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Starting Gemcitabine and carboplatin - anyone else??

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Member

Re: Starting Gemcitabine and carboplatin - anyone else??

I am starting this in the next week or two was diagnosed 7 weeks ago with secondaries & will be my 3rd chemo since diagnosis in July 2017 and now for being triple negative. Only go she’s treatment in May. Anyone had to cold cap for this and what’s the side effects been? X

Member

Re: Starting Gemcitabine and carboplatin - anyone else??

Hi ladies,

I have just started Gemcarbo treatment on Thursday.  This is my fourth continous chemo hsving alreafy had Capicitabine, Paclitaxol, Eribulin which worked for a while then progression continued in my liver.  I was diagnosed five years ago at which time it had already spread to my bones.  I had a double mastectomy as I had lumps in both breasts (even though I found only one on the right!). I had no chemo at that point and instead had hormone therapy.

In November 2017 they found mets in my liver and I then started chemo.

All this caught up with me by June this year and I stopped eating.  I was put on steroids in August whilst on a break from chemo and am now like an Ever Ready bunny eating well and gaining strength.

After my rambling on 😁 my reason for posting is, having had my first round of Gemcarbo, I wondered if anyone has had issues with constipation and sore stomach?  Not sure if this is caused by the treatment but was ok on steroids I was on.  Any tips would be gratefully appreciated.

Thanks and best wishes to all.

Lorraine

Member

Re: Starting Gemcitabine and carboplatin - anyone else??

How have you been?
Member

Re: Starting Gemcitabine and carboplatin - anyone else??

Hey how have been?
Member

Re: Starting Gemcitabine and carboplatin - anyone else??

Mooks, I was ok for my day 8 dose in the first cycle, but then had to wait nearly an extra two weeks for my bloods to recover enough to start cycle two. They are now prescribing the injections after the day 8 dose, but even with that, I've had some kind of delay every time, or had to miss day 8 out completely. I'm about to start round 4, and they're talking about reducing the dose for day 1 ,in the hope that I recover in time for day8!

It's very frustrating, but it is extremely common with gemcarbo, and it doesn't mean you won't be benefit from the chemo, they just need to adjust the doses and timings to find what's right for you. Hang on in there!
Member

Re: Starting Gemcitabine and carboplatin - anyone else??

That’s good to hear x
Member

Re: Starting Gemcitabine and carboplatin - anyone else??

I started Gemcarbo last Friday. Today I had bloods for day 8 gem tomorrow. Bloods are too low. Can’t believe this is happening in the first dose.
I’m triple negative stage IV with mets to liver, lungs & spine.
Member

Re: Starting Gemcitabine and carboplatin - anyone else??

Same for my the christies for me it's not the traveling it's how long you wait when I was going b4 went getting home till 6 all day there is a pain hoping it shrinks or gets rid of these nodes there only tiny so fingers crossed
Member

Re: Starting Gemcitabine and carboplatin - anyone else??

I'm about 40 mins drive from the hospital with a chemo unit, so it's not bad really, only you can't ever park so hubby always has to drop me off and then spend anything up to an hour queuing for a parking space, or go home and come back again!

The first dose of gemcarbo definitely worked for me, the lumps shrank noticeably. Which makes it all the more frustrating to have to wait longer for the next dose!!
Member

Re: Starting Gemcitabine and carboplatin - anyone else??

Hi Tatyana don't no where you live but we have a macmillan unit but it's just this carbo that is stopping me having it there but spoke to my breast care nurse and she gone have a word with my onc fingers crossed x how are you doing hope it does the trick that's all that matters x
Member

Re: Starting Gemcitabine and carboplatin - anyone else??

Hi Pinkaboo,
Yes it is said to be very effective, I guess we just have to put up with the annoying trek to a more distant hospital, I do wish I could have it at our little local hospital!
I'm like you, I'm supposed to get two weeks of treatment then the third week off. In practice weeks three and four have been and gone and I still haven't started the next cycle, because my neutrophils were too low. Next week, fingers crossed!
Member

Re: Starting Gemcitabine and carboplatin - anyone else??

Hi my sister in law is on this and she says it's fine she doing well she got it in bones liver and kidney and it's doing it's job x
Member

Re: Starting Gemcitabine and carboplatin - anyone else??

Hi Tatyana I have my first on the 20th then 27th then I think a week off if I'm reading it right was hoping to have my second cycle at my local hospital but because I have had carbo b4 they said you are at a higher risk of a reaction was fine last time gutted it's one thing after another but hey heard it's a very affective combo so if needs must xx
Member

Re: Starting Gemcitabine and carboplatin - anyone else??

