Got to Have Chemo Again

[Kouyate]

Hi all, it's been 5 weeks since I had my second debulking surgery following my first recurrence after 5 years free of OC which was diagnosed in 2016/2017. My surgeon has said that altho they removed any visible signs of the disease, there is always a chance that cells can be left behind so wants me to have 6 rnds of chemo. Wot r ur thoughts please, and how did u cope having chemo again? Did ur body react any different to the first time, ie sickness, hair loss etc?

[Realistic]

Sounds like it necessary chemo is apparently incredibly expensive so they wouldn't do unless it was absolutely necessary. And the good thing is there watching you and doing something before anything goes wrong. Sounds like there on top of things. Try not to worry if you'll react any differently we all know its not nice but it obviously did the trick the first timeSounds like you've done brilliantly the last 5 years so try not to worry get your treatment things may be the same they may not, who can say were all different. Just get rid of any rouge cells if there there, best too be safe than sorry.

Good luck with your treatment. Sending love & hugs SheilaFxxx

[Lyndy]

Have they said which combo they want to give you? I had carboplatin as a single agent which was very do-able but there are other combinations which might give different side effects. Having gone through a second debulking you don’t want it to get any further chances though…I found that I settled into a rhythm quite quickly…hope it goes really well for you xx

[Bettyxxx]

Hi KouyateI too had second surgery after 4.5 yrs clear, i had chemo too which was exactly the same as the first time round, i found it fairly easy as i knew what to expect and how to deal with it xx.

I treated myself to a new wig as i like to wear mine all the time. I was offered parp inhibitor after the chemo so that may be an option for you too if your in the uk. I am 3 yrs on and going strong so good luck, worst bit is over just a bit of chemo now but if it gives you a good run then definitely worth it xx

Diane

Xx

[JustKBO]

Hi there. You definitely need the second line of chemo to mop up stray cells.

I think I’m right in saying they only do a second debulking if they are fairly confident of getting it all but cancer seeds are very clever at hiding so you need the chemo to mop up any hidden cells.

My chemo combo was different ie carbo and Caelyx. You know I already can’t remember what it was like, except it was Not as bad as the carbo and Taxol I had the first time.

I’m now on a Parib and doing well. You were NED for 4.5 years which is brilliant. You will probably do the same again and likely much more. So I say go for it! You’ve got this!

Maria.

[Irisisme]

Hi Kouyate,I’m on a break from 3rd line chemo, diagnosed in 2016, neo-adjuvant chemo before debulked in Jan 2017, no point in 2nd debulking as remaining cancer is small lesions but extensively spread.

3rd time I started with just Carboplatin but reacted to it, then just Paclitaxel (since February). It was mostly the same as 1st time EXCEPT I have neuropathy in the 3 middle toes. I’ll probably have to start Paclitaxel again after my current holiday.

Unfortunately chemo drugs are accumulative and 6 months is a long time if you are having weekly chemo, and bloods 2 days before the infusion. Don’t forget you can have a holiday from it, as I am doing. It’s doable so don’t despair.

Good Luck,

Iris🤗

[Mumsie13]

Hi Koyate. I didn't have surgery for 1st recurrence as it was too risky but I had 2nd line chemo last year. It wasn't the same combination as first line (carbo/taxol) and it was different for me than the first time which was relatively easy on me apart from some taxol related peripheral neuropathy. It may have been the new combination (carbo/caelyx) but I developed an unexpected side effect with the carboplatin which made me feel very ill about half way through treatment - low grade headaches, nausea and loss of appetite and unusually constant lethargy, none of which had previously been a problem. Apparently carboplatin is known to cause problems with magnesium absorption which I didn't know; it wasn't in the information pack and the pre chemo bloods don't test for mag levels - really? My magnesium was dangerously low - ended up in hospital having lots of magnesium infusions. I don't know why this problem with carboplatin manifested itself this time and not before. Could have been the particular combination or could have been that it was definitely fighting cancer this time whereas first time there was no visible cancer to attack. Also pulmonary embolism diagnosed halfway through chemo probably didn't help. I had a couple of weeks more break from chemo and then had last two treatments whilst taking magnesium supplements. I'm still taking them.

