Introduction/Mother's UPSC Recurrence

I'm so sorry for what has happened to your mother.  You should know that your posting your mother's story is useful to others who come here, too.  

Two things that I would recommend.  Consider having your mother ice her hands and feet during chemo infusions, to reduce the risk of developing neuropathy.  And the other is that she should get tested for her2neu status, because she might benefit from the addition of Herceptin to the chemo, if she is her2neu positive.  They can do the test on the original specimen from her surgery.

Welcome jjtrim. I'm glad you joined and sorry that it is necessary. There are many stage 4 women on this board that have beat the odds. There is no reason that your Mom can't belong to that group of warriors! Chemo is not easy, but it is doable. I'm so glad you are there to support her. She is lucky to have you. Please come back and let us know how she is doing. And, don't hesitate to ask us anything. Most likely, someone has been there/done that!

Love and Hugs,

Cindi

jjtrim said:

cold therapy

Hi zsazsa1,

Thank you for your reply. I bought my mom some special cold therapy booties to put on her feet and hands during the Taxol, and will bring a cooler to keep the replacement packs cold - since she has a 5 hour infusion and I'm not sure how much of that is taxol.  What's funny (though not so haha) is that when I called the infusion/chemo nurse she stated that she had never heard of using cold therapy for taxol, only for Doxil.  I told her that I would print out some reputable research studies (and there are many) on the benefits of using cold therapy on peripheral neuropathy with taxol so she could share with her patients. I'm disheartened that the chemo nurse was not already aware.  When the Kaiser pharmacist called to go over my mom's other chemo-related meds (zofran, dexamethasone, etc.), I also took the liberty of asking her about cryotherapy with taxol and she ALSO stated that she was unclear whether or not taxol was associated with peripheral neuropathy.  As if I don't feel crazy enough as it is, I'm feeling like I'm really going to have to advocate for my mom in this setting.  I have read so many accounts of the cold packs helping with neurpoathy.

I'm not familiar with the her2neu, but I have heard of Herceptin, possibly even from your previous posts.  I'm not sure how to go about getting her specimen tested.  I've looked into the FoundationONe genomic profiling, but again am unclear on how to initiate this process.  Is this something you initiate with the oncologist?  Does the lab keep the original specimen for this sort of thing?

I'm going to continue to do some research.  Yet again, you all are an immense wealth of knowledge and support and I thank you.

Best,

Jenny

 

If anyone is interested, these are the cold therapy socks we are using: 

https://www.amazon.com/NatraCure-Cold-Therapy-Socks-treatment/dp/B003L4WOKG/ref=asc_df_B003L4WOKG/?tag=hyprod-20&linkCode=df0&hvadid=242003539383&hvpos=1o3&hvnetw=g&hvrand=5727501367904018782&hvpone=&hvptwo=&hvqmt=&hvdev=c&hvdvcmdl=&hvlocint=&hvlocphy=1013962&hvtargid=pla-525275327490&psc=1

What a wonderful daughter you are. We all need the support of our families, or friends and she is very lucky to have you advocating for her. Ask any questions that you might have as so many here have been in the same boat and we learn so much from eachother, even just a word of support can be so helpful. I used cold mittens and booties and they worked well for me, but I agree, it is not just a standard protocol. What does one have to lose? I have come to think that icing the extremities is not important to some teams, even though there are studies that say it is effective. Even if it helps the majority to ward off the worst of neroupathy, why not do it? The long term side effects of chemo and radiation are so real. Good luck to your mother and let us know how she (and you) are doing. 

xxoo

Denise 

You ask the oncologist about her2neu testing - it's not as big a deal as Foundation ONe.  My insurance paid for the her2neu testing, (but not Foundation ONe) and now that it's NCCN guidelines, your mother's should too.  If the tumor is her2neu positive, then Herceptin will likely be of benefit and will be added to the chemo.

My experience with my oncologist was that I had to do an end run around her and the surgeon to get the her2neu testing done, to receive it.  Also, no one told me ANYTHING about icing my hands and feet - I found out about it on this board.  I had 5 rounds of full dose carbo/taxol, and then began to get some neuropathy in my foot, so decided to forgo the taxol for the final round.  What really scared me was that one night after the 5th round, I had several sudden, excruciating stabbing pains in my big toe, as if someone had stabbed me in the toe with an ice pick repeatedly.  I was afraid that if I had another round of Taxol, it would become permanent.  My last round of Carbo only was about 6 weeks ago, and I now have no pain in my feet, and the numbness seems to be receding.

The way the icing works - they do some prechemo infusions - I had 3, 15 minutes each.  I began icing my hands and feet about 15 minutes before the taxol, which takes 3 hours.  Then they did the carboplatin, which took 30 minutes, then the Herceptin, which took 90 minutes the first round, then 30 minutes each time thereafter.  I tried to ice my hands and feet for as long as I could, usually until all the infusions were finished.  If I'd been doing cold packs, I would have continued icing on the way home!

Encourage your mother to drink a TON of water, from about an hour before the infusions begin, right on through them, and all day (and night) for the next couple of days thereafter, to wash the chemo out of the kidneys and bladder.  The first time I did not, and I had kidney and bladder pain, as if the chemo had "burned" my kidneys and bladder.  I found that the first round was the hardest.  After that, my body seemed to tolerate the chemo better.

Tell her to treat her nausea with compazine, and if necessary, ondansetron, before it gets so bad that she cannot drink.  That was another mistake I made.

Please tell her that overall, the chemo is really not that bad.  Yeah, she's gonna lose her hair.  But most of the women on this board didn't have a lot of misery with the chemo.  I found that I was pretty good for the second and third weeks of each round.  And most women on this board were helped by the carbo/taxol.