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Very Probable Recurrence (Update about my mom)

rcdeman
Posts: 263
Joined: Aug 2016

Hello all,

I'm not sure if there's anyone who still remembers me. My last post about my mom was in 09/28/18 when she went into remission after being diagnosed with UPSC IIIC2 in 08/2016. 

It's been several years and I'm very sad to see many of the ladies who were a huge support and encouragement to me have passed on. Yet I hope there are still many ladies that are still here and actively encouraging others (both old and new) on this board. 

I wanted to give an update about my mother. Since 2020, her CA-125 numbers have gradually gone up slowly to the late 20s but not enough to alarm the oncologist or us. Then in March 2021, when my mother finished getting her COVID-19 vaccinations (Moderna), she started feeling fatigued. She attributed all her aches and pains to the side-effects of the shots.

Then sometime in April, she started feeling several lumps around her left chest and under her left armpit. Being someone who suffers from lipoma, she thought that these lumps were just more lipoma lumps.

However, sometime in June 2021, she started feeling several more lumps, one firm lump around her left supraclavicular area, as well as her previous ones.

It wasn't until July 12, 2021, that she did her routine blood-work that it was found her CA-125 increased from the 20s to over 200 in just 6 months. Her routine CT scan on 07/19/21 has been cancelled, and an urgent PET/CT scan appointment will be made as soon as possible. 

I'm connecting the dots right now and at this moment, I can't help but think that all her lumps are metastatic lymph nodes that (supraclavicular lymph nodess, axillary (under armpit), left chest area, which I now suspect is metastases of cancer to her lymph nodes.  

I wonder if there is anyone here who has had experience with UPSC recurrence to the neck and chest area (lymph nodes) and what treatments they have had and whether science has improved recently to deal with cancer in lymph nodes...

Please pray for my mom... It's so disheartening that we have to go through this again... and I'm in such a panic again... :(... I'll try to keep everyone updated once we get her PET/CT scan results if they're interested. My mom's cancer journey is posted under her bio if anyone would like to see additional information. 

With love,
Rebecca

Afoste3
Posts: 21
Joined: Jun 2020

I've been here for about a year supporting my mom (she also has UPSC/MMMT tumor).  I'm sorry you and your mom are dealing with all this again, it's so stressful and causes a lot of worry and sadness.  One thing I've learned (you probably did too from your first go around) is that it's a process to figure out next steps and trying not to jump ahead to bad conclusions does help. Easier said than done of course.

My mom's cancer spread to her omentum, not the lymph nodes, so I can't give any advice on treatment specific to that.  Did your mom have the genomic testing done on her tumor through FoundationOne or CARIS?  If not, that's something to do.  They will test and see what gene mutations are present to see if any targeted treatment might work.  I (think) they can send whatever was taken out the first time for testing if it's been preserved.  It looks expensive on the website but they have financial assistance.  My mom would have only needed to pay 20%, but Medicare ended up covering it for her 100%.

Please keep us updated if you feel up to it.  I'm praying for you and your mom.

Anne-Marie

rcdeman
Posts: 263
Joined: Aug 2016

Hi Anne-Marie,

Thank you for your suggestion. Although we think it's too late for her to use her old tumor for testing, it is possible we can do a tissue biopsy of the lump that have formed on her neck. Back in 2016 which she first had her debulking surgery, it wasn't standard procedure to do tissue testing and our insurance wouldn't cover it, but I think it's become more widespread to do so now. I hope your mother is doing well, and thank you for your reply. It gives me some direction on what steps I should take next. Right now, we are still working to get a PET/CT scan appointment ASAP.  I will keep you updated, thank you.

With Love,
Rebecca

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1795
Joined: Jun 2015

Rebecca, I remember you. And, I'm sorry to hear that you and your Mom are having to deal with this again. I sure hope she doesn't have a recurrence. Please come back and let us know what you find out after the scans. I don't have any experience to offer up and I'm hoping someone else can provide you feedback. I do know that they have made significant improvements with immunotherapy. There are more options now than when your Mom went through her initial treatments.

Love and Hugs,

Cindi

rcdeman
Posts: 263
Joined: Aug 2016

Dear Cindi,

I remember you too, Cindi! I am always encouraged when I see the ladies who are surviving and flourishing and still being a blessing actively on this board. Thank you for your response. 

My mom's CA-125 went from 27 to above 200s within just 6 months. It's a frightening thing and I pray that this isn't a recurrence, no matter how likely it might be. I remember Mary Ann (daisy366) had a similar issue with her UPSC spreading to her supraclavicular lymph nodes and having to go through that back in 2011... it's just too sad and disheartening. 

I haven't read through enough research to know the significant improvements we have now in 2021 with immunotherapy or other therapies. But it seems carboplatin/taxol/paclitaxel are still the norm when it comes to chemotherapy treatment... Ultimately, the only "cure" is surgery, but when it's spread to various lymph nodes around the body, I'm unsure what surgeries are possible and what targeted therapies would be effective. For now, we will have to wait for the PET/CT scans and just pray.