Hi Pinkaboo,
I've had one cycle of gemcarbo, it wasn't bad at all! I had IV steroids as premed and two days of anti-nausea and steroid tablets after, but no injections. That was only for the Day 1 stuff when you get both drugs. Day 8 is gemcitabine only, no steroids and only anti-nausea tabs to take home just in case, which I didn't need.

Felt a bit groggy on days 4-5 when the steroids wore off, but otherwise fine.

Unfortunately by day 21 my blood hadn't bounced back enough, neutrophils were too low, so I had to wait an extra week for round two. Crossing my fingers for tomorrow!

When's your first dose? Good luck, it's really not the harshest chemo as it goes, you'll be fine!
Member

Re: Starting Gemcitabine and carboplatin - anyone else??

Didn't ask will I need steroid jabs after each cemo
Member

Re: Starting Gemcitabine and carboplatin - anyone else??

Me to got secondary in nodes triple negative starting gem and carboplatin next week worried
Member

Re: Starting Gemcitabine and carboplatin - anyone else??

Hi everyone,
Just bumping this thread up a bit, as I'm about to start gemcarbo and would love to know if anyone else is on it! Cheers.
Community Champion

Re: Starting Gemcitabine and carboplatin - anyone else??

Hi Joyintn

Glad to hear that the recent scans have shown this combo is working for you. In my experience on this forum there’s not that many of us who have had this combo, obviously there are few ladies on it at the moment, so you may not get many replies as to how many chemos are available to you. You don’t say (or I’ve not read back far enough, in which case, apologies) what you have had in the past so it’s difficult to mention other chemos that could be used as you might already have had them. Wishing you continued good results and hopefully someone else may be able to advise better than I have.

Nicky x

Member

Re: Starting Gemcitabine and carboplatin - anyone else??

On my 7th month on GemCarbo. Scans in late Jan. No spreading and multiple lesions have decreased. Anyone know in the world of chemo....am I nearing the end of possible other chemo meds?

Member

Re: Starting Gemcitabine and carboplatin - anyone else??

Hi all, I’m new to this forum but I started Gemcarbo today, it’s my 4th Chemo so I’m interested to hear how others are getting on?
Xx
Member

Re: Starting Gemcitabine and carboplatin - anyone else??

thank you Carolyn52 xx
Member

Re: Starting Gemcitabine and carboplatin - anyone else??

Hello alley cat

Welcome to the forum ...I have no knowledge of this chemo but wanted to just say hello and hope there will be some ladies here that can help out with advice.

Hugs xx
Member

Re: Starting Gemcitabine and carboplatin - anyone else??

Hi I started this combo on 31st October and next week will be having my second cycle.  I find it very scary when you read what others have experienced.  I have lots of mixed emotions at the moment which I guess most of you have been through or are going through.  I had breast cancer 6 years ago and got the all clear but this time it has come back on the same side but spread to my lungs.  I am so scared but trying to stay positive.  Hope the chemo is not too bad I have only felt a little nauseas and have had a few days of fatigue.

Member

Re: Starting Gemcitabine and carboplatin - anyone else??

Anyone currently on this combo, thought I'd bump the topic as im starting it on the 8th, any advice or success stories on this would be welcome. Its my 4th chemo since March 2016 and 6th over all, starting to panic my options are decreasing rapidly. X πŸ˜•

Spoiler
 
Community Champion

Re: Starting Gemcitabine and carboplatin - anyone else??

Marnster,, Yes, I was shocked after 8 months to have such a bad reaction and over night!  I had taken quite a few chemos by this point and always had a laid back acceptance. Never have had any serious side effects and certainly never thought of having one at 8 months. Hubby and I both thought the cancer had suddenly got the best if me. The positive was, that the cancer was ok and it was just the drug. I also had a friend have a reaction to this drug with eternal bleedieg. I will say he had bad reactions to everything! I just wanted to make you aware! Glad you understood to just pay attention. I guess really we should be on the look out all the time. Just remember we are all different! I hope you have a smooth run! FF

 

Btw I just looked up and my kindle had changed your name to "marinated" . Fixed it!!

Member

Re: Starting Gemcitabine and carboplatin - anyone else??

Hi Mollymop and Funnyface!

 

Thanks for letting me know about your experiences with gemcitabine and carboplatin. I will definitely be on the lookout for any signs of toxicity and make sure I take them seriously. I have read of a few people having a toxic experience quite a while into the treatment, e.g. 7-11 cycles into it they have an allergic reaction to the drug. It seems quite weird and unexpected because you would be thinking, if I'm allergic, then I'll have a reaction to the first treatment, not the seventh!

