Recurrence Treatment Experience

[Saintgermain]

Hello Teal Sisters,

I was 22 months NED Endometroid 3B luckily the CA125 is a good indicator for me after several tests and biopsies my Oncologist determined I am having a recurrence but in the early stages 2 very tiny spots in the retroperitoneal and 1 in the clavicle she doesn't want to do a watch and wait but wants me to have 6 Carbo/Taxol treatments my CA125 at diagnoses was 4300 stabilized at 15.

I so do not want to go thru this again have any of you gals had a similar journey long term survivors after recurrence.

[win_56]

Can they not blast them with radiotherapy. My oncologist gave me the option to have weekly taxol or radiotherapy. I know one day I guess I'll be back on the chemo train but just want to put it off as long as possible.x

[Saintgermain in reply to win_56]

Hello win56,

I thought the same thing I asked her she said if the cells are in these 2 areas its a good chance their lurking in other places. How did your radiotherapy go? How long ago?

[win_56 in reply to Saintgermain]

My oncologist said the same but I just didn't want to start taxol. I became platinum resistant 15 months ago. I've nearly finished the radiotherapy for the superclavicular lymph node got three more two go then I'll have two weeks off then have the radiotherapy for the pelvic lymph node. Yesterday I started to have a niggly pain where the pelvic node is. I just hope it's nothing more.

[Saintgermain in reply to win_56]

Hi Win,

That could be why she wants me to start as its my first recurrence and I'm platinum sensitive crazy that it shows up in supraclavicular lymph node the first biopsy of was the lymph nodes in my abdomen they were so so tiny it came back mild inflammation no cancer cells I was happy but my Onc wasn't convinced so she did biopsy of supraclavicular tissue showed same type as my original OC the good thing is that she sent off the tissue for Next Generation Sequencing testing I had about 88 genes originally tested all came back negative. No real symptoms just my CA125 going from 15 to 500 in 3 months. I know those niggly pains I don't think we ever get over that I read somewhere that cancer survivors have earned the right to be hypochondriacs I totally agree!

[win_56]

SeeIve been coping ok these past months but today I've had a good cry. I don't know what's come over me but I've just been very tearful and upset. My husband takes the brunt of my anxieties and anger over this disease and I hate myself after I've had a rant as I know it upsets him too I think it's because ive got the niggly pain and I start thinking about it over and over again. Sometimes it's good to talk to others outside family as well, it helps me. Whatever your treatment I hope it all goes well for you Let me know. Thinking of you. Xxx

[Saintgermain]

Oh my gosh how can we not have a good cry its such a hard journey at times I go to my bedroom away from my Husband cry wipe my tears and try to seem normal in front of him. I've had those rants Sister my Husband tries is best but doesn't really get it I don't blame him I don't really think anyone does until they've been down this road. Living with the uncertainty is so hard I remember when I finished treatment and was NED my Husband and well-meaning Friends were like now that's behind you oh how I hoped and prayed that I would be that percentage of a stage 3 that never recurred I actually think the recurrence is harder for me then when originally diagnosed. It's very normal for us to keep on replaying over and over again every pain very hard to turn off the "hamster wheel in our head" I'm in Chicago but really love this site helps alot. I'll be thinking of you also!

[win_56 in reply to Saintgermain]

😘❤️

[Alice77]

I have just changed hospital and oncologist because I had such a dreadful response to Paclitaxel last time...It worked but I had every side effect possible or so it seemed. My new oncologist is more reasonable and instead of insisting on the Paclitaxel as the previous one did he suggested Carbo Caelyx. I am only one cycle down in a six month course but so far have found it a much less traumatic experience. I have nausea and feel very tired but nothing more dramatic and no calls to the heroine needed. It may be worth asking about Caelyx or Doxyrubin.

[Alice77 in reply to Alice77]

Sorry autocorrevted to heroine instead of helpline...

