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Introduction/Mother's UPSC Recurrence

jjtrim's picture
jjtrim
Posts: 16
Joined: Mar 2019







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Hello everyone,

 

I have found so much comfort and inspiration in your stories, I feel it’s time to reach out. It’s been hard to get the courage to put it all in writing because it makes it feel so much more real.

 

My mother is currently experiencing a recurrence from her stage 1a UPSC.  She has been diagnosed with widespread metastatic disease with multiple lymph node involvement from her cervix to her pleural cavity.  She unfortunately also has mets to her peritoneum and omentum. It is my understanding that she is still referred to a “stage1a” now “with recurrence and metastatic disease” which is essentially a stage IV.  She will begin carbo/taxol on 4/11, 3 sessions at 3 week intervals before repeat PET/CA125 to see how the cancer is responding.  

 

I’m devastated.  At the time of her initial surgery and staging, the cancer was found to be confined to an endometrial polyp.  Everything I had researched led me to believe that chemo and radiation are recommended for even stage 1a patients because UPSC is such an aggressive, high-grade cancer.  Though since her cancer was confined to an endometrial polyp, chemo and radiation were not recommended. I repeatedly asked the oncologist and she assured me adjuvant therapy was not necessary because of the “confined to a polyp” status.  My mother was so relieved she didn’t have to go through the chemo, but I was extremely uneasy with the decision.  Now, 14 months later, we are looking at a stage 4. I am terrified and angry and heartbroken and everything in between.

 

My understanding is that with metastatic disease, we are now focused on controlling the progression of the disease rather than “curing” or eradicating it.  I know we can hope for extended periods of remission, but the cancer will always likely to return.  I’m hopeful that we can attack the lymph nodes and get everything under control enough for her to be considered for HIPEC for the peritoneal mets.  That may be wishful thinking on my part, but the idea of surgical removal is so much more appealing as I know the cancer just continues to mutate and become resistant to the drugs.

 

Right now we are gearing up for the carbo/taxol, which will begin in 6 days.  Making us wait for 2 weeks to start chemo was cruel.  I’m just imagining it spreading all this time. She is with Kaiser and that was as soon as we could get in.  I’m hoping to explore other options as we progress including immunotherapy, metoformin, whatever we can throw at this beast to keep my mom here with us as long as possible.  My boys need their grandmother.

 

You all are warriors.  I visited this site frequently when my mother was first diagnosed.  You all gave me so much information which in turn helped me advocate for my mother throughout this process.  Since news of the recurrence I have spent countless hours reading your stories.  I am grateful for everything you’ve shared and hope you know that by sharing your stories you are offering comfort to strangers who are scared, sad and at times hopeless. I will continue to update in the hopes that my mom’s story can provide the same for someone else.

JT

janaes
Posts: 760
Joined: May 2016

Im so sorry you and your mother are going through this reacurance.  Im sorry you had the experience you had with your mothers first oncologist. Your feelings are very understandable. I remember my original doctor just wanted me to do bracytherapy. No chemo. Other doctors told me otherwise. I had to have a tumor board of a bunch of doctors look at my cancer and then talk to one more doctor and decided to do chemo.

Take your time to process your feelings

Im glad your going forward and doing what needs to be done for your daughter. Youve got a plan and thats great. There are ladys one this site who are fighting a reacurance as well. Im sure they will be here to chime in.

Im glad you are finding comfort in the site. It helped me so much.

zsazsa1
Posts: 324
Joined: Oct 2018

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.

jjtrim's picture
jjtrim
Posts: 16
Joined: Mar 2019

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

BluebirdOne's picture
BluebirdOne
Posts: 195
Joined: Jul 2018

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 

 

EZLiving66's picture
EZLiving66
Posts: 1345
Joined: Oct 2015

I am so sorry your mom and you are having to go through this. I was Stage II, UPSC and my doctor recommended chemo because of it being a Grade 3 cancer. From everything I have read, UPSC is a sneaky little devil. In addition to my hysterectomy and chemo, I am also on Metformin every day. My oncologist was one of the doctors sponsoring the study but instead of getting into it, he recommended my GP just prescribe it for me (my A1c jumped from 5.8 to 8.5 while on chemo). I will be four years NED in September but know I am not out of the woods.

Good luck with the treatment. I agree about getting the tumor tested. New drugs are coming out all the time and there may be something that would work for her.

Love,

Eldri

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1534
Joined: Jun 2015

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

Donswife48
Posts: 293
Joined: Nov 2015

I agree with EZliving, UPSC is sneaky.  It hides and doesn't seem to give any inkling that it is spreading.  You are a great daughter to be your mom's advocate and research resource.  YES, Taxol does cause neuropathy.  It's not that neuropathy is so bad to have it, but it only adds to the discomfort and sometimes pain from chemo.  My chemo nurse always asked about neuropathy every visit.  When I told her my feet were getting numb, she immediatly told my doctor, and they stopped taxol for one of the chemos.  I pleaded with them (can you imagine begging for full chemo) to let me finish my 6 courses of chemo full strength, but they said no.  I sometimes catch my doctors assistant passing over my concerns, like they are not cancer related, but yes, you will easily find recent articles to reassure you that you are right.  Your mom is probably a tough lady, hug her, laugh with her and don't get down.  I was diagnosed with stage 3 in 2016, and so far so good.  And we all hope that the next day might be the day they find something to treat us that will CURE this disease.  Hugs to you and your mom.  Nancy

zsazsa1
Posts: 324
Joined: Oct 2018

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.

jjtrim's picture
jjtrim
Posts: 16
Joined: Mar 2019

Thank you for all the encouragement and advice, Ladies. 

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