Hello, I'm a newbie. I've been following the site for a few weeks now but never posted before.
This is my experience with ovarian cancer....
March 2011 at the age of 46, I was finally diagnosed with stage 3 ovarian cancer.
I was put on 6 rounds of carbo/taxol followed by major debulking surgery/total hysterectomy. Followed by another two rounds of carbo/taxol. I then proceeded to have just over five wonderful years of remission where I continued to enjoy life as before. With just my six monthly checks ups with my oncologist.
October 2016 I saw a slight increase in my ca 125. Another test was done and this too had risen slightly. A ct scan was carried out in February 2017 which showed spots of cancer on my liver and in front of my spinal chord. I was referred back to my surgeon who did my initial operation with the idea of him operating before starting chemo. In the meantime, ( a few days after seeing my oncologist for scan results) , I noticed I had a lump in my neck just above my collar bone on my left side. I knew this wasn't good. I pointed this out to the surgeon on our meeting and he then referred me to an ENT specialist. I had the lump biopsied on 14th march 2017 and they confirmed it was cancer. It was the same as my previous ovarian cancer so it had spread some distance throughout the body and was now stage 4. Needless to say surgery wasn't an option at this point in time. So it was back to my oncologist to start chemo.
My oncologist decided to put me on carbo/gem regime. But as my veins were so scarred from my last chemo regime I decided to opt for a Hickman line this time round. I was very nervous about having it done but I'm glad I opted for it now. I had my Hickman line fitted on 7th April and all seems to be going well with it. I had my first round of carbo/gem on 11th April. And I must say it knocked me off my feet. I have felt so unwell and very sick all last week and really just not with it at all. Today has been the first day that I have been able to enjoy a nice cup of tea! Today was also supposed to be my day 8 of gemcitabine only. I turned up for my chemo appointment this morning to be told I needed to take another blood test as my neutrophils were low at 1.1 and they like them to be 1.5. I had my blood test and went for a cuppa to return a hour later for the results. The results weren't good. They had dropped even lower to .6 so there was no way I could have my chemo today. Obviously I was very disappointed. I haven't even completed the first course of this chemo fully and my bloods are already low. They have decided that I will now miss my day 8 of chemo and just continue on to my next round which now won't be until 5th May. They did say if I continued to have low neutrophils there may be an injection I can take to help. I am due to see my oncologist 28th April before I start my next treatment. So I'm sitting here resting, feeling very disappointed with myself for not being able to carry on with my chemo especially after only have one round of gem/carbo.
Has anyone else experienced a set back after just having one lot of gem/carbo?
Written by
Gdavo
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I haven't had this after one, it usually hits me wihen I go for my third round. It was said to me once by a lovely registrar, if its doing this to your blood, think what its doing to the cancer. That helped me focus. Rest up lots and hopefully it will be back up when you return to the clinic. Ann xx
Thank you Ann. Yes, I suppose that makes sense to think of it like that. I knew it had really knocked me about as I feel a bit spaced out of that makes any sense. Thank you for your kind words.
I've had issues with low neutrophils throughout both my original carboplatin/taxol combo and my recurrence (carboplatin/caelyx). I've not been on your treatment though.
I got to the point where I almost expected to miss a week, although it's so disappointing, particularly if you've actually made it to hospital that day only to be told whilst you're sitting waiting in the chemo ward. There are certainly injections available, although I was never offered this option.
I would tend to agree with Ann in her reply: it feels like it's working if it's knocking your "good" cells for six! When I discovered my chemo wasn't working after 4 sessions, I actually said to my oncologist that it didn't surprise me as I hadn't felt awful enough!! Perhaps not so funny right now for you - you do have my sympathies so hang on in there x
Thank you minard, for your reply. I just felt frustrated as I hadn't even got off the starting block to complete the first round of chemo before having a blip. Hopefully next time. Xxx
Hi Gdavo. There's not a lot I can help with here. I've never been on Gem. But one thing I'd like to say is that when I was on 6 doses of Carbo/Caelyx, I was having some dreadful side effects from the caelyx. My onc reduced the dose. The side-effects continued but were manageable after that. Good luck. Pauline
Hi Pauline, just receiving your reply is help enough. It's amazing how many different treatments there is out there that we are all on. And so helpful to hear everyone else's experiences. As you say, maybe my oncologist will alter my dose for next time. Hoping you and all the other ladies on this site are keeping strong. Take care, Gaynor xxx
I'm sorry to hear how rubbish the chemo makes you feel. It affects us all so differently. I am always amazed when people manage to carry on working through chemo treatment.
I've had 2 different types of chemo now. First time round was 9 years ago. I was very unwell and neutropenic on 2 occasions. The Drs reduced my chemo by 25% and I was able to continue treatment.
When I was diagnosed with ovarian cancer last year and started chemo in may I explained how badly the previous chemo had affected me. My onc really listened and she reduced my carbo/taxol by 20% . I still felt dreadful but I wasn't neutropenic. There were some question marks about low bloods but decisions were made to continue.
I think reducing volumes should be considered. perhaps you can have a conversation with your oncologist and see what he/she thinks?
Again, I always said that if the chemo treatment was doing this to my healthy cells, imagine was it was doing to the cancer.
yes I think that maybe the way to go with reducing the dose. I am due to see my oncologist on 28th April so hopefully she will have a solution. My sickness has gone and my tastebuds are back but my body feels totally exhausted and tired. I just couldn't believe how the (not even a full round), first round has wiped me out. Last time on taxol/carbo I coped fine until towards the very last treatment when it affected my bloods and I had to delay a bit. Hopefully just a bit of fine tweaking will sort me.
Hoping you a well,
Gaynor xxx
I had an identical experience to you with the carbo/gem. The difference was I was given a couple of the G-CSF injections to take then had the day 8 gem a bit late. Gem in particular is wellknown for assaulting neuts, so I doubt the wisdom of wait and see.
I had problems with them all through first line carbo. For lines 2 and 3 I was given the GCSF and had no delays. I found a couple pf days between day 1 and day 8 2 jabs and some point before next round carbo/gem 3 jabs kept me on the straight and narrow.
I'd try and get them to give you those rather than at this point looking at dose reduction.
That's very interesting to hear. The nurses did mention an injection to me at the hospital. Hopefully then my oncologist will say the same on 28th April. How did you find carbo/gem for you?. Did you manage to get any remission time? Hope you are keeping well now.
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