Hello all again. Sorry if all these posts of mine are a bit of a pain but I'm just trying to find out as much as I can and this forum is really helpful.
I've just come off the phone with my wife's nurse and she tells me that if my wife is suitable for treatment then it will be carboplatin once every three weeks. It's not a term I'm familiar with but I understand it is a form of chemotherapy given intravenously.
The list of potential side effects is long, daunting and in some instances quite frightening. I'm wondering if anyone here has any experience - whether bad or good - they are willing to share.
My wife has always maintained she won't undergo chemo though of course she may change her mind after her consultation and all the facts are laid out in front of her. It also may well be that she is not physically strong enough to receive treatment. We won't know that until her consultation but I'd like to be as clued up as possible.
Thanks
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scotleag
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Everyone responds and reacts differently to chemotherapy, and they will check your wife's bloods to ensure she is able to have the chemotherapy.
Hope you hear from others in the forum who have had experience of this chemotherapy. This link will take you to our booklet on chemotherapy, which you may find useful: roycastle.org/app/uploads/2...
Chemotherapy is usually given every 3 to 4 weeks and there can be between 4-6 cycles.
It is understandably a stressful and distressing time for you all and if you would like to discuss anything you can email ask the nurse at lungcancerhelp@roycastle.org or call the free phone nurse led helpline number on 0800 358 7200 Monday to Thursday 0900- 1700 and Friday 0900-1600
I had cisplatin and permatrexate at the start of my treatment. I think cisplatin is a bit like a cousin to carboplatin, I also think but maybe wrong that carboplatin is slightly less toxic. Obviously everyone is different and responds differently. I had one cycle every 3 weeks for 4 cycles and for me it really helped knock the cancer back and showed big changes in the scans and allowed further treatment options afterwards. I was given an average of 10 months to live and am still here 8.5 years later due to advances in treatment and being fortunate to respond.The first two weeks of every cycle were tough then I had a good week before the next one. Then a bit of a break after the 12 weeks. Some people I know found the treatment a lot less toxic than I did and continued without too many problems, others were like me. Obviously no one wants to feel unwell, but seeing the work that these drugs can do and the changes that can be made with scan results can be amazing. Definitely an individual decision though. I tried to keep hydrated during my treatment, also had lots of support from Consultant, Lung Nurse and Community Nurses to help with side effects so meds for nausea, constipation etc
That's very encouraging. Thank you. I note in another post you say you were at the hospital for eight hours each time. Is that the usual procedure? I suppose I had some naive notion that because it was intravenous there may be a couple of hours monitoring but wasn't thinking of a full day.
Am not an expert but had to have flushes where they flush out the tube to clean it, also salt type infusions between the chemotherapy ones and two types of chemotherapy on the same day. Gaps in between these too waiting for things to be set up etc. Everyone different though in how long it lasts, type of chemotherapy. I know definitely mine linked in the height, weight and dose that they wanted me to have.
We found the best way to manage a treatment day was to block out the whole day for treatment. Then you don’t get frustrated with delays which might be delays starting on the day, due to complications with other patients treatments etc. Delays with chemotherapy arriving. Seats not being available on time because of other patients having delays. Busy pharmacy with meds needed to help with side effects and possibly delays there. Take a newspaper, quiz book, iPad, book and let the time go by. Also food and drink make the day as easy and comfortable as possible.
Your wife’s experience might go like clockwork, but I would say blocking the day out will make it easier and kinder to you both
Thanks. We already block out the day as we have a 40 minutes train journey then another 15 in a taxi to get to the hospital (and obviously the same back). It's more the amount of time spent in the hospital that's concerning. Today it was almost seven hours from start to finish (though a lot longer door to door). We always leave with a book and fully-charged phones.
We were similar, it’s an exhausting process. An hour and a half drive each way and sometimes leaving the hospital after 9 or 10pm at night. It’s definitely not an easy way to spend the day and stressful too. I found it useful to have a bed for my treatment, hope your wife has a bed too as makes it more restful. We found it exhausting though and we’re more able to prepare for it once had had first cycle as better idea what to expect but not predictable. Quiet days either side. It is a challenge
The community Macmillan Nurses were also very good with support and visited me at home. Links with hospice also excellent for managing symptoms. Hospice can sound like end of life care for people but they have a whole range of skills to support on this journey which in my experience I would say not to overlook. They also have the time and space to get to know you as a person and your partner and work out how they can best support
Obviously everyone is different but after my 12 weeks I then went on to a different maintenance chemotherapy for 9 or 10 months. This was a permatrexate one and a totally different experience. The first infusions that I mentioned earlier took place over an 8 hour day once every 3 weeks for 4 sessions and I had a bed for the day. The next maintenance ones were a 20 minute infusion every 3 weeks and in comparison didn’t feel like treatment and my quality of life was so much better. Holidays and trips out etc.It definitely made me aware that chemotherapy is very varied and everyone reacts differently and that treatment length times are different too. A whole new world that you don’t want to know about until you need to, but there is also research going on which is really helping with lung cancer too and that’s so important
Hi ThereThere’s some great responses already but just to add my husband’s experience. He had carboplatin and another chemo (and 2 immunotherapy drugs). 4 cycles, three weeks apart. He found it much easier to tolerate than “advertised”. The nurse said to us that no one gets all the side effects. And my husband didn’t get any of the major ones.