[Saintgermain in reply to Alice77]

Isn’t that autocorrect a hoot! Have you lost any hair with the Caelyx?

[Alice77 in reply to Saintgermain]

I have used the cold cap and after only one cycle it's too early to say but hair thinning not hair loss is what is supposed to happen. I am hopeful that it will be a vast improvement on last time anyway.

[Saintgermain in reply to Alice77]

Hello Alice,

I used the cold cap when I was originally diagnosed it worked for me I lost about 15% of my hair I was very diligent with the protocol as I'm having a recurrence and have to go thru another 6 treatments of carbo/taxol I intend to use it again.

[Saintgermain in reply to Alice77]

Hi Alice,

Thank you for your info on the Carbo/Caelyx I've requested another consultation to discuss other drugs paired with carbo vs taxol I watched a youtube video from Dana Farber and their seeing the same results paired with newer drugs without the toxicity.

[Saintgermain in reply to Alice77]

Hi Alice,

Question was the Carbo/Caelyx for the first recurrence?

[Alice77 in reply to Saintgermain]

Yes. I was diagnosed early in 2021 IIIC Primary Peritoneal. Had 6 cycles Carboplatin and Paclitaxel, ultraradical surgery then two more cycles then Niraparib maintenance from April 2022. First recurrence a year later followed by scans re surgery but deemed inoperable, then Carbo Caelyx from this month for 6 cycles. Paclitaxel would have been the first option but oncologist agreed to Caelyx because of my reaction last time and continuing neuropathy and spinal damage. So far the Caelyx has been much easier to cope with although I am feeling exhausted.

[Saintgermain in reply to Alice77]

Hi Alice,

Thank you for the details that makes sense because you had a reaction why your onc would choose the Caelyx as I did pretty well with carbo/taxol I did take gabapentin as I was on it for a spine condition I don't know if that helped with the neuropathy taking hold. I'm glad in spite of the exhaustion your able to push thru treatment.

[Ruebacelle]

Am in my 9th year. Remission only 1 year. The rest constantly on chemo

[Saintgermain in reply to Ruebacelle]

Hello Ruebacelle,

I assume you've been on different chemo regimens 9 years have you been on an oral chemo at any point?

[Ruebacelle in reply to Saintgermain]

Started carbo taxol then avastin then gemsar then doxil then taxol then a trial taxol plus a peptide then carbo then endoxan oral then carbo then doxil now on 2 chemos with avastin took 4 months off this spring as I was exhausted. ProbBly ccontinue w 2 che.o combo w avastin another 2 or 3 months

[Saintgermain in reply to Ruebacelle]

Hi Ruebacelle, How long were you on the avastin following the carbo/Taxol? Were the side effects tolerable I've read fatigue is a common one. It sounds like you have very good care in France.

[Ruebacelle in reply to Saintgermain]

A year. Main problem was suppression of appetite but you know that so plan to make sure you take in enough calories and yes fatigue

[Tealgirl7]

Have they suggested using a parp inhibitor. There are a lot of options out there. I am in my 18th year after stage 4 HG SO. I have never been cancer free and I've always had nodes. My first diagnosis of the disease was from a Supra clavicular lymph node. Wishing you the best.

[Supermary in reply to Tealgirl7]

It’s amazing to hear 18yrs congratulations

I am stage 4b endometrial HER2 positive

3 years

What park inhibitors Tealgirl have you been on that you think we’re the best ?

[Tealgirl7 in reply to Supermary]

I am on limparza

[Tealgirl7 in reply to Supermary]

I took near Niraparib. It is used for people that are Bracha neg. Not sure I think it depends on your tumor diagnosis. Was she you the best

[Supermary in reply to Tealgirl7]

I’m HER2 +

No bracha

Thank you !

