I've been diagnosed with colon cancer - CT today of check, abdo and pelvis.
Trying to reduce pred seriously now as I want my immune system to really go into overdrive. 7.5 mg to 7.
Any tips on what to expect managing PMR alongside radiotherapy, chemotherapy and surgery?
Just a bit scared...
You need some one more qualified than me for help but I can offer sympathies and good wishes. I'd be scared too. Good luck.
Hi Peggles
Sorry to hear about your diagnosis, but this is not the time to reduce as you are under a lot of physical & mental stress, my advice would be stay at 7.5mg for now as you need something to remain constant.
I saw you read my Posts from when I was diagnosed with Breast Cancer & l will be happy to give you Chemo Tips when you get there.
What order are you having your treatment in? You’ll have seen my Post that they are always optimistic that the Chemo ‘may’ & l stress ‘may’ wipe the PMR out, l certainly improved & got my Pred to 5mg, that’s why I’m keen for you to stay at 7.5mg for now until you see the Surgeon, the Anaesthetist & a Pharmacist before Surgery.
I had Hydrocortisone Cover in Theatre & again during the night. They also give Dexamethasone before, during Chemo & for three days afterwards, was l a happy camper?! 😂
Following your CT today they will make their decision of which treatment comes first, so please let us know, I have lots of Chemo Survival Tips!
Where are you based, the U.K. or elsewhere?
Wishing you all the very best, it’s a hard road but the one thing it does have is an end date & a plan, not like our unpredictable PMR!
Any questions just post or if you prefer, just PM me!
Don’t be afraid, My Moto was:-
‘I’m going to beat this, wearing lipstick!’ And, so far, so good!
Best Wishes 🍀
Mrs N x
Thank you - and your post gave me lots of info.
I'm in the South East and the MDT meet on Thursday so hopefully I'll know more after then.
Just want to plan!
X
Yes, you’ll have a better picture after the MDT be prepared to fill your diary with Hospital Appointments, it’s a new Social Merry Go Round!
Let us/me know & we’ll all be supporting you 🙏🏼🍀
YOU DARLING DARLING MRS NAILS XXXXXXXX
Oh Peggles, I am so very sorry to hear this... I cant even imagine. Of course you're scared, who wouldn't be? I have no experience with colon cancer, but my daughter had a very rare ovarian cancer 4 years ago and she is not only still with us, she has been cancer free for 4 years and she is the Mum of an 18 month old, healthy, happy baby boy, who we never (in our wildest dreams) did we think would even exist! Miracles do happen and hopefully they have caught it early enough; with all the new amazing treatments they have today this could be nothing more than a blip in the matrix! I will keep you in my thoughts and prayers .
Oh Peggles sorry to hear your news. Angela has given you good advice, I don’t have any, but I send good wishes and hugs.
O dear Peggles, sometimes life seams so unfair. 16 years ago I had a nasty kidney cancer, and the worst of that period was the uncertainty what whould happen and how my future would look like. I hope you soon will know more about the treatment options, it will give you grip on the situation as far as possible. And also hope that next year you look back to it as something in the past. A hug for you
So sorry to hear your diagnosis - I do hope it all goes well.
Don't be too desperate on the pred front - you are at the stage where if you reduce any further your body will have to make up the amount of pred to what your body needs to function. If you reduce too fast your body won't keep up and you put yourself at risk of an adrenal crisis in addition to everything else you are facing - because they are all stresses and that is what your body needs the steroid to deal with. Only reduce after discussing it with the doctors, especially the oncologist and anaesthetist if you have surgery.
And like PMR - planning is not always possible. Everyone reacts a bit differently to the steps in cancer - the doctors don't even manage to get their planning 100% right! I can't speak about PMR plus cancer but I have been through cancer with my husband twice. The first time it was the blind leading the blind because his teratoma was so advanced no-one knew what would happen except that it was a type normally found as testicular cancer so should respond well to chemo. It did. Then it was surgery and then r/t. We took each week as it came but he was much much sicker at the start than you will be. Last year it was prostate ca and r/t again. The most limiting thing was the fatigue - the first time we had a blue badge, the second time we didn't. I noticed the difference - it made it much harder to do anything together. So put in for one asap - usually having the diagnosis cancer on the application gets you one. It's a small thing but useful. And get yourself a contact with Macmillan, things have changed a lot since our time but having their advice is a great help - they are up-to-date with what is available for you to smooth a rough path a bit.