I’d also second what Bow-19 said - I think the chemo knocked back the cancer really quickly. Within 2 cycles, we could tell the cancer symptoms were easing, noticeably the cough.
Hope that helps and your wife is able to make the best decision about this she can.
Thank you. That's good to hear. I'm hopeful my wife will go for it as it's far less intensive with regard to hospital visits as feared. Fifty-odd miles by train and taxi is tiring enough but once every three weeks is a big difference to once a week or more.
Of course all is dependent on what is discovered from today's guided needle biopsy. But provided nothing worse is discovered and also provided my wife's physical condition doesn't decline significantly her specialist nurse reckons this will be the regime followed by immunotherapy for two years if it's effective.
The very mention of 'two years' certainly lifted my spirits though I can't speak for my wife as she's just so worn out after today. Not by the biopsy itself which she felt was fine but the sleeplessness and travel on top of her already weakened condition. But we now have eleven days to read and absorb everything we've received from the hospital before her consultation.
Just hoping now that nothing is uncovered which might impact adversely on her treatment.
Hi scotleag how are you both doing? Its clearly hugely draining for you both at the moment.
I just wanted to add some reassurance about the "2 years" plan with the immumo. My husband is now 18 months into his treatment (1st 3 months were chemo + immuno, now just 3-weekly immuno infusions - they take around 2 hours). The list of potential side effects of the immunotherapy is long and daunting, but he has literally no side effects from these drugs at all.
Also, after 2 years, its not "the end" so to speak, it is believed that 2 years is enough to 'teach' the immune system to recognise the cancer on its own, so that is why its a 2 year treatment approach. Many people do very well on these new drugs and are living many many years with lung cancer.
Thank you very much for this and all best wishes to you and your husband. It's heartening to read how well your husband responded to this treatment. My wife has her consultation a week tomorrow when we will find out if the treatment can go ahead or not.
My husband has just finished 4 cycles of carboplatin (infusion) and vinorelbine (pill).He was fine for the first 2 cycles, the third cycle he had 1 day in bed (watching a day of various sport that happened to be on) from just tiredness and the last cycle he had a couple of days in bed due to fatigue and felt very tired for a week or so after. He had an afternoon nap most days but went for a walk most days too. He had no sickness at all and has actually put on a few pounds from over eating in anticipation of feeling ill and not being able to eat which never materialised. Good luck x
Hi scotleag, I had 4 cycles of carboplatin alongside another chemo and immuno earlier this year for 4 cycles. Not a pleasant treatment but also not that bad. Personally I had nausea for few days every time at beg of cycle but anti nausea drugs help, had awful constipation and tiredness and loads of little discomforts but all in all not that bad and had good days in and between.. The good news is that it did the trick and after that the following scan was clear. Considering I had been given 6-9 months without treatment it is quite a success. Would recommend it to your wife as even if tough it still works and 3 months of cycles are worth it
Good morning, I am currently on carboplantin as well as two other's one being immunotherapy. I have only had one cycle my next is Tuesday, apart from some nausea and constipation I have been fine so far 🤞 still working full time but have been told that the fatigue will build the further we go so do expect to loose some time at work. Wishing your wife good luck and sending positive thoughts x
I also had Carboplatin, along with Pembrolizumab (and pemetrexed for the first 3 cycles). As everyone else has said, everyone is different, main side effect I experienced was tiredness for a couple of days after the steroids stopped and constipation. That said, there is a massive support team to assist, so if anything doesn't feel right or too severe, they will assist you immediately. I also like other people had a really good response to this treatment. Wishing you both all the best x
My wife's been given information on Pembrolizumab but on a separate document from Carboplatin which is listed alongside Pemetrexed. We haven't read these as we had to get up at 5.30 am after only a couple of hours sleep to make sure we got to the appointment on time and didn't get home till 5.00 pm. So neither of us felt up to reading the information given and to be honest we'd probably forget it pretty quickly as we're both pretty shattered.
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