Experience w gemzar

[Ruebacelle]

Wondering if anyone else thinks its not worth it. Dont know anyone who took it w platinum based that had strong positive results including me who had 6 carboplat and 9 gemzars.

[Katmal-UK]

Ive had carbo gem and cisplatin gem and both times went back in remission x

[Mumsie13 in reply to Katmal-UK]

Is gemzar the same as gemcitab bine? I have to make a Choice soon between caelyx or gemcitabine with carboplatin for second line treatment. Still haven't decided and my oncologist is sitting in the fence. More or less said I should think which possible side effects I could live with - nice. I have the feeling it doesn't really matter at this point which one I choose.

[Katmal-UK in reply to Mumsie13]

Yes its the same. Ive had it for both recurrences.

[Mumsie13 in reply to Katmal-UK]

Thanks for the reply. Good to see this worked for you. Did you have any significant side effects with the gem? Does cisplatin have another name? I don't know what this is. I could guess it's another platinum based treatment. Jackie x

[Katmal-UK in reply to Mumsie13]

No significant side effects with gem other than nausea and fatigue but to be honest that was probably the cisplatin causing that. Basically cisplatin is a harsher form of chemo, a forerunner of carboplatin. I cant have carbo any more as I had a reaction to it.

[Mumsie13 in reply to Katmal-UK]

Thanks. That's very helpful. Still not sure what to choose. Perhaps I should just stick a pin in to choose😏. Consultant did say I could swap over if the one I chose wasn't working or I had problems. Decisions, decisions. Jackie c

[Katmal-UK in reply to Mumsie13]

Tough call, have you considered asking for a second opinion?

[Mumsie13 in reply to Katmal-UK]

To be honest I went from remission to significant areas of disease in the abdomen, pelvis, liver and spleen to say nothing of nodules near my kidneys and round the neck of my stoma in a very short space of time or it's been hiding. And that's not everything the scan threw up. Last ca125 was still around 30. Carcinosarcoma is a bitch to put it bluntly. It's rare, aggressive and there is no gold standard treatment. Very little is known about it. Treatment seems to be throw everything at it that works for other OC and hope it works. As for second opinion I wouldn't know where to start; where to find someone who had more knowledge of this cancer than my current consultants. Best bet would probably be Royal Marsden but as I live in Staffordshire that's probably not an option in the current climate. Sorry I seem to be venting - I must still be very angry at the delays and lack of response for nigh on two months. I have to work very hard to get the news that no-one wants to hear. At least I haven't been offered the life expectancy chat yet😯

[Katmal-UK in reply to Mumsie13]

Vent away, Im sure I and others would too. To ask for a second opinion try einging Ovacome for advice or contact PALS?

[Mumsie13 in reply to Katmal-UK]

Thanks. I might try that. They want to start chemo very quickly, now, so if I go for a second opinion it will delay treatment. I need to think on it.

[Amerthist in reply to Mumsie13]

Hi, I was diagnosed in August 2017 with 3c carsinosarcoma.

I wondered if you have been able to get much information about treatment and progression from your oncologist. My oncologist just says treatment is the same as for other ovarian cancers, it's so difficult to find information.

Hope your new treatment goes Well

Best wishes

Anne

[Mumsie13 in reply to Amerthist]

Hi Anne. Goodness, I seem to have hijacked someone else's thread. I really must post my own update soon. Nice to meet another member with carcinosarcoma - we are a rare breed. To answer your question, your oncologist is right. The treatment is the same as for other forms of OC. There is no gold standard for this particular cancer but carboplatin us considered the gold standard for most forms of OC. Try looking up carboplatin, Caelyx or myocet, gemcitabine and paclataxol in connection with treatment of carcinosarcoma. How you and the cancer respond to these drugs is very individual. I did quite well on carbo taxol as first line treatment, just some issues with neuropathy. Depending what country you live in the names may be slightly different. You ask about progression, I assume you mean disease progression. I was diagnosed a few months after you in 2017 with stage 3c ovarian carcinosarcoma. I have been in remission for about two years but was diagnosed very recently with extensive intra-abdominal disease recurrence which has also, to a lesser degree, metastasised to my spleen, liver and stoma. Let me be clear, progression is very different for everyone. I know someone with this cancer who appears to have had recurrence in the liver only. If you are still in remission after two years you are doing well. I don't know what treatment/surgery you have had or whether you suspect a recurrence but I would have thought your oncologist should be giving you more info than he has if you are considering further treatment. You should be making informed decisions. Try speaking with a CNS if you have one. I don't really know what more to tell you at the moment. Perhaps another more experienced member can give you more insight. I wish you well with whatever stage you are at at the moment. Take care. Jackie x

[Amerthist in reply to Mumsie13]

Hi Jackie. Thank you for your very helpful reply.