It will be fine - it is far more daunting looking ahead and wanting to plan than it is when you get through each step as it comes. If anyone offers "help" give them something concrete to do for you. If someone offers a taxi service - accept gratefully. I would have given my eye teeth for such an offer! And beware Patient Transport - not not to use it, it can be a wonderful help, but know that it is most likely to be a minibus style ambo which picks you up sometime and brings you home sometime - the hospital works around the patients who are on transport, and it can be a long day if you aren't feeling well/fatigued anyway.
Do come and tell us how you get on xxxx
Hello Peggles. Sorry to hear of your diagnosis. I know it's a big hit mentally. Colon cancer operation myself & chemo. coming up to 3 years now ago. Do you definitely know that it's an operation, plus chemo & radiotherapy? I was given an option in order of treatment. However I didn't have GCA at the time & was not on pred. The cancer is the biggest priority at this time for yourself. I think! My surgeon & anaesthetist had sorted my other health problems well for the op. Hope that helps.
I'm not having radiotherapy as the tumour isn't in an accessible place? Surgery on the 3rd of October. Initially the surgeon was optimistic of key hole surgery and then up and running in a month. Them my husband reminded him of the vile PMR and because I'm on steroids it's looking like a stoma.
Hopefully reversible but I'm too scared to ask in case I get an answer I don't want.
Then chemo.
I'm at the "what did I do to deserve this?" stage still. Im not obese, I don't smoke, I'm not (quite) an alcoholic, no family history and have really good organic eating habits.
No blame on You Peggles. I was given a trial option of chemo 1st followed by op. Chose the route of op. 1st as it made more sense. My diagnosis was a hepatic flexure tumour which is close to the liver. Part of the transverse colon RH side was removed by Keyhole Operation successfully & then they analysed surrounding tissue to see possible complications. They graded the results to give further options if required. A fellow patient required a temporary stoma which was later reversed after his chemo. PMR & pred does complicate it for yourself & it does't seem a clear picture for surgeons! Tough time! Go with your instinct. Hope that helps. ATB
Darling Peggies. I had thyroid cancer and full removal of thyroid and glands and no chemo. I am told I have very low chance of recurrent cancer and don’t think of it a lot. I know colon cancer is highly treatable these days so I am looking forward to hearing about your journey Sending you support and friendship. It’s part of it all to be scared. Xxxx. Linda xxx
I don’t have any experience but sending lots of hugs and good wishes, and pray that all goes well for you.
In my prayers.
Sending you soft hugs and prayers. Take care of yourself and rest as much as possible.
Sorry, I am a bit new to this whole thing, but wanted to let you know I am praying for you and wish you the best.
I'm sorry to hear of your recent colon cancer diagnosis. I had surgery for the same diagnosis almost a year ago. Your treatment plan will depend on your histology report and everyone is different. My PMR was under control during this time and I have had occasional flares since then. All the very best and keep positive !
Hi Peggles, so sorry to hear your diagnosis, we're all here for you. I'm like Mrs Nails so won't repeat her good advice. I do have GCA as well, was diagnosed 5 months prior to BC. Main point don't reduce the pred, discuss with your surgeon and oncologist, collectively they will advise the best course of action - particularly the Anaethetist - he'll be the go between prior to surgery, I trust them implicitly. I had the intravenous Hydrocortisone before and after the surgery and still needed to increase my pred in the days following. The surgery was a breeze compared to the GCA symptoms. PMR - I didn't know I'd got it. Just keep an eye on your AI symptoms and if you did need to increase it would only be temporary, with a reduction plan following. Don't ignore any symptoms.
I knew I might get as my mother had it so I was adamant I was going to beat it and I did/am. Nursing staff told me my positive attitude would be helpful and it was. It made me determined, I cared for my husband too and wasn't going anywhere anytime soon!
Best wishes Peggles, will be rooting for you.
~Sending abundant hugs and blessings your way - not much more I can add other than I will hold you in my special thoughts & prayers for the next leg of your journey into the unknown ~
Wishing you all the luck! And sending hugs! My SIL had it and has just gotten the all clear! 💕
Sorry to hear about your problems Peggles, Sending you lots of hugs and praying for you xxx
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