I will keep you all updated. Thank you so much,
Rebecca

alicia2020
Posts: 162
Joined: Sep 2020

Rebecca, I've only been part of this wonderful group for about a year. Everyone can empathize with you and your mom. I can't offer any help as to your questions, but there are many here who can. Our Unofficial Fearless Leader, the lovely cmb, will be along shortly I'm sure, and can lead you to a wealth of information!

You and your mother will be in my constant prayers for this group and all those suffering from cancer.

❤️, Alicia

rcdeman
Posts: 263
Joined: Aug 2016

Thank you for your encouragment and prayers, Alicia. My mom and I really appreciate it. I hope you are doing well after your treatments in March. I'm sorry you had to join the ranks, but this board and all the lovely people on it makes the sad situation just a little bit better.

With Love,
Rebecca

MAbound
Posts: 1150
Joined: Jun 2016

I, too, remember you! I wish you didn't need to ever come back, but I will certainly add your mom to my prayers. ((Hugs for you, too!))

 

cmb's picture
cmb
Posts: 723
Joined: Jan 2018

As others have noted, there are new treatments available now that were not available when your mother was first diagnosed. And since it's been some years since your mother received her initial treatment, her doctors may recommend the same chemotherapy that worked the first time to put her in remission. Genetic/genomic testing is always a good idea now to determine what other options may be available.

But Alicia gives me too much credit – the value of this site results from the contributions of many women and family members sharing their experiences. We're especially grateful to women like MoeKay, No Time for Cancer and other members who continue to respond to questions and comments from others long after their own treatment has ended.

However, a lot of the valuable information shared here can be hard to find later since the searching function is not as robust as we'd like. I wasn't successful in locating a past discussion about a possible recurrence in the lymph nodes in the areas where your mother's are located. (Although that doesn't mean this wasn't written about here – someone else may remember the particulars).

But one thread that I did come across while looking that you may not have seen before talked a lot about supplements to support a patient during and after treatment. This is not a subject that I have any experience with, so see https://csn.cancer.org/node/321092 for what others have to say about this.

And should chemo be necessary again, see the link to the discussion on "Icing" in the FAQ at the top of the forum. There has been a lot of conversations about icing the hands and feet during chemo to prevent neuropathy in the past couple of years.

Keep us posted on what happens after your mother's PET/CT scan.

rcdeman
Posts: 263
Joined: Aug 2016

Dear CMB,

Your expertise and dedication to this board and to these ladies is nothing short of extraordinary. I appreciate all your suggestions and advice. My mother did originally take multiple supplements during her original treatments to boost up her immune system, but she's been lax and has pretty much stopped most of the extraneous supplements ever since her remission. I will look to see whether it's best for her to restart the regimen. 

I am also trying to research what targeted options are available these days, although it's been difficult.

Thank you! I will definitely keep you all updated. 

With Love,
Rebecca

alicia2020
Posts: 162
Joined: Sep 2020

deserve credit here! You are right, cmb! :))

Harmanygroves's picture
Harmanygroves
Posts: 217
Joined: Jun 2021

The contributions of many and all have helped me tremendously. That said, I want to give a special shout out of gratitude to CMB. While many women, including the amazing women who have departed us, have been exceptionally helpful, I feel like CMB is the shepherd of this good flock. Thank you to all the women. That said, tremendous gratitude to the shepherd. CMB, your dedication and commitment to the board deserves a high 5, for sure. 

Forherself's picture
Forherself
Posts: 559
Joined: Jan 2019

by CMB.  New members may not know that in 2018 this dicussion board was lost, disappeared.  CSN lost our discussions.  I had just joined and was in a difficult time, and it was shocking to me what a loss I felt when we couldn't read all the posts.   If I remember correctly, it was about 6 months worth of discussions.   CMB was able to somehow capture all our lost posts and reposted them.  It is hard to describe the gratitude I felt.  The discussions are personal and valuable.  I didn't know how much until we lost them, and CMB restored them.  So yes, I would agree, special gratitude for CMB, and the care she takes of this discussion board, as well as her advice and experience.  The board says I joined in 2019.  THAT is not true. I joined in 2018, but was lost in the disaster.  I even remember Bluebird1 could not find her name, and CMB said you joined previously as Bluebirdone.   or visa versa.   

