Great news! I am very new here as my dad just got diagnosed. It’s stage 4. I am still leaning what that means. Thank you for sharing.
Hi Newsten not sure if you were talking to me or not ! But I’ll answer anyway ! My father has had one session of FOLFOX chemo. They are still awaiting the results of the her2 protein test. This will tell if they can use herceptin or not to treat him too. The prognosis is not good. The chemo is more palliative rather than curative unfortunately.
What has your father been told ?
I am new to this forum and have found this discussion so helpful and comforting. I really admire everyone on here as they are all so positive and strong.
My 51 yo husband was diagnosed with SCC of the upper stomach in early Jan at stage 3B. He has just finished round 2 of FLOT and thankfully it has been relatively easy, with just tiredness for a few days after the infusion, full appetite throughout (he is eating for England!) and very little neuropathy etc. which we are so grateful for.
We are very anxious about the possibility of worse to come.. Did yours get alot worse as each round went on? Also did you lose all your hair? His has started to thin slightly but after 2 rounds, he still has a full head of hair which helps him feel more 'normal'. His oncologist is v well renowned but not the most approachable guy. He was pleased to hear that my husband had an appetite but didn't say why. Did your oncologist say it means the cancer is responding to the treatment? My husband has also experienced less burping and general stomach discomfort since treatment started, but we don' want to hope that this means the treatment is working. Did you have similar effects when you had the pre op chemo?
He is v anxious about the op and the post op chemo and how awful that will be. How much weight did you lose after the op and how bad is the post op chemo for you? Is it just more tiredness than pre op or many more symptoms? We are so so scared, I didn't even realise it was possible to feel this much despair and fear. We have 3 young children and keeping a happy face on for them is exhausting on top of everything else.
I'm sorry for all the questions but it would be so good to hear from you or anyone else on here who could help clarify things and ease some of the anxiety.
I am so happy for you that you are almost at the end of your own nightmare..i know what feelings you must have also gone through, and I commend you for being on here with such a positive tone to help others.
I'm so sorry to hear about your husband's diagnosis. When you first hear the news it is devastating. I was about to get in a taxi to the airport when my gastroenterologist called. He ended up having to tell me over the phone and I got in the taxi and headed to the airport. It was all very surreal and I kept expecting to wake up at any time. I just couldn't get my head around the fact that everything around me was going on as normal while my life had just been turned upside down. There are still times when I can't believe that this is happening to me. Still I think, on the whole, I am dealing with it ok.
I am glad to hear that your husband is having FLOT. I have been led to believe that this is the gold standard for stomach cancer. The protocol is 4 sessions at two week intervals then surgery followed by another 4 sessions after surgery. My oncologist did warn me that not everyone can tolerate the post-op chemo.
I started to lose my hair about two weeks after the first chemo session. I did not go completely bald but was left with what looked like baby's hair. I had a lot of hair so perhaps that's why I didn't lose it completely. My eyebrows got a little thinner and I lost my lower eyelashes but, strangely enough, not the hair on my legs. I still had to bloody wax them! Lol.
I felt very tired after the chemo and it took a week to ten days until I started to feel like myself again.
I had a rare reaction to the Oxaliplatin which affected my voice after the second session. It was like I had inhaled helium from a balloon. It lasted about an hour. The neuropathy in my fingers lasted a bit longer each time and especially when taking stuff from the fridge or freezer.
I had terrible problems eating before I started my chemo. My tumour was near the bottom of my stomach which meant my stomach wasn't emptying as it should. After the first chemo session my appetite improved and by the time I was ready for the last one it was like I had lost my appetite and found a horse's! I even gained a little weight during that time.
I had around 4 weeks between chemo and surgery and felt quite well. I had no problems eating. Both the oncologist and the surgeon were convinced that this was evidence that the tumour was responding to the chemo.
The surgery went amazingly well. I had keyhole surgery. I was operated on the 8th December and discharged on the 16th. I was very very tired after the surgery. I remarked to my surgeon about how exhausting it can be just washing yourself. He reminded me that I had just had major surgery and even though the scars from the operation were healing nicely on the outside there is still a lot going on internally.
I have probably lost about 5kg since the surgery but I seem to be maintaining my weight. I'm still getting used to knowing how much to eat and I don't eat much in the first two or three days after chemo because I'm sleeping a lot.
I've had 3 of 4 post-op chemo sessions. After the second one the neuropathy in my fingers was worse and I still had it up until the day before my third session. My oncologist decided to remove the Oxaliplatin as he didn't want to risk permanent damage to the nerves. I was concerned that by removing the Oxaliplatin it could make the treatment less effective but I couldn't get him to answer that question clearly. He said that post-op chemo is tough and not everyone can tolerate it but it was good that I had managed two full sessions. I feel that I have recovered more quickly this time without the Oxaliplatin.
I have one more chemo to go and I'm hoping that I am in the home stretch now.
I am glad to hear that your husband is eating well. The best thing is to be fit and strong enough to get through the treatment.
I feel for you having to go through this and put on a brave face for your children. Please don't forget about yourself. It is good to be strong for your husband and children but please make sure that someone is there for you too.
I'm sending you a friend request and then you can send a private message if you have any questions or just need a chat or a rant!
Take care and sending hugs to you both.
Be brave. Even if you're not, pretend to be.
My dad has SRCC and it had penetrated the stomach wall and it had touched the stomach lining and the doctors found 2 lymph nods near the pamcreas which where inflamed. They didn’t do any pre operation therapies but went straight with the operation and removed 80% of the stomach, stomach lining and the two lymph nodes. They have suggested radiotherapy and chemio therapy post operation. From what I’m reading here it feels that the doctors should of not operated him. So confused
It is often difficult to say which treatment works best. Eg. pre-surgery chemo may not work well for patients whom the oncologist feels may not be able to handle the side-effects that come with the treatment.
My suggestion is that you discuss with the oncologist the treatment options. I recall listing some questions like:
1. What are the options available? Why do you recommend this particular option? (And if you have read about a particular chemo regime you may wish to ask if that might work for your dad)
2. What are the side-effects? How do I overcome these?
3. What should I do (or not do) to ensure best results? Eg. diet, supplements, exercise
On the non-medical side of things, there's a lot we can do to keep our spirits up!
All the best.
I'm so sorry that I haven't replied to your post. I only saw it now when I was looking for something else. In the last few months I have found that I don't always receive notifications or the Daily Digest.
You questioned whether your Dad should have been operated on or not. I mentioned what I was told but it is up to the medical team to decide what is the best treatment. Although we all have stomach cancer we are all very different.
I have finished my treatment now and my scan and blood results were good. My oncologist said that he is hopeful for me now but admitted that he didn't feel like that at the start. He said it was bad. He never gave me any indication of how he felt. He said to me very early on that we couldn't see into the future and we just had to take one day at a time.
I hope that things are going well for your Dad.
Take care and sending hugs to you both.
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