should I do chemo again or not - please help??

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kcrowe
kcrowe Member Posts: 9
edited June 2014 in IBC (Inflammatory Breast Cancer)

Hello Peeps - i am new to this forum but not new to breast cancer.  I am 36 years old and have been diagnosed with Inflammatory Breast cancer stage 3b.  I battled breast cancer 4 years ago and had lumpectome and lymph node removal followed by 6 months chemotherapy and radiotherapy and tomoxifen.  Then had 4 years ok and then diagnosed with Inflammatory breast cancer in March this year.

When I had chemo before I had a very rough time when my kids were only 1 and 3 years old.  Was sooooo sick nearly stopped my chemo because they could not control with meds and then Anaphilactic shock to Docetaxel and then Septicemia from Docetaxel.  So nearly died a couple of times from chemo.

Have just had my second chemo this time with Paclitaxel and had anaphilactic shock again and now they want to use Abraxane which is still a paclitaxel drug.

I am terrified of chemo and having done it before and had such horrid reactions to it - I fear I may die of chemo.  My kids are now 5 and 7 and I can not bring myself to go through and try it and see approch to chemo - please help - I am thinking of just not doing chemo and trying everything else plus diet change etc in  the hope that I can stay alive.

Maybe you can help with your opinions as my brain is fryed.

Love kath

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  • LuvRVing
    LuvRVing Member Posts: 4,516
    edited April 2011

    Kath, 

    My understanding of Abraxane is that it is mixed with an albumin instead of a solvent.  Because of the different compound, there is much less risk of allergic reactions.  They typically don't administer steroids or benedryl in advance because the allergy risk is so low.  I am diabetic and will be discussing Abraxane as the alternative to Taxol or Taxotere to avoid the steroids. 

    Read up on Abraxane and maybe the information will help you have a good discussion with your onco before you undergo another treatment.    The following link will get you started:

    http://www.medscape.com/viewarticle/465645

    I am not a chemo advocate, and I actually passed on chemo last July even though I had an Oncotype score of 50.  Well, here I am again and now I have no choice...it's a matter of life or death for me.  I am guessing that with an IBC recurrence, you are in a similar position.  With 8 positive nodes, I don't see how you can avoid chemo.  So take a few days to breathe, do your homework on Abraxane, and talk to your onco.  These are difficult decisions.  I hope you come to the one that gives you the greatest peace of mind.

    Hugs,

    Michelle

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  • kcrowe
    kcrowe Member Posts: 9
    edited April 2011

    Hello Lovely Thanks so much for your help and advice - I have done tons of research on Abraxane and my only problem is that I have now had Anaphilactic shock to both docetaxel and paxitaxel and both have different solvents in them.  So wither I am hypersensitive to two different solvents or the redeaming factor which is the paclitaxel which is in all 3 chemo's - docetaxel, paclitaxel and Abraxane and if that is the case then I could die of an iphilactic shock on wednesday which is just freaking me out.

    So scared to do it but do not know what choice I have.  I am massivley positive that I will get through this cancer - Have an inner knowledge that it will be ok but just feel that if I do chemo I will die - does that sound weird?

    It is such a hard decision and you are a very brave woman to pass on chemo - I feel doomed if I do and doomed if I don't

    Biggest love and thanks so much for your help - it is lovely to speak with someone in a similar position.  Why did you apss on chemo (I assume much the same as me) and where you at now?

    Biggest love

    Kath

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  • anonymice
    anonymice Member Posts: 532
    edited May 2011

    Kath,

    You should have the chemo.  You have IBC - like me - and it will kill you very quickly without it.  As people diagnosed with IBC, we have automatic social security disability eligibility.  That means that without treatment, your life expectancy is less than a year.

    They know about your reactions and I have no doubt are prepared for anaphylactic shock.  I don't mean to sound harsh in the least and I feel deeply for you and send you all my best wishes and hugs.  But, I do mean to scare you, because you must fight to be here for your kids and I believe that chemo is the way to do that based on what I've learned about IBC.  I just had 7 months of chemo for IBC - Adriamycin, Cytoxan, and then Taxol - and my scans show NED.   I have a good chance at staying that way, but at the very least I've been given more time and who knows what advances they might come up with in the meantime - things are moving fast now and I believe we're going to start seeing big changes in those IBC stats in the near future.  Despite my NED though, I am having a double mx next week, followed by 6 weeks of radiation because IBC is bad, bad news. 

    You can always stop chemo.  But there's only one chance to beat the bastard, and it is now.   

     

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  • HerSister
    HerSister Member Posts: 51
    edited May 2011

    Hi Kath,

    First, I'd like to say that I am sorry that life has dealt you this blow.  Second, I'd like to state my disclaimer - I am not in the position that you & most everyone here is.  I am here because of a loved one that has IBC.  So, I don't know if my input will mean as much to you, but I really couldn't bear to read your post w/o putting my 2 cents in.

    In your post - I see your answer already there - YES...  The way I see it here, based on your post - - you need to try every possible thing!  The yes that I see in your post can by found in your own words: "my kids"!

    With my 'disclaimer' in mind, please note that I do speak from the experience of being a mom of a young child and I also speak from the experience of having lost both parents young (one at 8 years old & the last one when I was 23).

    I love Pam's last paragraph - says everything so well.

    Now that I've re-read your post, I see that you were already scheduled to start your treatments.  I do hope you will post soon & let us know how you are doing.

    Big hugs, Kath! 

    Marianne 

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  • lorieg
    lorieg Member Posts: 802
    edited May 2011

    Hi Kath,

    I am sorry I am just now seeing this, but YES, you have to have chemo!  You will absolutely die without it.  IBC is just too aggressive.  There are many chemo options out there, however, so certainly they can find something for you.  Although I tolerated it, I did not have a good clinical response to A/C, Taxol, Herceptin soI was put on Xeloda and Tykerb which were very tolerable for me, and I ended up with a decent response. 

     You are too young.  Don't give up on chemo!! 

    Also you may want to consider an opinion and at major cancer center like MDA, Fox Chase, or Sloan Kettering.

    Best of luck and lhugs,

    Lori

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  • Tundra
    Tundra Member Posts: 136
    edited May 2011

    Hi there Kath,

    So very sorry to hear that you're going through this a second time and that you're now dealing with IBC.

    I'm obviously not a Doctor so I can't give you medical advice but I will speak from my own experience of having IBC and being in treament for it.

    First things first: IBC patients don't get the option of deciding whether or not to have chemo. Obviously you can always choose not to have treatment. But... chemo is necessary for IBC patients as the first and most important step in your treatment.

    This is for two reasons : 1) if you are IBC you are not operable until you have chemo, and 2) IBC is considered "locally advanced" -- i.e. potentially able to go into the rest of your system... so you need the chemo to lock things down and keep them from going elsewhere.

    So as some other have said: you need the chemo to survive IBC -- it's step 1.

    That said... I have something that I hope will provide you with some comfort.

    My first type of chemo was Taxol. And I had allergied reactions to it so they moved me to Abraxene. There's no solvent in Abraxene -- that's the idea behind giving it to people who are sensitive to Taxol. There are also no pre-meds like Benadril. With Abraxene it is wrapped in a fat  molecule... so no solvent for you to react to. 

    Everyone has their own reaction to dif kinds of chemo. Some people find one kind hard and another easy, while with others it's the reverse. But I found Abraxene to be an easy chemo to handle. Maybe you will too?

    One thing in parting.... are people on your team being clear with you about the above? They should be explaining these things. 

    I am wishing you much strength and peace in all of this and all the best with whatever you choose.

    xo

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