Gemcitabine

[AuntyOrange]

Hi fellow warriors I haven't posted for a while but am on here daily getting my fix of courage & love.

I'm currently being treated for my third recurrence. I've been on Carbo/Gem + Avastin since March. A few delays to treatment due to flu, covid, low neutrophils & low platelets. Just recently I had to have a couple of ambo trips to emergency due to intense abdo pain & I am currently in hospital (5th day) while they have been investigating the cause. It seems that Gemcidibine is the culprit . It is apparently causing my blood to "break up". I have had 12 doses since starting in Feb but it's only come to a head now. They call it MaHa (I can't remember the full name) and so far I have had 2 units of haemoglobin & 2 units of platelets + iv Sumac. Both my red cells & platelets dropped to very low. I'm feeling much better and now just being observed for a couple more days to make sure blood stays stable & pain has gone. Obviously my chemo combo will be changed but what to, hasn't been discussed as yet.

The reason for this post is just to give you a head's up in case you are on Gem & would like to discuss this with your team. We are all different & so drugs affect us differently and this may not happen to you but we do need to be aware of all possibilities.

Wishing you all love & light & of course good health.

Irene xx

[delia2]

Wow. I expected to have carbo/gem for my latest line of chemo but just had carboplatin. Gemcitabine sounds hard to tolerate! I hope they find something better for you. Was it working?

[AuntyOrange in reply to delia2]

Yes it was. 50% reduction after 3 cycles. Hopefully, whatever they decide to use next will be just as effective 🙏

[NewtonEmma1900]

I am so sorry to hear how badly you have been affected by gem.

I have just completed 4 cycles of carbo/gem for my latest recurrence, out of all the treatment I have had, this has been the worst. Really bad fatigue, low haemaglobin and almost complete hair loss. Hope that you are home very soon. 🙏

[AuntyOrange in reply to NewtonEmma1900]

Thankyou. Unfortunately my poop was black this morning so I'll be here for at least 2 more days to see if it improves. I have to be grateful that they are being thorough 👍💜

[Caleda4]

Hi Irene,

I have just had my sixth cycle of carbo /gem. It hit me on 4th cycle, had 2 blood clots in left calf,then on 5th round, red blood cells and white plus platelets all very low, so had a blood transfusion last Friday, and straight afterwards had a bad reaction to the blood with red blotches all over my body. I was antihistimine in tablet form then hydro-cortisone via a cannula. I spent 12 hours there but came hime during the evening. I am taking magnesium tablets to try and boost my energy advised by hospital. I have a single dose of gem next Tuesday if all is well and that is it. I can go on Avastin, but I am undecided yet until I speak with Consultant. Like you I was diagnosed in 2015, and this is 4th line chemo for me. I am 79, so obviously age has an affect.

Sending best wishes to you,and I hope that you will soon be home and feeling better. xx

[AuntyOrange in reply to Caleda4]

I'm so sorry that you've had to go through all of that. I hope it getseasier for you but it is an ongoing process. I was told that I should definitely not go back on Gem! It's true that the treatment can be worse than the disease. I hope the Avastin works for you, it's been ok for me in terms of side effects. I'm hoping for a nice "normal" poop today & I can go home. I was lucky with my blood transfusions & I actually feel quite well. Ready for another battle. 🦸‍♀️ Sending love to you 👩‍❤️‍💋‍👩

[Kaitlinsmum]

Hi, sorry you are having trouble with your treatment. I'm taking Gemcitabine with Cisplatin. I had a bad reaction to carboplatin. I have had a pleural effusion which the doctors tell me can be caused by the gemcitabine. It looks like that's something I will have to put up with whilst on this treatment. I'm also feeling pretty ill , fatigued and nauseous on these drugs. Just hoping to get through it with positive results. Good luck xx

[AuntyOrange in reply to Kaitlinsmum]

I wish there was a better way to live with this horrid disease. I just look forward to the times when we can put treatment behind us and have some "normal" times with family & friends until it raises its ugly head again. Life is worth the fight. Sending love to you 👩‍❤️‍💋‍👩

[win_56]

I only had one half an hour of gem and my platelets dropped to 5 so nearly none existent. Had an emergency platelets infusion.My oncologists said you can't have this ever again. I just had the carboplatin then. I was told by oncologist gem is very hard on bloods.

[AuntyOrange in reply to win_56]

A very good oncologist 👍. We are lucky that there are still drugs to choose from. With research getting better all the time, they will hopefully come up with even more. Carbo is a bugger too but seems to be one of the most effective ones out there. I've been having it (with other drugs) since first diagnosis in 2015. Good luck with the rest of the treatment. Sending love to you 👩‍❤️‍💋‍👩

[FlowerRose]

Lots of love from sunny Southern California 🌞 I hope you get through the bumpiest bits soon.

[Vegana]

I’m about to get gemc+ carbo plat .#5 next week. Every time it gets a bit worse.

I’m getting 2 zarzio injection prior to every Gem cycle, it gets my white warriors up so I don’t have to postpone it anymore .

But it’s a tough one!!!!

I hope this is my first and the last recurrence

Wishing us all the strength to continue the fight💪🏼🦾

[AuntyOrange in reply to Vegana]

Yes, I've had the injection to raise my neutrophils & it is tough. If they gave medals for courage to all of us warrior women, we wouldn't be able to walk with the weight of them haha.I wish you continued strength & also hope that you don't have to go through this again. 👩‍❤️‍💋‍👩

[Pianoplayer731021]

Hi, just sending my best wishes that you can get through these treatments. It sure looks as though you have been through a lot. Sending a gentle hug 🥰

[candyapplegrey]

Thank you all for sharing your experiences. Forewarned is forearmed although sometimes it seems the docs like to keep us in the dark. Hope you're able to leave hospital soon. xx

[AuntyOrange in reply to candyapplegrey]

I'm back home & feeling ok again. Hoping bloods stay stable & I can continue with my chemo (without Gem). I'm seeing Onco today, armed with a long list of questions. 😏