 21 days - requiring 2 day hospitalisation each time (mainly for hydration), with a supplementary dose of Taxol every J8. The chemotherapy will be complemented by radiation, beginning probably the second week sometime. We start the Taxol+Cisplatine this coming Monday, at which time I will also meet with a radiation oncologist to find out what it will all be about. I'm very glad they're trying something, anyhow, worried there has been so little response to chemo. I also asked if the tumours were receptive to progesterone (I had only been told that they are Herceptin negative, and estrogen +) and the response was - it is only marginally responsive to progesterone. Anyhow, I came away feeling very grateful that a new radical approach is being tried. Very excited about that really, and sort of looking forward to being taken care of in the hospital - am I perverse ? like going away to camp ...  The result is also that the surgery will need to be slightly postponed.  I feel upbeat about the new treatment, but writing this makes me realise that I'm far from being "out of the woods". 

Akevia

amaratha

  Sorry to hear about your chemo not working. I have IBC and I'm on my 8th treatment of taxol only and my breast is looking better. I also have a tumor it was pretty large and it shrink a lot and the orange peel appearance is going away. I hope the taxol will work for you as well, but I'm in a weekly taxol but nit sure if that makes a difference. I hope everything turns out okay. Good luck 

alicki

amarantha,

Just a quick word to wish you well with the  rest of your treatment. It sounds as the new health provider certainly knows what she/he is doing.

All the best,

Alicki

amarantha

Thank you for your good wishes, Alicki. New health provider ? you mean the oncologist ? I sure hope she does  know what she is doing. It sounds like a bit of an experimental treatment. 

I'm interested to know if the molecule that worked for kjsimpson (carboplatin) is related to Cisplatin.

Bon  -- I couldn't your thread. I'm disappointed - I so much would like to read it - I can't find any pinned threads for IBC, and the link you provided goes to an error message  Can you try again ? Thank you !

amarantha

Katherine, I just checked out your blog. You are beautiful ! 

Re-reading your post here, yes - I had expected they would do chemo, then surgery, then radiation. But the chemo didn't work, so the oncologists don't think surgery is safe yet, although the surgeon seemed to think it would be okay. Since the affected area (I guess I can't say "tumours") is very large - and close to the skin, they're trying this new fangled thing of combining radiation with radiation-senstising chemo - in the form of Cisplatine and Taxol. I've had four radiations treatments and two of these senstising chemo sessions now. I can tell the radiation seems to have already made some strange sort of 'hole' in the hard mastitis-like area of the breast, and am very curious to see what the  radiation oncologist and the oncologist will say next Friday (in a week). Meanwhile, I'm feeling much more yucky than we were just doing chemo once every three weeks. The stomach pain is constant. But I'm not really nauseated anymore. Meanwhile the breast has swollen back up to it's original pre-treatment size, so I'm feeling a bit worried... grrr. 

amarantha

Hi Akevia, thank you so much for posting. 8 treatments of taxol ! Does that mean you finished with chemo ? What's next ?

amarantha

Well, I've finished all the chemo (begun in December) and only have six radiation treatments left. The chemo was considered a failure, and the results of the combined chemo-radiation are disappointing to say the least. At least the cancer has not progressed, said the radiation oncologist, after a three second palpitation of the breast. But how does he really know ? The PET scan is scheduled for May 6, and I have a consultation with the surgeon right after the TEP scan.  I'm not really even sure there are safe enough margins to operate yet. But the surgery is scheduled for the 20th of May.  So the next few weeks will be interesting...

amarantha

Good results, according to TEP scan with this method ! (will post more after surgery)

alicki

Hello, 

Glad to hear it. I was wondering about the French method of dealing with IBC

I guess you've just completed surgery. Hope it went well

alicki

(No I don't have IBC, just weird inflammatory conditions which keep coming on and freaking me out).

amarantha

HI alicki, YES I had my surgery yesterday, and already feel quite fine. Almost NO PAIN. The surgeon told me she made a horizontal scar (I will see it tomorrow) - the size she drew in the air with her hands looked like about ten inches -- and from this same incision she took out the whole breast as well as a wad of tissue under the arm containing lymph nodes. She spared the area in the underarm where I had had radiation burns (well healed by now) and she estimated she took probably about 7 lymph nodes but only the pathology report will tell how many.  I had been expecting a much worse surgery, and had expected her to slice me open under the arm and take out all the lymph nodes (but was really hoping she wouldn't, so I was glad she didn't). She said that there was no point in trying to take out most or all of them  - because we need lymph nodes to fight infection, etc. I was glad to hear that. Bye the way, my surgeon operates out of a private clinic that [i]cooperates[/i] with the big public (University) hospital, but is independent from it. I was happy to have my surgery in the private clinic because the surgeon is highly reputed, and I wanted a bit less of a cattle-barn atmosphere which is how my previous surgery (hysterectomy) here felt.

