Chemo withdrawn as not responding

Karen3 · December 2009

Hi everyone

For those of you who have been following my story.......

I have been having neoadjuvant chemotherapy and have had 2 X cyclophosphamide and epirubicin. An MRI showed that there was nil affect on the tumour and so they switched me to Docetaxel which had no affect after one cycle and then 1 X cycle of Taxol. An MRI last Wednesday has shown nil affect again and so my Oncologist has stopped my chemotherapy treatment after only 4 cycles (I am only half way through my treatment).

I asked why, since triple negative cancer is said to respond well to chemo, my cancer seems to be chemo resistent. He said that some cancers mutate and become immune to chemo and that to continue with the treatment would be pointless and put me at greater risk. I haven't slept at all last night because, as I understand it, they ONLY have chemo to treat triple negatives. So, what happens when a triple negative is chemo resistent??

The Oncologist has booked me in with the sugery team today because they need to get the tumour out ASAP. I am still waiting for my results from the BRCA test but it looks like I'll have to make a decision about surgery before the test results are through. The Oncologist thinks that, because of family history, he strongly suspects a genetic link - even if I prove to be BRCA negative. With this in mind he wants me to consider more radical surgery being both breast removed and the nodes under my right arm removed completly. If I am BRCA + then my ovaries should also be removed at a later date.

I just wondered if any of you could help here with suggestions. I am seeing the surgery team this afternoon so need to make decisons quickly but surgery should be at some point soon after Christmas.I have also been told that there will be no follow up treatment after surgery - apart from an annual meeting focused on how I feel. I will not have mammograms (because I will not have breasts) or MRI's. My Oncologist said that MRI's would not give me a better prognosis because there is nothing they could do if they found anything. He said for me to go away, have the surgery and live my life as normally as possible and just 'hope'.

Ladies, I can't sleep and life feels full of uncertainties once again.....

cindoe · December 2009

Karen,

Hugs to you! I am praying the decisons will come easily for you and your medical team. I haven't read all your posts, but have you gotten a second or third opinion? Can you get in to see another oncologist?

Cyn

Enjoyful · December 2009

Dear Karen,

No wonder you didn't sleep! That's a lot to take in. It sounds like you have some time between now and surgery, so perhaps you could seek a second opinion. I got four opinions after my recurrence and they were all very different. After surgery, there may be drug trials out there that are a good fit for you. Hang in there!

Hugs,

E

cindoe · December 2009

bumping this up

Nanalinda · December 2009

Get a second opinion and fight, fight, fight!!! Don't let the Dr's make this decision for you. There are many more chemo's left to try. Best of luck to you. Linda

konakat · December 2009

I'm not triple negative but I just have to speak up and say I agree with Nanalinda. It sounds like your onc isn't giving the chemo a chance to work. And there are lots of more chemos to try. For example, both Nanalinda (triple neg) and I are on Gemzar and it is working for us. Definitely get another opinion and a new treatment plan. Have the surgery and then ask the surgeon send you to a different oncologist -- one that has a brain and some compassion! Hugs,

Elizabeth

rinna40 · December 2009

Karen, I had six rounds of chemo, 3fec and 3 Docetaxol and am also TN. Is there a reason that you didn't have surgery before chemo? I did, and then did the chemo, but because I had the tumor removed first, there were no tests to see if the chemo was working. I agree with the ladies above. See if you can be referred to a new Onc, or ask yours about other possible treatments.

Huggs to you

Rinna

Karen3 · December 2009

Hi all

Thanks so much for all your posts - rinna40 I was having chemo first because I was told that because they only have chemo to treat triple negative they have to 'get it right'. If they removed the tumour first, they wouldn't be able to monitor how the cancer is responding (or not responding in my case). I have been having MRI's every 4 weeks to check response. They have given me four different combos of chemo now and I have been told that for reasons of toxic impact on the body, they will not at the moment offer any alternative chemo.

Anyway, my meeting with the surgeon went really well yesterday - he was optimisic but also truthful which I did appreciate. Basically he disagreed with the Oncologist! He said my biggest danger at the moment (as chemo offered has not worked) is not the tumour but possible mets. He said no amount of radical surgery would remove that threat now and if there were rogue cancer cells in my blood stream then it would be putting me through needless surgery when I could be 'enjoying life'. I understood what he meant and to be honest I thought the same thing before the meeting. He suggested to have a lumpectomy and then wait say six months. This would give me chance to recover etc and I suppose any mets would happen in that time? The situation will then be reevaluated and more radical surgery will always be an option if I want. The possibility of allowing mets to take hold worried me and he agreed that there is more chemo options they could give me and that the chemo I have had so far is only the 'standard treatment'. BUT he feels that my body needs time to recover right now however further chemo may be an option after lumpectomy and rads. I asked him about Parp inhibitots etc and he said he would be happy to discuss this later after surgery.