[Saintgermain in reply to Tealgirl7]

Hi Tealgirl7,

I've requested another consultation with my Onc prior to starting treatment as I have some questions that I need answered I was watching a youtube video last night from Dana Farber and theres alot good data with newer drugs being paired with Carbo instead of Taxol with good results without the toxicity or hair loss. Another good question to ask her about a Parp as I'm am also Braca neg. I have alot of questions you have to be your own advocate

[Saintgermain in reply to Tealgirl7]

Hi Tealgirl7,

They've sent the tissue sample from the Supra clavicular lymph node to Foundation One for next generation sequencing hoping that will determine what type of maintenance will a be good fit. My Onc is suggesting ongoing Keytruda or Avastin which is overwhelming to me as I really think she needs to get the results back as I'm a bit concerned of the long term side effects. 18 years you are an inspiration to all of us. Have you been a parp long term? Did the supra clavicular lymph node resolve after the intial treatment?

[Tealgirl7 in reply to Saintgermain]

I was on the parp for about a year and my disease then showed progression. I am starting a new trial combining the parp with avastin. It has been used for first line treatment but I think I am now fourth line. My node kept me company for 16 years. I had a radical neck dissection originally with the debulking as it still showed positive with the pet Scan. I had the second line of carbo paxil and that got rid of it.

[Saintgermain in reply to Tealgirl7]

I'm meeting with my Onc on Friday to go over treatment options my next generation tumor testing will not be back for 2 weeks. She's leaning toward carbo/taxol/keytruda since this is my first recurrence. 16 years you are an inspiration to us all being treated as a chronic disease.

[Rosado22]

I hope you get on well. I’ve just started carbo taxol today for ‘progression’ after six months on Niraparib maintenance - with a rising ca125. Three weekly. I’m not sure what to expect but I didn’t cold cap and then came home to read positive cold capping stories on my Facebook group. I do get reactions to cold and enjoyed my wigs!

[Saintgermain in reply to Rosado22]

I hope today goes well for you my front line was Carbo/taxol I didn’t have too many side effects as the pre cocktail and 3 days of steroids afterwards controlled that. Cold capping makes for a long day pretty much 8 hours.

[Rosado22]

it was fine thanks, very long day even without the cold capping - 9 till 4:45. I had it first time round too.

[Saintgermain]

Hi Bobbylynn,

I agree the recurrence is harder than first line it's such a relentless disease praying for you that the CT shows positive results. I've been doing some research and have a requested an appointment with my Onc as they now pair newer drugs with Carbo vs Taxol as Alice77 mentioned she wants to rush into Carbo/Taxol again but the hair loss I'm not vain but I want to look at other drug Husband's are well meaning but mine doesn't get it he's having his first of two knee replacements in a couple of weeks so I've planned my infusion schedule around that I'm in counseling which helps at times like yourself I am filled with anger and fear its very normal.

[Saintgermain]

I was hoping it wasn't as long but seems like a full 8 hours even without the cold capping. I would I'm praying for you that your side effects if any are minimal. Are you doing a minimal of 6 treatments.

[Saintgermain]

Hi Bobbylynn,

Thats the same opinion of my Onc but I need some answers prior to treatment so I'm at peace with the plan. A very draining process she wants to add Keytruda indefinitely, but a Friend/Survivor just came off a trial she's a little Gal she now is insulin dependent and developed autoimmune issues from it that are irreversible, so I need that question answered also.

[Saintgermain]

Hi Bobbylynn,

I love Toronto beautiful city my Ex-Husband was from there he was a disappointment but remarried a great guy I got to see a lot of Canada especially Quebec it was in the winter I'm from Chicago but there Winter's were brutal I've never felt such cold but the chocolate croissants made up for it pure Heaven. Also loved Tim Horton's especially their tarts.

I had sent a message to my Oncologist she just called me we're meeting this Friday. I mentioned other options she said those are primarily used for 2nd and 3rd line and Avastin is a bit of an older drug their using Keytruda in its place. I'm going to bring in my list of questions and we're going to discuss. I hope you fin