We have been for a 2nd opinion at a private hospital in london & have found an amazing dr who was honest but positive with us. He told us surgery would never be a option as there are 2 lymph nodes involved so can not be cut out without the risk of leaving small cells of cancer BUT he still believes he can cure my mum with chemo and rapid radiotherapy as long as the tumor can shrink by 25-30% (it is currently 10cm) so we are now praying it will shrink and my mum can still be cured!
The heartbreaking thing was he told us if my mums x ray was not missed a year ago my mum would of easily been cured :'( BUT we can not change that now but need to concentrate on the fact there is a 30% chance of being cured still.
We still have not started chemo as we are having that done on the nhs and they have to order it! But hope to be fitted in this thursday if not the following thursday.
She will have 4 rounds of cisplatin & gemcitabine then hopefully tomo therapy.
Has anyone had any experience with these?
What side effects did you have?
Wishing you all health & strength!
Reply # - August 4, 2012, 08:31 PM
That certainly sounds like a reasonable plan. Cisplatin and gemcitabine is certainly a good regimen for NSCLC, and I've seen some very favorable results. Tolerability is variable -- some of my patients have really done well and not had too much fatigue or nausea, but others have struggled with these symptoms. Unfortunately, there's really no way to predict how someone will tolerate treatment except by trying it and seeing directly.
Reply # - December 9, 2012, 02:06 AM
My husband to is about to start on the same regime.
He was diagnosed with stage 3a squamous non small cell carcinoma in his right upper lung with activity in several of his nodes (7cm tumour) on 7th November 2012.
We have had two options one was to do chemotherapy followed by radiation. Not sure of the drugs they were going to use as we have opted to go with the more aggressive approach given my husband is only 55 and in very good health and extremely positive.
21st December will be his first course of Cisplatin and Gemcitabine and the plan is to give it day 1, day 8 then 1 week off and then start all over again. So that is a 3 week cycle. The plan so far is to do this for 6 weeks then do a CT scan and see if this treatment has shrunk the tumour at all and if results are good then another 6 weeks will follow.
The doctor said it will take 4 hrs to administer the chemo and that an anti nausea drug would be administered first.
Then if all is as the doctors plan/hope for he will have surgery.
They are hoping that within 6 months he will be cured, that is if everything goes to plan.
My husband is hoping to head off to work on week 3, we are not sure if this will be possible as yet.
He's been told that he should have no hair loss, very minimal nausea, low blood count which will increase his chance of infection by 5-10%, tiredness, constipation.
Both of us are looking forward to getting on with this as we know there will be a positive outcome.
Here's to positivity!!!! :-)
Reply # - December 9, 2012, 11:33 AM
Hear, Hear! Here's to a positive outcome!
FYI, the chemo nurses are great, use them, they'll come to know your husband. Stay on top of the nausea and follow directions just a described (ask for specifics on how and when to give when given a prescription) there are different ones given after nausea has set in or before. By accident I found that when taking an anticipatory nausea drug (given before he feels bad), give it to him while he's still in bed about 20 or 30 minutes before he gets up. It worked great for my husband.
Keep us posted and don't hesitate to ask questions when you have them.
Reply # - December 9, 2012, 04:15 PM
Thanks Janine for responding to my post.
It's so great to know that people are out there who understand what we are going through.
We're very lucky that we have a Naturopath who is also an oncology nurse who specifically when in to the natural side of things after seeing what some of these drugs can do and wanted to be able to support her patients in a beneficial way. So along with listening very closely to the oncology nurses who will be caring for my husband I also have her to run things past. Can never have too many positive people helping you navigate this unfamiliar path ahead I think.
One small question:- My husbands Oncologist said that outwardly we shouldn't see too much of a change! I ask this as we have 4 grandchildren who are not aware of what is going on at the moment as we felt they were to young to understand the situation. With Christmas just around the corner and my husband having his first treatment on the 21st from what you've seen with your husbands treatment do you think he'll be able to handle Christmas as everyone generally stays at our place.
I will most definitely keep you posted as things progress.
Reply # - December 9, 2012, 05:01 PM
It's difficult to say how any one person will respond. Some people breeze right through and some get knocked down pretty hard. You might want to talk to the oncologist to see if waiting until the week after Christmas is an option. Usually a week doesn't make a lot of difference.
A platinum doublet such as your husband will receive can be challenging. I wouldn't want the prospect of having lots of company 4 days after my first infusion not knowing how I'll react.
Reply # - October 17, 2022, 05:30 PM
My mum was diagnosed with advanced Stage 4 bladder cancer in 2017. In December of that year she started the chemotherapy Gemcitabine and Cisplatin (GemCis) in the hope that this would shrink the tumour in order to have a radical cystectomy (Bladder removal). This was our families first experience with chemo so we was all very scared about the side effects and if my mum, who was 70 at the time, would be able to cope with it as the oncologist warned us that this chemo is strong and can be very tough to deal with.
My mum began her treatment just a few days before Christmas and was pleasantly surprised at the fact she didn't feel any effect of the chemo at all really. We was able to have a good christmas, without any bad effects of chemo. The anti sickness drugs, that are administered at the same time when you get the chemo, are very good, so good that it basically takes away sickness all together.
Fast forward around 2 or 3 weeks into new year and my mum was admitted into hospital with pain, which turned out to be kidney stones, nothing to do with the chemo.
A major worry though is that they noticed my mum had pretty much no white blood cells, which the chemo had caused, this meant that they gave my mum a room on her own to keep her safe from infections.
Scan results showed that the tumour had shrank significantly and so was able to jump straight to surgery without finishing the full cycle of chemo.
My mum's cancer was diagnosed very late and was an aggressive type, and after two clear scans, the cancer returned, my mum died peacefully in 2019.
For anyone who is about to take this chemo, the effects of it are tolerable and i'm sure many people can get very good results, the main worry is the white blood cells, but a healthy diet can help with this also.
Reply # - October 18, 2022, 01:28 PM
Welcome to Grace. I'm so sorry to know about your mom's passing. Cancer is such a nasty disease. Thank you for taking the time to add to our forums. It's so helpful to hear from others who have been through or cared for someone who has been through this. Cisplatin can be difficult and can drop white blood cell counts dangerously low though it's not as bad as some. I'm glad she otherwise managed chemo well.
I joined GRACE as a caregiver for my husband who had a Pancoast tumor, NSCLC stage III in 2009. He had curative chemo/rads then it was believed he had a recurrence in the spine/oligometastasis that was radiated. He's 10 years out from treatment.