I have been happy with all this and I slept well last night. I do understand his reluctance to put me through major surgery at the moment when right now mets is my greatest threat. I can always have the radical surgery later. I feel happier with lumpectomy, rads and the possibility of further chemo later (but a different type) when I have chance to recover from the last barrage of chemo treatment.

I would really welcome your opinions about this..... The surgeon has given me a different perspective on the situation - he seems to have suggested an immediate way forward which at the same time still leaves all the options open. Also, I want to get this tumour out as soons as possible now. I've had enough of it and it's also painful! Thanks so much for your help so far X.

Luah · December 2009

Well, only you can make the decision that's best for you, but for what it's worth, your surgeon's perspective sounds reasonable to me. In fact, your future treatment plan would be exactly like many of us here, including mine - except that you have the foreknowledge that the standard chemo treatments didn't work and you can try something else. It's too bad the tumour wasn't responding, but the silver lining is that you know that and can make appropriate plans.

I'm wondering how you know your node status without surgery? Did you have a SNB done? The clear nodes is a good prognosticator vis a vis distant recurrence (mets), but of course there are no guarantees, and sometimes women with clear nodes have the disease show up elsewhere. Have you had any scans done (PET, CT, bone, abdominal, chest xray)?

Given equivalent survival stats of lump/rads vs Mx, it seems reasonable to go for the lump, and if the margins aren't clear or the BRCA testing turns up +, go back for Mx or prophy double MX. Just my opinion.

ElaineD · December 2009

Karen, up o a point, your onc is quite correct. Some people simply don't respond to chemo-it's extra difficult for you as a triple negative, when it is your main line of treatment. But he has a point-sometimes tumours aren't chemo sensitive.

I notice you are in England (as am I), and you mentioned PARP. Again I have to give you some bad news there. At the moment, PARP inhibitors are not available for triple neg. They are at phase 2 trial stage, and are only being offered to BRCA1+2, and ovarian cancers. I recently participated in the trial, and asked the trial co-ordinator if there was any chance of the study being widened to include triple neg (a triple neg friend had asked me)-to which he replied, "no", as the next group to be included will be prostate cancer sufferers. I'm sure your surgeon was only trying to help by saying he would discuss this-but he is not really the person who will have sufficient knowledge on this. Even your onc may not be too knowledgeable-mine certainy wasn't. I did all the investigation, and pushed him to get me on the trial. Of course, if it transpires that you are BRCA+, then you will very likley be welcomed onto the trial with open arms, as they are struggling to find suitable candidates. Good luck-hope the surgery will help.

Karen3 · December 2009

Thanks everyone for your comments. Elaine - thanks too about the tip regarding PARP. I had bloods taken for testing for BRCA 1 and 2 on 2nd Nov and am still waiting for the results. I was told that it will be early January now so if I am positive for the BRCA gene, I will follow this up.

Luah, yes I had my seninal node biopsy in September and they removed three nodes. I had my op just three days befor chemo! As you can see below, I was node negative. But, I was told that this is no guarantee as cancer cells can eneter the blood stream via the blood supply around the tumour. They 'strongly suspected' mets in September and I had a bone scan and CT scan but they were clear. But even here I was told that these tests do not show up early mets because they are too small to detect. I think you are right about the positive features of this. Because I had chemo beforehand, I know the cancer has not responded and I can start from an informed position. This would not be available to others who have surgery first. Node negative and no detectable mets in September are good features.

I think lumpectomy and rads seems the way to go for now.

vision2020 · December 2009

Im so sorry for what you are going through. I had breast cancer 5yrs ago not tripple neg but I do have a friend that is,She has tryed several chemos and the cancer still growing now she is on a clinical trial she had her 3rd treatment today she is braca pos and she had had both of her breast removed. Her Dr has not given up on her .I think for you I would seek out another Dr. For God sake this is your life we are talking about... Good luck and God bless

yellow · December 2009

Dear Karen3,

I would strongly suggest to see another Dr, but if you cant im also triple negative and told that only surgery chemo and radiation for us. what about radiation? also have you looked into different methods of treatment. Or have they given you a different chemo to see if that works, its important to have a dr. who does clinical trials have you asked about that? Im being treated at City of Hope in Duarte, California and its the best place. Im 32 my tumor took over my breast but chemo took care of it. If you want ill give you the Drs name and numbers get you in, let me know. he does active studies. Good luck and pls dont give up!

slanderson · December 2009

Yes, what about the studies they are doing with the parp inhibitor drug? Isn't that for triple negative bc? I believe it is given in conjuction with chemo to make the cancer cells less able to repair themselves while chemo is working on them.

Shannon

ElaineD · December 2009

Girls, Karen lives in England-see my post above. PARP is not yet being used for triple neg patients, so is not an option for her. Nor, I imagine is travelling to the States for treatmentt-we have some excellent oncs here you know!