 

It does sound like it should be very doable. I'm hoping to keep active walking my dogs too and am hoping that will help keep the fatigue at bay. Happy to give my body the rest it needs, but don't want to be tired all the time.

 

Stay in touch and let me know how you're going.

Community Champion

Re: Starting Gemcitabine and carboplatin - anyone else??

Marnster and Molly,

 

I did not have this combo, but did gemcitabine as a single agent. It only worked for 8 months and then I had a toxic reaction to it. We went away for a weekend camping of all things with an outside for a bathroom. I all of a sudden couldn't breathe right. I couldn't even walk the 54 feet to the out house. Hubby drove me to it. I coukdn't even get my socks and shoes on. I was gasping for air. We went home on Sunday and on Monday my oncologist said to come in immediately. I had to stop the gemcitabine and he gave me a month off treatments to heal. I had to go on O2 for the month. My friend took one dose of this and had internal bleedieg and was air lifted to a big hospital in Philadelphia. I know this could probably happen with any of our drugs, but wanted to warn you to pay close attention and don't mess around with side effects! I do know that the toxic reaction with this drug is quite common. FF

Member

Re: Starting Gemcitabine and carboplatin - anyone else??

I have had 3 cycles of GemCarbo, number 4 is on Tuesday.  I am in my fifth year since diagnosis (fourth with secondaries).  I had two long runs on Cape and Taxol which kept me stable.

 

For cycle three the anti sickness was changed to Domperidone and the steroids (Dex) were halved and I felt fine, no sickness at all.  I have an active lifestyle and walk about six miles a day with my dog.  I have not had any fatigue on this (or any chemo actually) however I have had two blood transfusions recently, have managed to avoid them until now!!

 

My hair is growing back too - have not had hair for two years so should be interesting!!

 

It is definitely doable, nowhere near as bad as I anticipated, I hope you have good results on it xx

 

 

Member

Re: Starting Gemcitabine and carboplatin - anyone else??

Hi all - I realise this is an older thread but I thought I'd bump it up to see if there are any others currently on the gemcitabine/carboplatin regime who want to share their thoughts. 

 

I am about to start on this regime on 11 April so I'm interested in any advice, tips, experiences, etc. It would be nice to support each other while going through treatment and share our stories. 

 

From what I understand, it's pretty hard on your white and red blood cell counts. My doctor said I might need to have some blood transfusions from time to time to get my red blood cells back up. Fatigue will be the most common side effect, risk of infection because of the low white blood cell count, but hopefully no nausea and hair loss. I've been pretty fortunate with nausea with previous chemo treatments (AC, Taxol, Capecitabine, Eribulin) so I'm reasonably confident it won't be an issue for me. 

 

Hope there are others out there wanting to chat!

Community Champion

Re: Starting Gemcitabine and carboplatin - anyone else??

.

Hi Sharon, I have just finished my third cycle of Eribulin.
its given on day 1. Then Day 8 then a rest week


Cold caps and Eribulin.

my hospital does not use the cold cap for that chemo as there is no evidence it helps.. i was quite depressed when i began, as Dad had just died...so they did let me try..but it didnt work

 

The other thing is, the cold caps, were run on a machine which keeps very, very, icy cold air circulating. It has to be on 1/2 an hour before the eribulin is given and remains on for around an hour afterwards...my hair was already thin and the cold was almost unbearable. The whole process took almost two hours from start to finish. After the first cycle, I opted to not have it as I was feeling better in myself. Nowadays, im in and out of the i/v room in about 20 minutes.

 

If you do opt to try the cold cap and they allow it....you need to take with you.

1/..baby spray hair conditioner, as they damp the hair down before putting on the tight cap.

2/ a head band to place round the edge of your head to protect the skin at the edges.

 

wether you go for cold cap or not, be very kind to your hair, use baby shampoo and conditioner- or actually I use Simple shampoo and conditioner. Dont vigorously rub your scalp, just pat and smooth each product on gently and shower it off. I dont wash mine very often, i let it dry itself and dont brush it...I just gently comb it once a day.  three cycles down the line, my head itches, I run my hand through my hair and about 8 hairs come out each time. I have had it cut short. So as to lighten the weight of it. Nb. When i first had chemo years ago, i made the mistake of vigorously massaging and my hair clumped in a large tangled mess and fell out.....very upsetting.

 

my experience of Eribuln.

i was started on a 60% dose, as my liver function results were very high.

 

Sore Mouth

My first cycle, i had a sore mouth for a while, i rinsed with bicarbonate of soda, about a teasp to a cup of water, and it really helped. The soreness went away. Dont swallow it, but you can gargle with it. Some people think rinsing your mouth after every meal is helpful. Use a soft toothbrush.

