Adding Carbo onto ACT…what can I expect?

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Allydp
Allydp Member Posts: 520
edited June 2014 in Chemotherapy - Before, During, and After

I'm triple negative and recently learned I'm BRCA2+. In light of this combo and recent studies, my onc is recommending adding low dose Carbo along with the weekly Taxol. I'm all for it, but would love to know what I'm in for in terms of side effects. She said I might be more uncomfortable, but she didn't go too much into detail. She mentioned possibly more neuropathy and fatigue. She also mentioned that my white count could drop and possibly needing Neupogen shots. 

Has anyone been on this regimen? What can I expect? Not sure if it means anything, but I'm heading into my 3rd round of AC and doing very well. 

Thanks in advance. 

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  • BikerLee
    BikerLee Member Posts: 355
    edited March 2014

    i had carbo with my taxol - i was in a clinical trial that also included an experimental drug during this stage.

    yeah - the carbo are a bit harder than the taxol only weeks, and your blood counts will drop down a bit further, but i really did find it quite doable.

    and yeah - i've read that research, and it's pretty darn convincing, i've got to say.

    so... that leads me to my piece of advice - GLUTAMINE - ask about adding this as a supplement to your routine during the 12 weeks of carbo...  it's been shown to reduce neuropathy, and i adhered to it carefully during all 14 weeks ( i had two delays)...  i had very little neuropathy...  i don't know if glutamine helped that happen, but the stuff i've read (in the scientific literature) suggests it can really help.

    so - if your care team approves...

    you can buy this as a powder at most health food stores. you take a rounded spoonful - swirl it in a small cup of water... and drink up. it really doesn't taste like much, so it's easy to tolerate.  you do this three times each day for the first 3 days after each cycle.  so, infusion monday.... glutamine tues, wed, and thurs.

    i hope that helps. 

    was ac very hard for you?

    i did have neupogen a bunch of times... but the experimental drug i was on added to the drop in blood counts... i knew others who did not require the nuepogen.  if you're currently getting neulasta, which i had with ac... well, i found neupogen much much easier.

    by the way, if you have to get those shots, they sting a lot less when the fluid is allowed to come up to room temperature.... had a bunch that HURT .... and then had a difference nurse say  ... let's wait a few minutes before i administer this... why - i asked... oh - she said - hurts loads less when it's room temp.  ooooohhhhh.... and that little tidbit made all the subsequent shots far less sucky.

    good luck good luck good luck!!!!!

    ps - edited to add - nausea was MUCH LESS with taxol carbo than with AC... and by much less... I MEAN SOOOOOO MUCH LESS.. don't know if you;re struggling with that.  

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  • Allydp
    Allydp Member Posts: 520
    edited March 2014

    Thanks so much, Biker Lee. I've done well on the AC so far, so I'm hoping it's a good indicator of things to come. So far no nausea, which I'm very relieved about. I will definitely check out the Glutamine. That neuropathy sounds like no fun, so anything I can do to decrease it. Also glad to hear the neupogen isn't too bad aside from maybe some injection burning. If that's the worst, I can handle that. :)

    Thank you again!

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  • Lettinggo
    Lettinggo Member Posts: 52
    edited March 2014

    Hi BikerLee, thank you for sharing the tip with Glutamine.  I am having carbo and taxol too just started 2 weeks ago will be doing it weekly.  So i will start on the glutamine right away.  Question: do we just need to do it for the 3 days after each infusion? and the dosage is not the 1 tsp per day but 3 times a day and each time 1tsp?  Thank you again!

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  • SpecialK
    SpecialK Member Posts: 16,486
    edited March 2014

    lettinggo - 30g daily - 10g equals a teaspoon.  I dissolved the teaspoon in a drink 3 times daily.  I do not recommend mixing it with food - it will taste chalky.  I took it for a week following each infusion.  Make sure you have your oncologist's permission before using any OTC stuff.  I also took 1500mg of Acetyl L-Carnitine and 100mg of B6 with the L-Glutamine.

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  • Allydp
    Allydp Member Posts: 520
    edited March 2014

    Lettinggo, how's the Carbo/Taxol going? How do you feel on it? 

    I asked my onc about Glutamine and she wants me to wait to see if neuropathy is a problem for me first. I'm not sure I agree and plan to ask her again before I finish AC. 

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  • SpecialK
    SpecialK Member Posts: 16,486
    edited March 2014

    IMHO - if the idea is to prevent neuropathy with L-Glutamine waiting until you have problems to try to prevent it is not very logical.

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  • Allydp
    Allydp Member Posts: 520
    edited March 2014

    SpecialK, I totally agree with you. I'm going to push the issue with her. I'd love to avoid/prevent it altogether! 

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  • SpecialK
    SpecialK Member Posts: 16,486
    edited March 2014

    Some who develop neuropathy have it at a permanent and debilitating level - that would be my argument since there is no way to know in advance who this will affect.  There is also no guarantee that the supplements will help -  I had mild neuropathy even though I took these supplements, with my onc's permission, but it did resolve within 3-4 months after the end of chemo.  I had fingertip and tongue tingling and numbness that resolved prior to each infusion but the longer lasting issues were the soles of my feet.  I will never know if it would have been worse without supplementation, and I know others who were not as fortunate. Good luck!

    Just wanted to add - the C in my TCH was carboplatin.  I developed ringing in my ears after the first dose, but mine was not low dose.  This appears to be a permanent issue for me.

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  • Allydp
    Allydp Member Posts: 520
    edited March 2014

    SimpleK, I'm so sorry the ringing seems to be permanent. I'm glad to hear the neuropathy resolved, however. 

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  • Lettinggo
    Lettinggo Member Posts: 52
    edited March 2014

    SpecialK, thank you for the explanation.  my MO approved the Glutamine and i am still waiting on the approval for B complex.  i asked for the Vitamin B complex since they told me my red blood count and hemoglobin is low and that they are considering a blood transfusion if the hemo stays at 7.7 level.  Any tips on improving red blood cell counts?  Since i am taking taxol weekly i suppose i will need to take the Glutamine all the time since you are taking it the whole week after the infusion?  Allydp, thank for asking, i am feeling tired but no nausea thank God.  Thank you again.

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  • Allydp
    Allydp Member Posts: 520
    edited March 2014

    Lettinggo, so glad you're doing well and have no nausea! I hope you get some tips on improving your red blood count and don't need a transfusion. Wishing you all the best.

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  • SpecialK
    SpecialK Member Posts: 16,486
    edited April 2014

    letting - eating protein/iron rich foods may help improve your hemoglobin, such as beef, salmon, chicken, eggs, leafy greens, fortified cereals, etc. When I was diagnosed I worked in Transfusion Services in the hospital.  If you need a transfusion and want some details about what that entails, let me know with a PM - I will send you some info.  I'm a former NOVA girl - just saw that you are in Centreville - used to live in Springfield, my son the fireman lives in Loudon County.

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