I now need more chemo and, yes, I am having carbo again with gemcitabine ; cancer is not actually resistant to it and they will be testing mag levels and treating when/if necessary now. I'm sorry this turned into rather a long answer. We are, of course, all different but I feel if you didn't have any problems last time and chemo is mopping up 'just in case' then you are unlikely to have problems this time, In my humble opinion. I wish you good luck with it this time but I'm sure you will sail through it. 🤗 Jackie

[testarossa71]

Hi Kouyate, I don't know which country you're in, but if you have access to chemo and he consultant recommends it, then please consider having it. They don't recommend it forgo reason, and it can be so effective at reducing the cancer, and delaying/stopping it's return (depending on which stage you have been diagnosed at, obviously).

I've only had first line chemo so far, so can't comment yet on how second line chemo might affect me, but I really would encourage you to take the offer to catch any little clusters of cells which might otherwise have hidden from your surgeon.

Wishing you well, whatever your decision.

Annie x

[delia2]

Hi. I didn’t have second surgery, just chemo. It was caelyx and carbo and I found it quite tolerable. No hair loss and I felt good three weeks out of the four week cycles. Good luck!

[Michelle-WSx in reply to delia2]

Delia, I’m about to start the same combo , I was told by my onc that it was fairly well tolerated and hair thins rather than fall out totally. Great to hear this x

[Ruebacelle]

Having had 4 lines they are all different but in general you can handle whatever they throw at you. Good luck from paris

[Kouyate in reply to Ruebacelle]

Hi Ruebacelle, does that mean your cancer has recurred 4 times? X

[Ruebacelle in reply to Kouyate]

Well let's see...after surgery and carbotaxol was in remission and on avastin for a year and a year later small nodule so carbo gemsar 12 weeks didn't work so then caelyx 6 times didn't work then taxol 8 months shrank everything and now have 2 small tumors and back to carbo for 3 times to see if it works. They don't know what to do w me. Next month starts my 7th year. A bit e xhausting mentally hugs from paris

[Kouyate in reply to Ruebacelle]

Wow, ur certainly going through a tough time, so sending you hugs too x

[Ruebacelle in reply to Kouyate]

It's a slog but I never have nausea did not lose weight have no gut issues or ascites but do have medical fatigue the lst week

[Tulips66]

Hi kouyate, sorry to read that you have recurred after 5 yrs free from OC. I am sure you had got to the stage where you felt a bit more relaxed & worried less about this dreadful disease. I unfortunately didn't get that much of a break. I had debulking 8hour surgery in March 2019 & ended up with an ostomy bag. After starting my first chemo infusion of taxol/carboplatin & Avastin 8 weeks after my debulking surgery I had more surgery for a prolapse. I finished my chemo July 2019 & continued on with the Avastin as maintenance till early Sept 2020. After having a Ct scan ten days later, the results showed it was back in my groin. I had an inguinal node dissection op early Dec 2020 & started chemo again in March 2021 exactly 2yrs after I started the frontline. I will be honest after flying through it the first time I have plodded through this time as my white blood cells kept been too low & I couldn't have the chemo. I was then put on Neulasta injections which have helped keep them stable. I have been getting the chemo every 3 weeks instead of the planned every 2 weeks & have 1 more to go before I have a Ct scan so 🤞the chemo has done its job. My advice is to take the chemo & give yourself the best chance of been cancer free again. You could be on different chemo than I am on which is carboplatin & Gemcitabine & you will hopefully get through it with no hiccups. I didn't lose my hair this time but have suffered with bad indigestion which I didn't have the last time. Everyone is different so go with your gut feeling & decide what's best for you. I wish you all the best with whatever you decide & please let me know how you are doing Xx

[Leniko]

I would do it.

[Artgreen]

It makes me wonder why they offer us expensive chemo yet won’t do a relatively cheap genetic profile on i or her tumours which could help find us a much more targetted and effective treatment.Wishing you the very best.