 

Anti-emetic prior to chemo

they give this as a matter of course, 30 mins before the Eribulin. I found that once on the drip i started panicking and feeling claustrophobic. this last week, my staff nurse said she had noticed a few ladies getting panicky when they had the anti-emetic and asked if I would like to try it without. I did try it without and I was fine, no panicking at all. I also found I didnt need anti emetics afterwards.

 

Immunity

My white cells fell quite rapidly, Eribulin is well known to do this. I got very tired indeed on days 2 and 9!
I now have Filigrastin injections to keep my white and red cells up and as a result, have felt very well and less tired.

Constipation,

Even tho I drink 2 litres of water/diluted juice a day, it still makes me constipated. Recently got some movacol from the gp.havent tried it yet. Feel less hungry too.
Hopefully this 'essay' might be useful to you Sharon and Helen too. There is also a thread about general preparation for chemo under 'treatments'

 

love and hugs. moijanx

 

Member

Re: Starting Gemcitabine and carboplatin - anyone else??

Hi moijan I'm starting erubulin in about three weeks time..any tips or anything else about it appreciated ..thanks Sharon
X,❀
Member

Re: Starting Gemcitabine and carboplatin - anyone else??

You give me hope, thank you, stress head! To be a survivor after 5 chemo's, brilliant. Must be a positive thing xxxxxx
Member

Re: Starting Gemcitabine and carboplatin - anyone else??

Will,ask about that next time I see onc, Moijan, thanks! X
Member

Re: Starting Gemcitabine and carboplatin - anyone else??

Morning ladies out there! Had day 1 of cycle 2 yesterday after having successful procedure on Monday to have port fitted ( third time lucky after bloods not being good enough!) so feeling tried but ok, quite upbeat as I didn't want to have a long gap between treatments. Last time, it was the day8 gemcititabine that made me very weary for at least four days....unlike me to be inactive, but I felt I couldn't get off the settee! Hair seems to be beginning to thin a bit and my taste buds are definitely changing, affecting food choices. Don't like the steroids I have to take....making me have a moon face and eating is at the forefront of my mind, even though it tastes odd! Anybody the same? X

Member

Re: Starting Gemcitabine and carboplatin - anyone else??

Hi mags...i have had 6 cycles of carboplatin. My onc didnt want me to have gem as well as they are both ery toxic apparently. I have had the odd day of nausea but no hair loss, have felt weak at times but always seem to be tired. I have just had a really bad bout of sickness but think it was a bug rather than chemo s/e.

My platelets dropped to borderline after cycle 5 so had to have reduced dose but apart from tht have coped well. I have tnbc...skin, pleural and bone mets. My onc is making me have a break from chemo now...have had 5 in 2 years....so am getting very scared. Overall it was certainly do=able...i'm sure you will be fine. x

Community Champion

Re: Starting Gemcitabine and carboplatin - anyone else??

Hi Mags and Wesh girl, good luck with the chemo and any s/e.

 

 

am not on that regime, but I found that filigrastin injections have been helping me...i suspect its the reducedwhite and red cells that add to the tiredness..i was shattered on my first cycle of Eribulin and now feel pretty great with the added filigrastin..worth asking about.

 

Moijanxx

Member

Re: Starting Gemcitabine and carboplatin - anyone else??

Hi Mags! So far the overriding side effects has been tiredness. Feel weak compared to when I was on previous chemo cycles last year. No hair loss, a bit of odd taste regarding food and drink, poor sleep pattern ( maybe blame steroids for that) but overall not too bad. I have a day 1 then day 8 then start agin on day 21 for 6-8'cyles. What are they planning for you? 

Member

Re: Starting Gemcitabine and carboplatin - anyone else??

Hi ladies, I'm on these two at the mo, statrted the first cycle four weeks ago but low bloods have stopped me having cycle 2 at the mo. Waiting to have a portocatheter down so that bloods can be take/ chemo infusions etc easily as my arm veins are shot ay from previous chemo! Got  sec tnbc diagnosis almost three months ago with the little buggers spreading into my lungs. I had lumpectomomy, chemo and rad which ended March, recent diagnosis from a CT scan in May.

Member

Re: Starting Gemcitabine and carboplatin - anyone else??

Hello mags
Welcome to our little family ..hope you get some good advice from the more experienced ladies here but I will send you some hugs xxxxx
Member

Starting Gemcitabine and carboplatin - anyone else??

Hi all, I have secondary breast cancer and have just been told that I need to start this new regime of chemo. Is anyone else on this? Any advice, any info on how it affects you. Can't say I'm looking forward to this- reading about the side effects- doesn't sound like fun.πŸ˜•πŸ˜•πŸ˜•