Nan56143 · December 2009

Dear Karen3,

I had posted this link and the entire post in the Alternative forum, but please take a look at it before you have surgery, and you might want to give a copy of it to your surgeon.Hopefully he/she will be open minded to read what his/her peers are writing/saying.

When my daughter had an ultrasound in May of 2007, the radiologist's reading was a "fibroadenoma cyst". After a screwed up surgery, where the surgeon cut in to the "cyst", and did not get clean margins, he discovered it was a malignant tumor. The dx was TNBC. After reading this article in the December issue of Life Extension magazine, I am determined to let every woman/person I know, that possibly what their surgeons are doing is causing metastasis. This article has 102 references, and if a surgeon does not follow these procedures/protocol, then if it was me, I would find a surgeon who shared my philosophy on "first do no harm". How I wish for my daughter Lori's sake, that we could go back in time, but sadly we cannot.

http://www.lef.org/magazine/mag2009/dec2009_Preventing-Surgery-Induced-Cancer-Metastasis_01.htm

This is the last paragraph in this article...

As this article was going to press, a dedicated team of clinical oncologists and researchers are preparing a meticulous report on the optimal doses of nutrients and drugs that a cancer patient should consider during the pre- and post-operative period. You can obtain a free copy of this report by logging on to our Cancer Surgery Special Report or calling 1-800-841-5433.

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33skidoo · December 2009

You might consider having the tumor removed at biopsy re-tested by another lab. Sometimes they get it wrong. Or, you might see about getting another (new) biopsy and having that tested to see if it has mutated into something treatable by other means,

PS73 · December 2009

IIm so sorry to hear this. I hate this friggin disease!!! Why did your dr rec taking the entire fat pad out when you've already done the snb?

You have lots of good clinical info at your hands. I would like to add that in the meantime, if you can, try and relax. Iknow stress was a factor for my BC. Try to get your immunity up and strong to prepare for battle. There is lots of information regarding food and nutrition posted all over these boards. What is your regimen or therapy thread is very informative in terms of supplements and diet. I know alternative medical debates can get heated and I find that those stress me out too much to get involved in so its all up to the individual but I will say that I finished chemo and am now ready to do vitamin c drips to destroy any rogues left over. Here's an abstract on vitamin c drips. http://www.liebertonline.com/doi/abs/10.1089/act.2009.15107 I think it's important how its noted in the abstract that the higher dosage of vitamin c was where there was benefit as to destroy the cancer.

you have lots of advice from a lot of women going thru or who have been thru this so hang in there - its scary and it sucks but don't give up - never, ever give up!!

Karen3 · December 2009

Hi all - thanks again for your comments. PS73 and Nan - thanks for the articles you have posted. Nan it's interesting that you have mentioned the hazards of surgery and possible mets. I was thinking on these lines myself - surgery is obviously invasive and may encourage the tumour cells to enter the blood steam and result in mets. My goodness, all this seems a hazardous journey!

Yellow and vision2020- I am in England and under the NHS it is difficult to change doctors / oncologists. In many ways I do have confidence in my Breast Surgeon though - he is the leading breast surgeon in the area and does come highly recommended.

Thanks so much for all your comments. I have to go back in to hospital on Monday to discuss what I want - the surgeon is leaving it up to me. I have to say that I really feel that I want this tumour out now.....it's getting more painful by the day.

CoolBreeze · December 2009

IKaren, as I told you, if you can get to Northern CA and find a trial here, you have a place to stay.

I don't think she's gettting good treatment at all. I am sure there are wonderful doctors in England but your oncologist isn't one of them. I would find another immediately.

My tumor was painful too - I can understand wanting it out. On the other hand - you'll be taking away and important diagnostic feature for triple negs.

Can you get a 2nd opinion with another oncologist before you have surgery?

Karen3 · December 2009

Hi Ann

I was told by the Breast Surgeon that it is unwise to subject the body to more than 4 types of chemos at a time; to keep experimenting with different types could he said do more harm than good at this stage. Also, the longer the tumour is in situ, the more danger I am in of possible spread (given that chemo is not working). I have done some research and it appears that there is a spectrum of triple neg tumours and most respond well to chemo. But there is a subset, often involving the BRCA 1 gene which are chemo resistent because of gene mutations etc. They think I am BRCA 1 + so maybe that is the case with me. If I do prove to be BRCA + then there is a trial in England with PARP inhibitors (see post above) which I will enquire about.

It's so difficult to know what to do Ann - I know that removal of the tumour takes away the diagnostic feature BUT if the surgeon thinks leaving it in now (given that I can't have any more chemo for a while as my body needs to recover after four different types) puts me a greater risk, then maybe I should have it removed. It was so painful all of yesterday.

XX.

Chemo withdrawn as not responding

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