1st Recurrence: GemCarbo (gemcitabine and carboplatin)

[Itha]

Hi everyone

I have my first recurrence (lucky for me localised lesion, detected early). Initial diagnoses: stage 4B peritoneal cancer Oct 2020.

Way forward: surgery to remove the lesion then 6 cycles of GemCarbo (gemcitabine and carboplatin). Week 1 GemCarbo gemcitabine and carboplatin, week 2 gemcitabine, week 3 off, repeat.

I would like to know who have had this combination, what was the side effects and any advice on preparing and recovering?

Thanks so much!

Itha

[suzannebirch]

So sorry to hear that. Can I ask what your symptoms were or was it discoverd by a scan? X

[Itha in reply to suzannebirch]

My CA125 is sensitive and a good test. Was stable at 9-11 for all this time and the doubled from Sept to Oct to 27.3 and slowly rising since then. Now at 30.5. Oncologist send me for a PET scan which confirmed a localised lesion. I also noticed feeling bloated again as well as being full quickly

I am grateful it hasn't spread yet but disappointed it is back as the past 12 months have been a bit rough for me (broken ankle with surgery (Dec 2021), broken shoulder and pelvis (Feb 2022) and major hernia repair on May plus removal of port and the pin in my ankle.

I really don't want a port again - it bothered me a LOT but my veins are awful...so not looking forward to treatment 2 weeks out of 3 for 6 cycles and all the hunting for a vein....

[suzannebirch in reply to Itha]

So sorry you have had such a rough time. I am still recovering from a full abdominal reconstruction because of a massive incisional hernia. Its rough! I have kept my port for monthly bloods cos I can't bear the searching round and several painful attempts to find a vein but sorry to hear you had issues with your port. Keep us posted and loads of luck for your treatment. Will be thinking of you xxxx

[Itha in reply to suzannebirch]

For some strange reason they are not allowed to use the port for anything but the chemo in South Africa...so I still had to endure the needles regardless....this is one of the reasons I decided to get it out

[Saffery1 in reply to Itha]

With my port it is also only the chemo nurses who are allowed to use it - this is to cut down the risk of infection by ensuring only experienced staff are accessing it. I'm in the UK x

[Itha in reply to suzannebirch]

PS: my massive hernia repair was done 25 May....and I still have a very sensitive abdomen (feels like bruising to the touch)...it takes a very long time to get back to feeling normal. A very large area also completely 'dead' - like touching someone else's stomach

[suzannebirch in reply to Itha]

Yep I also have the dead area but only 7 weeks in so hoping it gets better. Good luck hun xx

[Inguc_is in reply to Itha]

did u feel bloated every day or just sometimes?

[Itha in reply to Inguc_is]

Not all the time but definitely more days than not

[Tulips66]

Hi Itha, I started on that regime in 2021 but it played havoc with my white blood cells & even after having the Neulasta injections my white blood cells were still too low by the time I was due to have the Gemcitabine only infusion. My oncologist decided to just give me the Carbo/Gemcitabine infusion every 3 weeks instead & no Gemcitabine in between. This worked much better for me. My hair thinned a bit & I suffered with heartburn for a couple of days after but otherwise it was tolerable . It has kept me stable & after having 6 infusions I continued on the Gemcitabine only till recently. I am starting on Niraparib in Jan. You might not have any side effects on it yourself but if you do they will sort you out. Its definitely worth a try. Good luck on it & let me know how you are doing

[Itha in reply to Tulips66]

Thanks! It is much more useful hearing from people who've been through this versus reading the medical sites

[Riverflo]

Hi Itha,I'm on the same combo and regime at the moment but it's my third round of chemo, following two previous rounds, two surgeries, Niraparib and a clinical trial, all since Jan 2020. So yours stayed at bay for longer.

Anyway I've had 3 lots so far. The first two left me nauseous, tired and with occasional vomiting. And after the second gem I had diarrhea for 5 days but now know to take imodium straight away when it happens.

The side effects following thd third lot have been surprisingly mild. As long as I take the anti nausea tablets they provide I functuon fairly normally.

It's been well worth it because my CA125 is dropping down nicely. I hope it works well for you. Best of luck,

Martine x

[Gartenfee]

Hi Itha. I have been through it two times. in the end I felt exhausted. Bei careful because of thrombosis. Please ask for Prophylaxe. Wish you good luck

[Riverflo in reply to Gartenfee]

Hi Gartenfree,Do you mean this treatment causes thrombosis? I'm asking because I'm on the treatment now and aiready had a thrombosis in each lung before starting and I think I now have them in one leg. But it wasn't mentioned as a side effect. I do daily heparin injections.

Thanks, Martine x

[Gartenfee in reply to Riverflo]

Yes Martine. I developed one in my leg. Please inform your doctors about any unusual pain. Cheers

[Riverflo in reply to Gartenfee]

Thanks, I didn't know. I have two bruised lumps in one leg. Will get it checked

[Emmacrispins]

Hi Itha, I just wanted to reach out to you as I’ve also just had my first recurrence confirmed.

It’s 2 years for me since treatment finished so I totally understand how upsetting it is to face this. I think it’s almost felt worse than diagnosis.

