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Recurrence update

els19
Posts: 91
Joined: Jun 2014

i received my first diagnosis of UPSC stage IIIc in April of 2014 and received the gold standard of treatment at the time surgery, 6 rounds of carbo taxol, 25 rads and brachytherapy. I was NED after the first infusion and remained that way until this past September when severe lower abdominal pain sent me to my local ER where three enlarged lymph nodes were found that indicated metastatic cancer. I immediately notified my Gyn Onc and found myself back in chem ten days later. His belief is since the chemo worked so well the first time it will work again and again give me a long reprieve. And so far it seems to be working. I was no longer in pain after the first chemo. My CA125 which appears to be very accurate for me dropped 40% after the first chemo and was down 63% following the 2nd chemo. I had my third infusion yesterday and am hoping for another big drop with the next blood tests.

i hesitated to post about my recurrence because I know how much those long anniversary posts mean and I didn't want to discourage anyone. But I was feeling a bit desperate  and turned to the place that always gave me hope and quality information. And of course, I again found it. I also remembered the posts i've seen over the years of members who have occasionally popped in whom were long term survivors and did suffer recurrences along the way but went on to have a long time afterwards. So, I'm hoping that my experience will also bring hope that you can recur after a long period of NED and still find success.

I've also found that my previous experience is helping me this time. After I got off those pain meds that make me loopy and got my head straight, I realized that even from the beginning I was approaching this time differently. In 2014 after receiving the diagnosis of such an aggressive cancer I thought I was dying. I now know it's possible to survive. And believe me I've made the most of the past six years. Having cancer gave me a new appreciation of life. This time even in pain and drugged my first thought was preventing side effects. Through this site I found help in trying icing and it's working! I have no progression of the neuropathy that I have from the last time. I'm infused slowly because of my reaction to Taxol the first time and I'm wearing the mitts and booties for five hours but it's very doable. A benefit I received after the first infusion was that my husband got permission to join me and it's a big help. I can even dose off because he's timing it. At the first sign of a mouth sore, I'm on top of it and stop them. I did get the scalp rash again but at the first sign I treated it and it went away. After the first infusion i got pretty sick with nausea, diarrhea and insomnia. A consultation with my NP and Gyn Onc led to a change in medications and I felt so much better after the second infusion. So, I'm using what I learned the first time to make this time better. Thank you again ladies! You provide so much informatio, hope and help!

zsazsa1
Posts: 553
Joined: Oct 2018

Thank you, Els!  Thank you for coming back for the periodic NED posts, and thank you for coming back now, for support.

BluebirdOne's picture
BluebirdOne
Posts: 375
Joined: Jul 2018

I can only speak for myself, but I want to hear from everyone as they go through this cancer. Your post contains valuable information for us going forward. It gives us hope that we can actually get to 5 years of survival! And face a recurrence with grace, experience and wisdom. Thanks!

xxoo

Denise 

LisaPizza's picture
LisaPizza
Posts: 340
Joined: Feb 2018

What a fantastic update. Happy for you, and a nice resource for others who follow. 

Kaleena's picture
Kaleena
Posts: 2056
Joined: Nov 2009

Glad to hear you are on top of it.   Thanks for the update.   

Armywife's picture
Armywife
Posts: 452
Joined: Feb 2018

Thank you so much for coming back to share with us.  We are here for you, and I'm so inspired by your presence of mind and grace.  I'll be praying for you as you navigate these last few chemos.

els19
Posts: 91
Joined: Jun 2014

I had chemo yesterday and have my latest results. My CA125 in September when my recurrence was diagnosed was 605  it's now 85. I'm hoping that my fourth chemo yesterday will drop it down in the normal range. My problem now is I'm anemic. It's the first time I've had this problem. I'm starting on iron supplements and hopefully they will help. But overall things are going well!

MAbound
Posts: 1104
Joined: Jun 2016

I'm assuming that you are taking the iron supplements under your oncologist's advice to do so. If not, please tell him that you are taking this and get his or her ok to do so. There are many supplements and OTCs that can have an unwanted impact on chemo, so you need to keep him/her in the loop about what you are taking so that you don't inadvertantly do yourself harm.

Anemia and extreme fatigue are to be expected during chemo as you go into the time period that is called nadir and usually you rebound as you approach your next infusion. This will get progressively more pronounced with each subsequent infusion as the effects of chemo are cumulative. If you are tired...rest!! Your body is fighting a major battle and it's going to need all the rest you can give it while you are going through this. 

If you don't rebound, the blood work that your oncologist has you have done prior to your next infusion will show the problem and your oncologist will treat it as necessary. You do not want to self medicate with supplements or other OTCs during chemo because they can cause a problem where they wouldn't in other circumstances. For example, anti-oxidants can reduce chemo effectiveness because they suppress cancer cells when infusions are timed to go after them at their most active. There are also studies that show that iron supplementation during chemo for breast cancer increases odds of recurrence by 79%. Being in treatment is not normal times for you, so give yourself permission to rest when you are tired and don't take anything that you haven't gotten an ok for from your oncolgist or the chemo nurses.

els19
Posts: 91
Joined: Jun 2014

Thanks for the informatio. My oncologist is the one that insisted I take the iron supplements and wants me to start with OTC drugs. I'm not feeling all that fatigued right now. At least not more than I have been and I feel the most fatigued the week after chemo. In fact, I took two longer walks than usual last week. My family doctor also received my blood tests and her office called today about the blood tests results and was happy to hear I was going to take iron supplements. I had read about iron and cancer and did mention it to my gyn/onc but he said I need the supplements and he wants to avoid transfusions. But I appreciate all the information you gave me. I'll be watching it all carefully. And I never take anything without my doctors approval.

