My first post

Wow Hilary thats amazing and fantastic to hear! I am so pleased for you!

My consultant has said that my "biological score" (dont know what score he means) is 8 out of 10 which makes me very suitable for Immunotherapy (apparently the higher the score the better) . If my bone scan shows the cancer has spread this might be an option for me if Chemo and an Operation are ruled out. 

Early on I read about a Mr Cunningham at the Royal Marsden who is doing some amazing things with Immunotherapy. I tried to get to see him but was told he would only take patients on who have medical insurance and as per my previous posts AXA/PPP wont cover me.

I would love to know if you accessed Immunotherapy via the NHS as I have to go to the hospital next Thursday to get my results. Previously they have said that should the cancer have spread I would be move to Palliative care but if Immunotherapy is available via the NHS I would love to know more of your story. This will help me push the consultant for a different approach of if necessary go and get a second opinion. Can you tell me more how this came about for you?

Thanks

Mike

Hi Mike

Yes I’m full NHS. I carry a gene MLH1 (lynch syndrome) which makes me a great candidate for immunotherapy. I’m on Nivolumab every 4 weeks for 2 years. I’ve only 2 treatments left. They also told me if new activity they will give me a new immunotherapy. 
Things change so much my consultant told me that he has a patient diagnosed in 2016 and they are still great

Hi Hilary,

So glad immunotherapy works well for you.

Does anyone know if there is another treatment if you can't have immunotherapy?

Angie

Hi Mike 

Your case is exactly the same as mine. I just turned 60 and was diagnosed the week before my birthday. The ironic thing is I'm Uber fit, spent the last 12 months doing regular HiiT sessions, intermittent fasting and keto! Lost weight which I'd obviously put down to my healthy lifestyle! My only symptom was intermittent regurgitation but that was all. So I reluctantly went to see the Doc on March 18th, sent for an endoscopy on the 22nd which I thought would be a routine thing....being told just after I'd sat up that he'd found a "worrying" mass was the proverbial sledgehammer. Fast forward to today, I had my CT scan done quickly and my PET scan was done on Tuesday. Now awaiting the results and an appointment to discuss the path going forward.

Can I ask what symptoms you had to make you visit your doctor? Also are you still eating fairly normally? I'm okay with most things apart from bread which has become my Nemesis!

Hello Bob

good to hear from you. I don’t know if you have just joined this chat but I have found it really helpful. There are some brilliant caring people around who have offered me some great advice.

Like you I didn’t see this illness coming. We had a gym built in the garage during Covid and I bought a spin bike and love the online classes. During 2023 I was probably the fittest I have ever been and then this comes along!

at first I noticed eating was uncomfortable and I was finding big meals tough to get down. I was diagnosed in January in identical circumstances to you! Progressively the pain has stepped up. My GP has been great and at first put me on to codeine and now I am on morphine . make sure you take the stuff they give you for constipation which is a very much needed.

over time I found eating more and more difficult and I was fitted with a feeding tube 6 weeks ago. They then provide you with some feeds and a pump which I can do at nighttime. I recommend some good ear plugs as I found t he pump noise a bit annoying but it definitely takes the pressure off needing to eat.

I have lost a fair amount of weight. I dropped 1 1/2 stone quite quickly (and I was pretty slim to start with) so the hospital encouraged me to try and get some weight back on. They say to ignore all the healthy eating stuff I was doing before and switch to full fat milk etc.

Now I can eat sloppy type meals (pasta with sauces), I have found fortisip and Complan meals really good as they get lots of vits in. Perhaps the only upside is I can now eat ice cream and I have been knocking back Hagan Daas Salted Caramel like there is no tomorrow!!

Bob, personally I found the period between initial diagnosis and starting treatment really frustrating. Initially I went in as a private patient but AXA dropped me as soon as they found out I had cancer (a hated company who are completely in the wrong - case now witH financial ombudsman) . Switching to NHS seemed to cause a lot of delays but they are really nice. I had loads and loads of different tests but thankfully I write this as I sit here having my first session of chemotherapy.

wishing you all the best Bob. As I said people on here have been really kind. If there is anything else you need to know I can help up to thw point I am at now but there are some people who have been on the whole journey who may be able I help.

mike

Hi Mike 

Thanks for replying. We must be brothers from another mother as our experiences are spookily similar! I'm literally the fittest I've ever been in my life (my FitBit tells me I'm in the top 10% for men between 60-69)

I'm sending you positive vibes for your chemo and success with kicking the sh*t out of this annoying little bas**d!

Hi Mike I hope your first chemo went well. Things have moved on lightning fast for me. Had a meeting today with the consultant surgeon who told me both my CT scan and PET scan came back negative with the exception of a couple of localised lymph nodes.

He said the tumour was 5cm and like yours on the junction with the upper stomach. The plan is now to have four chemo sessions over eight weeks commencing two weeks from now. This means I can now go my "lads" holiday to Malaga with my other 60 year old mates! This will give me a much needed boost to my health and mental well being After the chemo he will perform keyhole surgery to remove the upper part of my stomach, esophagus and a few lymph nodes.

I'm feeling in a much better place now I have a treatment plan in place and he's advised me to keep up the exercise regime to aid in all that's ahead for me. Take Care

Thats brilliant to hear Bob and the fact that you have moved to treatment so quickly which is really good news. Also great you can get out to Malaga as its so important to be able to live your life normally as a way of fighting back against this b*stard!!

I had my first chemo a week ago last Friday. For the first couple of days I felt OK (a bit spaced out but my wife says she didnt notice the difference!) but it really hit me on the Monday. From then until the Friday I found it hard to get out of bed feeling really sick, upset stomach and super dizzy. It was pretty tough. However by this weekend things began to get better and today I feel OK.

As everyone says on here its seems the Chemo hits people in different ways so I really hope you get a good ride and its doesnt impact you too much. And if you do feel really unwell I spent most of last week telling myself  that if my body doesnt like the chemo than neither will my cancer so at least we know we are fighting back!!

For me its round 2  a week today and I wish you all the best for the start of your treatment.

Good Luck

Mike

Thanks for the reply Mike. You're spot on about the living it up when you can. I'm sure Spain will give me everything I need to raise my spirits before going into battle!

Hi

We have no idea why but my husband waited 8 months before chemo started 2 days ago. In fairness, he started 5 months after diagnosis but it was the 'wrong' mix so had to wait again. The consultant assured us that the wait wouldn't adversely affect the outcome and we were reassured when we discovered that there's a 'new' (new to us) blood test: carcinoembryonic antigen (CEA) test that can measure the cancer load. For example, the 'normal' level is 2.9. It's higher in people with known cancer: a score of 20 suggests that a tumour has metastasized distantly. My husband's score is 6.6 so the consultant is relaxed about the wait as he believes the tumour to be slow-growing and localised spread.

All I can advise is to talk to the Macmillan nurses or the specialised nurses you've been allocated and they can act as a channel of communication with your consultant.