I didn't have surgery as in addition to the tumour I had nodules of cancer spread everywhere. The surgeon was willing to do it but said he would be unable to get it all and I may finish up worse off than I already was. After much thought I decide not to.

I had 18 weekly carbo/ taxol apart from a couple of bad reactions and some neuropathy it went very well. My last treatment was May 2018 and have had no further treatment just 3monthly scans. I am told it is stable. I know that this can't last for ever and I would like some kind of idea what would be the next line of treatment, the oncologist just says may be there will be a trial.

It would be good if there were some research into this particular cancer, but it's probably to rare to warrant the cost.

I hope your next treatment goes well

take care

Anne

[Mumsie13 in reply to Amerthist]

Yep, I wouldn't hold my breath for a trial especially not in the current climate. I had a large tumour but no evidence of further disease except that tumour was firmly attached to my descending colon, thus a resection which failed and then a colostomy. So I had a radical hysterectomy and debulking. I was actually Ned for two years but now I seem to be at something similar to your original stage and my ca125 was only around 30 a month ago. Surgery may not be an option for me this time round unless the nodules cause a blockage in my stoma. You should still have loads of options treatment wise as you started off on the same chemo as me and did well plus you should have all the other options offered to me. Then there are the PARPS. The BRCA+ ladies do better on these but they are now being offered to BRCA- to students as well. I don't know a lot about these and I think they would be further down the line. It's good to be prepared but I sincerely hope everything continues to remain stable for you. Jackie x

[Amerthist in reply to Mumsie13]

Thanks Jackie.

Anne x

[Mumsie13]

So sorry the gemzar is not working for you, you must be very disappointed. Hope you find something else that works. Thanks for posting this. I am looking at members experience with carbogem and carbocaelyx as I have to make a decision between the two for second line treatment. Can you clarify, is gemza the same as gemcitabine. Hugs. Jackie x

[TarbonNZ]

Gemzar is Gemcitabine. I had gem and carbo for second line and it Worked very quickly for me, which lasted for a period of 12 months. My understanding is that it slows the growth, however it also shrunk a lot of my nodules. Caelyx is a good drug also, and can be used by itself, or with Carboplatin. Gemcitabine side effects mainly relate to the fact it is very hard on your Bloods, and lowers the blood counts. This in turn means that you also get mouth ulcers etc. . I had three blood transfusions along the way, and had 1 treatment break. I don’t regret having this course of treatment. In NZ Caelyx is an unfunded drug, So I am saving that for last. While I have looked at funding one of the newer drugs, as I am BRCA negative, my Oncologist has said I am more likely to get a positive result from. Caelyx. There is only a small proportion of non Brca people who have success with the new generation drugs, and I see that from some of the people who are on Ovacome. Hope this helps. Therese x

[Mumsie13 in reply to TarbonNZ]

Thanks. This is very helpful. The nurse specialist called me this morning and we had a long chat. In the end I decided on carbo caelyx. It was difficult to choose so I went with the fact that carbo caelyx is administered once every four weeks as opposed to carbogem which is administered administered twice every 21 days. In today's climate it seems prudent to take the less frequent option and keep visits to the hospital to a minimum.

[Katiebairdie]

Thanks for posting your question as I was about to do the same thing. I’m due to see oncologist on 22nd and then starting gemzar. I now have all the answers I was going to ask.

[caf132]

I reoccurred in January. Was in long remission with first line carbo/taxol.

Went on Carbo/ Gemzar Avastin and I progressed even with falling CA125.

I felt the tumor after four rounds of chemo so it was stopped.

Not sure what to do. Surgery is out of question.

One doc wants to start me on Ifosfamide and Cisplatin while the second opinion want to get me in a clinical trial. He says more chemo is a shot in the dark. There is no tailored chemo for MMMT.

Good luck. Hugs,

[Hidden]

I had Gem & Carbo for my first recurrence. I finished it 14 months ago. I had a CT on Wednesday and I’m still NED. I had bad allergic reactions to the Carbo but I stuck with it.