Diane The Fighter's picture
Diane The Fighter
Posts: 15
Joined: Oct 2020

We are with you and prayers of healing... I was just coming to look at posts to see if I should do the radiation 25 rounds followed ny chemo my Dr wants to start after my 4 or 5 week post surgery date, I am scared to do it and since it nearly always comes back is there a point to do it at all?  Anyone have thoughts on that? Mine was all contained but just came back to be in the peritonial fluid as well so my Doc says it is a IIIa now.... Hope you are NED soon

cmb's picture
cmb
Posts: 644
Joined: Jan 2018

Diane,

MAbound posted a good summary of the criteria for radiation at https://csn.cancer.org/comment/1676704#comment-1676704

Some doctors like to save radiation for a recurrence, but my gynecological oncologist and medical oncologist urged me to have pelvic radiation after chemo, even though both admitted that it wasn't proven to improve survivorship.

It's very difficult decision when weighing the possibility of long-term side effects against the possible benefits. Given the aggressiveness of my type of cancer, I decided to have the radiation, even though a CT-scan indicated I was NED after chemo.

And I must admit that I was also influenced by my mother's battle with advanced cervical cancer. Having worked as a nurse's aide in a hospital, she saw the awful side effects patients suffered from the far more damaging radiation treatments back in the 1960s-1970s. And so, she declined radiation. She then had numerous surgeries and different chemo treatments for several years, until a new chemo drug finally put her into remission. But she later told me that she regretted not having radiation as perhaps it might have spared her the years of additional treatments. Of course, there's no way of knowing whether she was right or wrong.

I decided to have radiation because I didn't want to have the same second guesses later. If my cancer returns, at least I know that I did everything I could initially to forestall it. But others here have made the opposite decision. We each have to choose based on what we know and feel is right for us.

Forherself's picture
Forherself
Posts: 503
Joined: Jan 2019

I hope you find a decision that is right for you.  I have read that peritoneal wash did not affect stage.  But please remember that women who don't have recurrence often leave the discussion board as they want to forget about this and get on with their life.  There are women who have not recurred.  There is that hope for you too.  

Sue

els19
Posts: 91
Joined: Jun 2014

I did radiation after chemo six years ago and I felt at the time that I was hitting it with everything I could and it gave me almost six years. I wouldn't trade those years for anything. And many do not recur. I know it's hard to make these tough decisions but recurring is not inevitable  for everyone. Although today is one of those days that I feel pretty lousy,  chemo is working for me and reducing my CA125. So, I'm hopeful I'll again have a nice period of NED as many others have had. 

els19
Posts: 91
Joined: Jun 2014

I completed my 6th chemo and my CA125 went down to 23. i saw a lot smaller drops on the last three. My follow up CT scan showed a 30% reduction in the tumors. I have 3 swollen lymph nodes. One is almost normal size and quite small, one is 1.2x1.2 and the largest is 2.2x2.2. My genomic test showed they could not find a target and I'm not a candidate for immunotherapy. It also showed I was HER2 positive at level 2 but further testing with FISH showed I was leaning toward 1 and it was not impacting my cancer so Herceptin would not help. The chemo was causing anemia but by adding a small iron supplement and changes in diet, I was able to raise my blood levels and almost all are back in normal range. My doctor wants to add three more chemos and I had the first of the three yesterday. We will then do another CT scan. He finds that the CA125 is a very accurate way of tracking my cancer and said he'd like me to take a break from chemo after the third chemo. He also mentioned going on Keytruda and Lenvima. I haven't read many positIves about the drugs on this board but he said he has many patients on them and has seen mostly amazing results. He did say that some have had problems and are monitored very closely. So decision time is ahead after the next CT scan. Taking a break sounds good and would help me to get stronger but it's also a bit disconcerting thinking the cancer could just start growing again. But we will be doing frequent CA125 tests. Also, I have continued the icing therapy through all infusions and have seen no increase in the neuropathy that I still have from my original treatment.

Molly110
Posts: 186
Joined: Oct 2019

Els, I'm so glad that you have an oncologist who knows you, knows your cancer, and is someone in whom you have complete faith.

Molly

dgrdalton's picture
dgrdalton
Posts: 151
Joined: Jun 2017

Els19, I was wondering how you were doing. Those breaks can help you to get strength back, but I have had my cancer grow during them. I still need the break if the treatment gets me down. The Keytruda/Lenvima seemed easier to me than chemo for the first 2 to 3 months, but then the thyroditis, kidney function decrease and fatigue just got to be too much. But some ladies can tolerate it for many months. As long as you are monitored closely, it could be beneficial. With this cancer, you never know. Wishing you the best whatever you decide.

els19
Posts: 91
Joined: Jun 2014

I really appreciate your comments. I am a little nervous about a break. It's nice to know the Ketruda and Lenvima worked for awhile. Thank you!

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