BluebirdOne's picture
BluebirdOne
Posts: 437
Joined: Jul 2018

When the outage happened I was in the throes of treatment, out of my mind due to chemo, fatigue, brain fog, depression and despondent. I could not remember what my login name was, not functioning well at all. There are many angels here like cmb and others too numerous to mention, who guide us and help us along. I think that many of us so appreciate those who reached out to us to help even if it was something as mundane as a login ID, or supporting us in our final journey. Coming up on three years after my initial dx and looking forward to three years NED in October, my appreciation of cmb, NoTimeForCancer, Eldri, and those who are no longer with us, is immeasurable. It is a strange place to find oneself missing people I have never physically met, but have bonded with, who are now gone, like Fluff, Pinky, Lulu, dermaus, Cheese and Donna Faye, I miss their thoughts and wisdom everyday. (and where is Army Wife?) among others. The point is that we are here for each other for a point in time, but the collective thoughts, experiences and wisdom live on. 

xxoo

Denise 

Harmanygroves's picture
Harmanygroves
Posts: 217
Joined: Jun 2021

I noticed Army Wife was last online here in June! 

XO

BluebirdOne's picture
BluebirdOne
Posts: 437
Joined: Jul 2018

I know many of us come and go, but many read without commenting. I miss those who have not commented in a while, while at the same time, I am not as active as I once was as well.

Might be time for a roll call?

xxoo

Denise

els19
Posts: 105
Joined: Jun 2014

Rebecca, I'm sorry to hear about your mother's recurrence. I was originally diagnosed in April of 2014 for stage 3c UPSC. I finished 6 rounds of Carbo/Taxol, 25 rads and brachetherphy in November of 2014 and was NED until late August 2020 when severe abdominal pain sent me to the ER and 3 cancerous pelvic lymph nodes were discovered. My CA 125 was in the 600s. Since it had been so long since I had chemo and it kept me NED for so long, my gyn/onc had me back in chemo on Carbo/Taxol within 2 weeks. They did still have my original tumor and sent a part of it for genomic testing. So your mother's tumor will not be too old. I've found that there are a lot of new discoveries in the battle of this terrible disease since my original diagnosis. I completed nine rounds of chemo in March which managed to shrink two of my tumors and annihilate the third one. My CA125 was in the twenties. i do admit that the nine chemos left me depleted. I've been on a break to build up strength. My recent CT scan showed no new tumors and a very slight increase in the two remaining tumors and CA125. I'm feeling very well right now with energy! And it feels so good to feel energetic again. My CA125, which is very accurate for me, will be tested every 6 weeks. I'm sure I'll be back in treatment by fall.   If I can remain fairly stable long enough my doctor said that going back on the same chemo may be best since it does work for me. Another option he discussed was Keytuda with Lenvima. I've been reading about how well it's worked for many women giving them several more years at this point. So don't give up hope. There are lots of options for your mother. Good luck!

rcdeman
Posts: 263
Joined: Aug 2016

Thank you for posting your story, els19. It gives me relief that we are not alone. My mother is now in a very similar situation to you. We have yet to know how much the cancer has spread other than we know it's reappeared. I will definitely look into Keytruda and Lenvima and see if those might be options in the future. I don't know if my mother's original tumor has been preserved, so we will have too ask and hope that we can do some tissue testing on it for better targeted treatment.

I also pray for your progress and recuperation in beating this cancer. I would love it if you continue to update on your progress.

With Love,
Rebecca

Forherself's picture
Forherself
Posts: 559
Joined: Jan 2019

For your Mother Rebecca.   You are such a gift to her.

jan9wils's picture
jan9wils
Posts: 161
Joined: Mar 2017

Rebecca,

I'm sorry to read about your mother's possible recurrence.  I do not have the same kind of cancer as she does but I have recurred several times.  It does seem there are more options available now than when I first recurred in 2016. I am praying for your mother. May you both have strength and courage as you manage these uncertain times.

Jan

Kaleena's picture
Kaleena
Posts: 2064
Joined: Nov 2009

Hi Rebecca

sorry to hear of your mom's possible recurrence.   Is there any chance that the vaccine caused some lymph node swelling?   What arm did she get it in?   They have had cases where lymph nodes were swelled on the same side where getting the shot.  I realize she received it in March but didn't know if it could last longer as they indicate you shouldn't get a mammogram for at least a month from getting the vaccine.    Just a thought and praying it's not a recurrence

As Jan has indicated I too have had several recurrences, although my cancer was not the same.  

Keeping you both in my thoughts and Prayers

Kathy

Dak82's picture
Dak82
Posts: 78
Joined: Dec 2020

If your mom's original tumor samples are available definitely ask about FoundationOne testing. I am currently on dostarlimab but did two rounds of keytruda first. My understanding is you need testing from an FDA approved lab to confirm the genomic characteristics of the cancer cells to confirm the immunotherapy is the right one. Not only was a confirmed with mismatch repair deficiency and borderline MSI--which allowed both Keytruda and dostarlimab, but I also have the BRCA2 mutation which opens up the possibility of a PARP inhibitor if the immune checkpoint inhibitors don't work. The science is rapidly advancing!

Both of you hang in there!

Deb

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