Inoperable stage 4 now Gemcis

Hi and welcome to the community, although sorry to hear about your mum. This must be a difficult time for your family. I had Gem/Cis. Treatment regimens vary, but usually similar. In my case I had Gemcitabine one week. This is a long day in the chair, so make sure mum wears loose and comfy clothing, plenty of snacks and drinks and something to keep her busy. Although a long day on a drip, most of the time it is just a saline solution and the drug administered midway. The second week I had Gemcitabine. This time just a few hours. This two week treatment is called a cycle. I had 3 cycles over a six week period. The number of cycles vary according to the individual and some people have breaks between cycles. It is difficult to predict how people will react to treatment as far as side effects are concerned. In my case, I was fortunate not to have any real side effects. Plenty of water to keep hydrated helps. Mum should be given anti sickness pills to help prevent any nausea. Bear in mind, this is just my experience and treatments may differ. I hope I have not overloaded you with too much info. Wishing mum well. Best wishes.

Hi Rily, thank you so much for your reply, that is really helpful - with snacks, are you allowed to eat anything you want really? I guess they’ll tell her this next week tho! It’s definitely  a nightmare situation and has come as a huge shock but I guess it’s no harder for us than it is for anyone else - I hope you are doing well now having come through it yourself.

Best regards :) 

Hi Puglover. In general, you can usually eat pretty much anything you want, but it is recommended nothing too heavy. Little and often recommended with plenty of fluids. The hospital usually supplies tea and sandwiches, but not very appetising. I am doing well at the moment. I went on to radiotherapy which has so far done the trick for me. Thanks for asking. Best wishes. 

That’s fantastic Rily :) 

Hi Puglover

I also have metatastic bladder cancer which has spread. Gemsis treatment regimes vary according to the individual. I've had 9 cycles. First part of each cycle lasted about 6 hours. Gemcitabide followed by cisplatin interspersed with saline drips. A week later I had only a half hour session with cisplatin. 21 days off before the next cycle. Had a blood test before each cycle which was done locally. Oncologist appointment to find out if next cycle can go ahead. Mine needed to be postponed twice because of low blood count. Had CT scans after 3rd and 9th cycles. Good news is that both scans showed that all tumours have shrunk. I am now on the Atlantis trial taking chemo tablets particular to my strain of bladder cancer. The aim is to keep tumours stable and prevent regrowth. Again, good news. Recent scan showed that things are stable.

The chemotherapy suite provide drinks, sandwiches, fruit etc.

I wasn't given a time prognosis but informed that my cancer is inoperable and that treatment is palliative care. Some people on this forum report positive response to treatment. Side effects vary according to the individual. I only had fatigue and hiccups, so got off lightly.

Try to have a positive attitude. The oncologist advised to simply get on with life and keep up hobbies etc.

I hope your treatment goes as well as mine has. Keep us posted. There is lots of support here. Speak to your CNS about any concerns you have. I have just rang my nurse.and she  will speak to my oncologist and ring back later. Staff at the chemotherapy suite were caring and absolutely fantastic.

Hi Richard

Thank you for all the helpful information, I'm really glad to hear you're doing so well, it certainly sounds like it. 

I was surprised that they (a very young oncology registrar) gave her a ball park prognosis. In fairness, she did ask, but I'm also reassured by the fact that these are estimates and are not individual. She hasn't started the treatment yet and so far isn't too symptomatic apart from the constant urgency, so I really hope she sees some improvement once she starts. 

She went for an EDTA today to check kidney function will be ok for chemo. 

I will definitely keep posting here, I'm already feeling supported!

I hope you continue doing so well. 

Best wishes

Hello Puglover

I had the same chemo programme as your Mum will. The chemo nurses should brief you on what to expect and give you a treatment record book that lists the side effects and who to contact if your Mum feels unwell.

We all react differently to it and, unlike rily, after the first 8 hour session it wiped me out for 10 days. Cisplatin made me feel very ill, chronically tired and nauseous though the anti nausea pills stopped me throwing up. Just when you start to recover you are back in for the next session so expect your Mum to feel at least tired if not grim for three months. She may get metal mouth when everything tastes foul but sweeter foods and intensely flavoured foods were ok for me and she'll need to increase the protein in her diet. Constipation can be a problem so the medics ought to give her a gentle liquid laxative but get some Immodium in case the opposite applies.

Hygiene is very important as her immune system will be damaged by the chemo. Avoid busy public places, people with colds, children generally and make sure she washes her hands frequently especially before eating and drinking, brushing teeth. Phlebitis is a common side effect as the Gem irritates the veins so watch out for hot lumps on hands and wrists, get to her GP pdq if that happens. Buy a thermometer to check her temperature at least daily and record it in the treatment booklet. And then there is numbness in the feet, aka peripheral neuropathy (my toes are still numb after three years).

I expect your Mum will get pre-dosed hypodermic jabs of bone marrow enhancer (to boost the immune person) so she can administer these herself. Tip: pinch a lump of belly skin really hard then stab it in the lump and press the plunger, remove the hypodermic then rub the stab site hard. It takes a bit of courage to do it the first time but it's a great sense of achievement later.

CB

Hi Crusty!

That is so so helpful, thank you. Awesome that, even though it was rough for you, it was 3 years ago! This is stuff I just wouldn't have had a clue about until she's in there next week getting her first infusion on Wednesday. I told her to get her chemo bag full of stuff she'll need ready. I do know they're keeping her overnight for her first infusion, I guess just to keep an eye on her. 

Feeling positive, she's feeling positive - I'll be back in touch if I need any more advice - thank you so much again

PL 

Hey everyone - just wanted to say that mums EDTA said her kidneys aren’t up for GemCis so she’s been told today she’s starting 6 cycles of Gem/Carboplatin tomorrow instead. Can’t help worrying that’s not as good! I know that’s probably silly, I’m realising what a rollercoaster this journey is - from initial findings, to indeterminate scan, to lung biopsy coming back clear but radiologist disagreeing, to psyching ourselves up for major surgery, to being told it’s actually inoperable - to finding out about GemCis to then being told no, that wouldn’t be safe....and we’ve only been on this journey a month!!! 

Anyway - hope everyone well, if anyone has any experience of Gem/Carbo please let me know - but she’s starting tomorrow anyway so I’ll guess we’ll know ourselves soon enough.

PL x

Hi . Carboplatin is still a platinum based drug, but I believe it is slightly less severe than Cisplatin and can have similar results . I hope it all goes well for mum. Make sure she keeps well hydrated when she gets home with regular drinks. Best wishes.