There is a drain and it is draining. I was earlier told that I'd be going home tomorrow (Thursday) but now it seems unlikely that I will go home before Friday, because they won't send me home with a drain. (Is that different from US practises ? I seem to remember hearing about people being sent home with a drain). Anyhow, I told the nurses that I was happy to stay here if I could make them laugh. (Somewhat of a challenge...)

Also -- something they did that I found rather touching - a nurse asked if I had a prosthesis yet -- I didn't, so she called and arranged for the prosthesis lady to come and bring me one tomorrow. The surgeon (a lovely lady surgeon) said she wanted me to have the prothesis in hand before she showed me the scar (!) and she wanted to show me the scar before I went home, because she didn't want me to have to face seeing it for the first time alone (!). Is that amazing or what ?

amarantha

HI alicki, YES I had my surgery yesterday (Tuesday), and already feel quite fine. Almost NO PAIN. The surgeon told me she made a horizontal scar (I will see it tomorrow) - the size she drew in the air with her hands looked like about ten inches -- and from this same incision she took out the whole breast as well as a wad of tissue under the arm containing lymph nodes. She spared the area in the underarm where I had had radiation burns (well healed by now) and she estimated she took probably about 7 lymph nodes but only the pathology report will tell how many.  I had been expecting a much worse surgery, and had expected her to slice me open under the arm and take out all the lymph nodes (but so glad she didn't). She said that there was no point in trying to take out most or all of them  - because we need lymph nodes to fight infection, etc. I was glad to hear that. Bye the way, my surgeon operates out of a private clinic that *cooperates* with the big public (University) hospital, but is independent from it. I was happy to have my surgery in the private clinic because this surgeon is highly reputed, and I wanted a bit less of a cattle-barn atmosphere which is how my previous surgery (hysterectomy) at the University hospital felt.

There is a drain in the incision/scar and it is draining. I was earlier told that I'd be going home tomorrow (Thursday) but now it seems unlikely that I will go home before Friday, because they won't send me home with a drain. (Is that different from US practises ? I seem to remember hearing about people being sent home with a drain). Anyhow, I told the nurses that I was happy to stay here if I could make them laugh. (Somewhat of a challenge...)

Also -- something they did that I found rather touching - a nurse asked if I had a prosthesis yet -- I didn't, so she called and arranged for the prosthesis lady to come and bring me one tomorrow. The surgeon (a lovely lady surgeon) said she wanted me to have the prothesis in hand before she showed me the scar (!) and she wanted to show me the scar before I went home, because she didn't want me to have to face seeing it for the first time alone (!). Is that amazing or what ?

alicki

Hello,

Truly amazing. Can I ask where you were operated? I'm not in US but in Switzerland and it's always good to have addresses of clinics and doctors for my friends who live in France but work in Switzerland.

I'm so glad the surgery went well. I only had a breast reduction so I can't relate to your experience, but the reason they are not letting you home with drains is properly because of the risks of infection.

I note that you also had a hysterectomy before. It would seem that there's some kind of bizarre link between hysterectomies and breast problems at various severe or less degrees.

Don't go home until you are fine to do so. Normally, they should keep you for a few days more if you need to rest a little longer.

I admire your courage, being in France as an expat and having to deal with Cancer in a foreign culture and language. You ARE one brave person.

Anyways, all my best wishes for a swift recovery and the best pathology report possible.

On pathology report: (this is from my experience in Switzerland): not only get a copy of it BUT also make sure that they have ANALYSED ALL the breast material they removed. I had to INSIST that they do that to mine but then again, I had inflammation  not cancer but was worried sick about IBC because I had had a lot of the symptomes but nothing was showing up in the skin biopsies . (still hoping they didn't mess up...but I did make them give me a PET scan + MRIs before the operation and they were clear!

Enough of me, look after yourself and keep us posted.

Best 

Alicki