low platelets, carboplatin and gemzar

I had my first carboplatin/gemzar two weeks ago and was due for Day 8 second dose of gemzar last Tuesday. Delayed cause my white bloods and neutrophils low (no too bothered about these as I am going to have neulasta after Day 8). Last Thursday bloods showed white blood cells and neutrophils OK but platelets at 95 and my concologsit wouldn’t treat as under 100.

I expected to be OK today but my neutrophils are down again and my platelets down further to 70. Have got to wait another week for chemo. My careful plans around social life (planning for the good days) are in tatters.

Has anyone else had low platelets on this chemo (or any other?). What happened? I feel really worried cause this is my last really new chemotherapy combination. Still have taxol, maybe return to taxotere and pegylated anthracycline, but not much else. My most noticeable lump did a nice little soften up two weeks ago but I reckon its back to the same size now.

As most of you know my recurrence is this far ‘only’ showing in chest wall, neck, and shoulder nodes, but it is active and xeloda/vinorilbine worked only for a short time.

Any ideas? Any experience with platelets? I feel like I’m in a minority of one, being triple negative with regional recurrence and options running out. (I did have a nice chat with someone on the Cancer Bacup helpline this morning…she knew less than me about platelets but was very helpful about the emotional fall out of the rest.) I’ve never been so keen to restart chemo!

Jane

Hi Jane

Sorry to hear you’re having a bummer of a time at the moment.

I don’t have any answers I’m afraid for you but want to say that I hope you find the answers from other ladies.

A friend of mine is triple negative and although she thought hers was a regional recurrence to start with (it’s on her sternum) her oncologist has said that it’s a secondary. She’s having a huge operation at the end of this month to remove her sternum.

Have the hospital come up with any suggestions? I find that although my hospital is really good I always ask them for a print out of my bloods every 3 weeks and my lymphs are currently below the range but no-one has told me this and I wouldn’t have known that I need to be aware of not going near people with any lergy at the moment.

Good luck

Pinkdove

Hi Jane,

Have the hospital considered a platelets transfusion? It may be worth enquiring about - similar to a blood transfusion but with platelets.

Hi Jane

I think, from reading your posts, that you are like a secondary but will pm rather than put it on here.

Take care.

Pinkdove

Hi Jane,

My email is playing up a bit otherwise would have sent you one.

Sorry to hear about your platelets. I will do some scouting around among my friends on the same chemo as you and see if I can unearth any other suggestions. Could they not give you just the carboplatin or just the gemzar thus saving the other as a future option? I think this way would be a little easier on your blood though still does not get rid of the problem completely. I do know of someone else having them separately (not triple neg though) in order to try and eke them out a bit and I haven’t heard of anyone who makes it through their course without having to miss chemos because of low blood results.

I hope you manage to salvage some social life and are not worrying yourself half to death over it. I know these are pretty empty words really, but I wish you well, and better soon.

My scan was stable, by the way, so back to the xeloda for me. I had a week off it to go away to Northumberland and that was long enough for my hands and feet to recover, yay!

Jenny
x

Thanks Ann…you’ve sent me a whisper…but I can’t whisper you back for some reason (Interactibve Services Manager doesn’t fit in the box!)

Yes please…would like to see anything your nurse can tell me.

Jennywren Thanks for help. Yes giving them me separately might be an option…will see onc on Monday…I am being treated on the principle of try to keep it out of major organs for as long as poss. I know what that could mean for the future…but so few people to compare notes with. Good news on your scans.

Jane

Hi Jane

Just to let you know I have forwarded this thread to our nurses and will get them to reply as soon as possible.

Kind Regards
Katie

Thanks to Tara for your whisprer back message. I am posting this openly as I can’'t fit ClinicallNurseSpecialist into the whisperback box. I thought my response to your points might help other users.

Thanks for your suggestion that my oncologist may consider giving me just one of the drugs. I have now spoken to her and we are going to discuss this possibility at my next appointment on Monday. A woman on another site has told me that her platelets dropped too on gemcarbo and that sometimes the gem bit was missed out…good to know.

Thanks for explaining that a platelet transfusion would only be considered when platelets very low. I wondered about this. Mine aren’t that low at the moment!

Thanks for suggesting ways of balancing my social life and exercise, diet etc. I’m an oldtimer at all this…and I know the theory…its the practice which is harder! And the irrritation of not being able to buy say tickets to theatre etc cause your not sure when your good days are (I know when my good days are when I know when I’m going to have chemo…its when the chemo gets delayed that the tickets can go to waste!)

The feeling of isolation I mentioned is as much a political point as a personal one. I have an unusual cancer…triple negative…(about 15% of all breast cancers) and an unusual recurrence (regional…deemed incurable…with NED at present to major organs with some metastatic lymphodenopathy. Maybe 1-2% of recurrences are regional).There simply isn’t bog standard literature to help me…I have to search very far into google to get articles relevant to me. We are all different in our breast cancer, and I guess some of us feel particularly different. I did e-mail Emma Pennery about this a while back and intend to do so again cause I think there’s a real gap in BCCs literature and would like to help plug that gap.

Yes I have a Macmillan nurse (equivalent of) but don’t feel the need to see her often at the moment. My breast care and chemo nurses are great (chemo nurses as have private med insurance but get to see the BC nurse as well for sleeve etc.) I know far more about the treatment options for my disease than they do. I have a few tretatment options left but not that many…I’'ll be recyling them soon. And I have great counselling/therapy support…lucky there.

But I’ve still got cancer and it wont’ go away and its hard. Period.

Thanks for your help.

best wishes

Jane

Hi Jane,
I just wanted to add my bit - I’m so sorry your treatment is proving so problematical and mucking up your life, not to mention your future treatment prospects. I had a load of hassle on FEC and Taxol, with delayed treatments etc and I know how hard it is when you’re trying to plan your life around it and it all gets changed. It takes such energy and meticulous planning, and then it all goes to waste.
I’m glad you’re getting a chat with your Onc on Monday - things always feel so much better when there’s a plan - any plan! - and she surely knows all about what to do next.
Sending you a hug and all very best wishes for getting this sorted out.
love Jacquie

Hi JaneRA

I had a carboplatin cocktail called MV Carboplatin last year. I have had four different types of chemo over 5 years and I did find this one the most tiring of all. By the time I finished the 6 cycles my platelets were 46 I think?. I was annoyed as the hospital never monitored my bloods after the chemo course. It was only during the school summer holidays that I had enough feeling tired and not being able to take my son out for outings. I was getting really breathless and had panic attacks thinking my cancer had come back. It took me 3 weeks to convince my GP to give me a blood transfusion as I was so aneamic. After I had the blood transfusion I felt so good it was the best thing I had.

Like you I had all the chemo cycles set up on my calendar so that I could have a social life!. When I got to cycle 5th my bloods were under a 100 and I was begging my consultant to give it to me anyway ( I had planned that my last chemo would be before the week of the school summer holidays). In hindsight I am glad they did not give it to me as it would definitely finished me off.

The chemo worked quite well on my lung mets so it was worth it all. I pray that this maybe a good chemo for you. It may be a good idea to get a platelette transfusion in between the chemos to give you that extra humff!!

love Ripley