My ongoing treatment is different than yours, carbo/taxol again, followed by a parp. Mine is also two very small nodules and low volume. I’m thankful for that.

Sending you love and positivity for this next bump in the road, Emma xx

[Itha in reply to Emmacrispins]

Hi, when does your treatment start?

I seem to always have everything happening this time of the year. My surgeon said because the tutor is so small and my CA rising slowly, she prefers to wait till after Christmas. It is a relieve as it allows me to use these 4 weeks to get strong and fit and enjoy the holidays (been working very hard this year, time to relax). So it is all still a bit uncertain with when I am starting.

My oncologist is considering Avastin again (which worked for me previously) or Lynparza again. Not sure yet. I haven't seen her yet to discuss the way forward.

We can keep each other informed...

[Emmacrispins in reply to Itha]

My oncologist was keen to watch and wait for now, which freaked me out a bit at first, but I now understand that it makes sense not to rush in when we don’t need to.

Im due for another scan in 7 weeks, will decide then if we start treatment or wait longer.

[Davonian]

Like you my marker has always been a good indicator even though in the past I've been told not to go by it. As soon as it starts to rise I know I'm back on treatment again. Currently having Carbo/Gem and was having day 8 single Gem until now. I'm due cycle 4 this week and it has been playing havoc with my bloods. First cycle after day 8, I had sepsis. Admitted to hospital platelets x 3, blood x 3 and antibiotics. After recovery it was continued with Filgrastim injections after day 8 of cycle 2. Dosage reduction of chemo. Cycle 3 bloods low, blood transfusion, was a new woman again! Platelets also and had a reaction after just a minute or 2 of the infusion. Decided to pass on that 😀 when offered to restart after medication given. Now looking ahead to this coming Wednesday and Carbo/Gem cycle 4. Single dose day 8 has been dropped. Filgrastim from day 6. Avastin will be added at some point which I had after first line. Diagnosed 2016 with Ppc hgs Brca neg. I knew it was a hard regime and can play havoc with bloods but felt I needed to hit it hard and it wouldn't be an easy fight. I've buried my head in the sand re my marker levels but know it was at 311 when I started. Yes, my hair has thinned and I have bald patches but it's winter time and a hat goes on. My energy levels have been low at times but on the good days I make up for the lost days. I march forward to completion.

Just to add, to make things easier on my veins I have a Picc line.

[Itha in reply to Davonian]

Thanks for your detailed answer. I had a port previously but it was removed in May during my hernia repair. I hated it. But my veins are awful....so between a rock and a hard place...more surgery, more healing...and a thing I really don't like inside my body...summer in South Africa so wearing hats and stuff not so much fun...

[couls in reply to Davonian]

Hi Davonian, I’m just wondering are you in the UK ? I also benefited from having Avastin and was wondering if it’s now added as part of a regime rather than just a maintenance. Take care, Val. X

[sbab94]

Hi Itha,

My mom was also diagnosed in Dec 2020 for 4a primary peritoneal cancer. She has been responding well to platinum-based chemotherapy, and was in remission for a year.

First recurrence occured as a minor lesion in one of her inguinal nodes, after it showed up on a PET scan (surgically removed thereafter).

She is currently under GemCarbo regiment as well. Although a few unpleasant sideeffects like Nause and sleeplessness are not evident any longer, she does seem to have a lot of fatigue, in addition to very low blood counts (WBC, platelets, HBG). She's just finished her first cycle (of six in total), but she's coping well so far. The nutritionist has asked her to place extra emphasis on diet - more leafy veggies, nuts, milk, etc.

I hope you pull through it as well, wishing you the best of strength

[Itha in reply to sbab94]

Thanks so much! I generally eat healthy and am strong and fit but I will take special care with my diet. I hope your mom does well and she recovers quickly

[Leniko]

First diagnosed OVCA Stage 1C in 2008. TAH and 6 rounds Carbo/Taxol followed by maintenance Avastin kept me in remission. Discontinued Avastin in 2017. In Jan 2019 my CA 125 was rising. Recurrence of OVCA ( presented as a tumor on my psoas muscle in my back. Location too tricky for surgery). Underwent 3 rounds of the Carboplatin /Gemzar regimen.  Neulasta was used to keep my WBC in acceptable range.  In April 2019, a CT scan showed major tumor shrinkage!!  (Carbo/Gem side effects were fatigue and some nausea. Was careful about what I ate to help keep my stomach settled. Ondansetron is a great anti-nausea pill. )Restarted an every 6 weeks infusion of Avastin.  Continued on Avastin and did well until Sept 2022. CA125 rose again, which showed Avastin was becoming less effective. Psoas Tumor was growing. In mid-December 2022 I will repeat the Carbo/Gemzar protocol. Hoping it will shrink the tumor again. Was Very Effective last time.   I urge all of you to continue going for bloodwork even after 5 years clear. Mine didn’t recur until year 6.  Glad I kept insisting in follow-ups. Keeping all in my Prayers! 🙏

[Itha in reply to Leniko]

Holding thumbs - keep me posted on your progress. My lesion medial to psoas muscle. I haven't spoken to the surgeon yet but I have not had any feedback yet saying she can't operate on it.