Cancer support thread #76 - newbies welcome!

[Bloodybridget]

Here's the next thread for anyone at any stage of cancer, from noticing a possibly warning sign, through tests and scans, diagnosis, treatment and beyond. Come on in for advice, sympathy and support.
The last thread is here.

If you've been on a previous thread, please come and say hello and introduce yourself!

If you are a relative or friend of someone with cancer and looking for support, please look for other threads; there is one in Life-limiting illness for partners - link to latest. This one is for cancer patients ourselves.

Am an oldie but still lurk. Just popping in to wave @Brassica and @Skap and hope you are keeping well.

Haven't seen much of @Bloodybridget recently, sending you best wishes. Also @BitOfFun, hope you and your dog are snuggled up.

Sorry to see so many new names, all the best for your treatment .

Got a date for the MRI this Friday. Not sure what that means for the next step as I also know the multi disciplinary committee meets on Friday.
And getting ready to register with a new GP.
And just as we get ready to move my DD gets taken seriously over her digestive issues (after a trip to A and E via 111).

I met the oncologist face to face today, for more prodding and poking.

She has reversed from last week and now wants to do 5 weeks of radiotherapy and Cisplatin chemo weekly for the vaginal cancer then internal radiotherapy. My breast cancer is ER+ so I’m going to have tamoxifen injections in the meantime and meet the breast surgeon too so we are ready to go when phase 1 ends.

I do get the weekends off and Christmas Day so something to celebrate.

Hello - thinking of all you strong ladies

@Shrillharridan - the waiting game is tough

I was popping on to see if anyone is or has been on immunotherapy/Keytruda and would like to share e perience and side effects

Hi @takeyourmarks - I was on Pembrolizumab (keytruda) last year as an adjuvant treatment for melanoma. I had 3 doses and felt fine with it, but unfortunately it affected my liver (according to the blood tests) so my oncologist decided the risks outweighed the benefits and I stopped.

Sorry I can’t be more helpful!

@Toofaroutallmylife. Thanks I have had three - first showed raised liver enzymes but these have returned to normal range but I still have a pain in right side below ribs started day one if treatment and mostly feel like I have been hit by a bus- fatigued seemingly all the time - too early to scan have had liver and kidney tests that’s how these function ok

@takeyourmarks that sounds tough - sorry I can’t be more helpful. Have you tried the Macmillan chat boards? There used to be a few pembrolizumab patients on the melanoma forum (I haven’t been on for a while), so you might get more response

Phoned.
They are still waiting for images from the hospital. Which were done in June!
They are phoning me later apparently.

@Iamsodonewith2020ams I was panicking a bit about a missing blood needed for the port that couldn't go ahead without it but it was done OK - but still doesn't actually show on my records 2 days after the procedure.

@AlbertCampion Not sure what your chemo regime is but the BC chemo generally has some steroids with it which tend to tide you over the next day (I was very bouncy and couldn't sleep) then any issues tend to kick in days 3-7 - so you might find Xmas day is not too bad. (This is why I'm concerned as Xmas will be day 5 for me). But I had second chemo yesterday and once you know your issues you can put some things in place - for example I know I get a lot of pain from the filisgram injections (start day 2 if you are doing those) so I will take a clarityn antihistmine tablet beforehand this time.

Second chemo was smoother - 7 hours down from 10. Lot of premed steroid and antihistamines this time. Got some warning pain with the drug I'm allergic to, stopped for a while but ten carried don OK. So all in all much smoother week I'll be interested to see how days 3-7 go now I have some idea what to expect. Also - I got a big steroid crash last time which took me a bit by surprise.

God my hair is driving me crazy though. Wish it would just all drop out already and stop moulting. Almost ready to just shave it off but not quite.

I was diagnosed with stage 4 ovarian cancer in June and tomorrow I finish chemo. Today I found out that my CA 125 is 24 for reference in June it was over 1000🍾 I'm still anxious about the future but I hope that my experience can bring hope to others on here going through tough times x

@MrsPnut Complicated treatment plan but hopefully full steam ahead now. I'm looking forward to a prodding and poking free week (fingers crossed) next week!

@MollyButton They probably don't need the MRI for the first consult meeting - my came quite a bit later due to complications from the biopsy. MRI is generally a baseline for the surgeon. You have a complicated situation all round though I see.

@Lizdeflores That's great news. :) Thanks.

Hi all, hoping your journeys are going well. I've been referred to the ENT unit for possible tonsil cancer as one is bigger than another. I'm 37 and have two dd's, 4 and 2. I am beside myself with worry. Does anyone have any advice or experience while having to do all the waiting to find out? I feel bad even asking as you are all going through so much.

Morning all - so much activity since I last checked in properly.
Greetings and welcome to @MollyButton, @JudyGemstone, @Queenie24, and @takeyourmarks think I have said hello to everyone else but apols if not.
@MollyButton you have so much on your plate, I hope you have some good help and support IRL. @Queenie24 that is a long time to wait for the appointment, not good! Do you think there's any point in querying it?
@JudyGemstone what did your GP say? @takeyourmarks I have no experience but hope you can get more info and that your treatment goes OK.
@balkanscot how was the meeting with the surgeon? Do you have a date for the op?
@Acinonyx2 hope you are feeling reasonably OK after chemo. Sorry you can't eat the chillis!
@TopOfTheCliff that infection is very stubborn, isn't it? I really admire your determination to get fitter, I have been incredibly lazy since I had the lung op, no excuse for me.
@AlbertCampion good luck for first chemo tomorrow.
@seizethecuttlefish sorry about your chest infection, hope you get over it soon.
@Itonlytakesone poor you re horrible endoscopy and biopsies - how are you feeling now?
@InOtterNews v disappointing for you to feel so exhausted again, and the neuropathy. I guess it's pretty normal to have such setbacks, but of course we all want recovery to be a straight line. I think the neuropathy has got worse in my right foot this last week, and rather alarmingly when I was driving on Monday I was worried I couldn't feel the pedals properly - fortunately we didn't have too far to get home but I was really scared, I didn't say anything to DP . .
@Lizdeflores hope your last chemo goes OK - sorry you have had big wobbles. Sometimes it's just all too much.
Also sending warm wishes to @gillmoregirl, @iVampire, @Iamsodonewith2020, @BitOfFun. @FizzyOrange, @Shrillharridan and everyone else.

I do think coping with all this cancer shit is worse now it's winter, still in throes of pandemic (but yay for vaccines), most of us anticipating rather sad Christmasses, etc. We were meant to be meeting a friend outdoors today but have cried off as the weather is so foul, and she was suggesting meeting indoors with windows open but I just don't want to take any risks, I would be gutted to have delays to treatment. We're having online coffee with her instead.

In cheerful news, I have decorated our rather enormous tree and made my first batch of mince pies!

I had a day of progress yesterday too.
I had my first Herceptin injection in my thigh which weirdly made me very sleepy and achy. Although the aches might relate to the extra cycling I am doing on the exercise bike now.
My ankle wound has scabbed and looks dry and clean.
I rang various people to chase things and now have a date for surgery on December 21st. I’m glad now I cancelled Christmas!

My next echo is still pending but a nice secretary is chasing it.

I am slowly picking up household chores. I can’t stand for long and I can’t carry anything but I can sort laundry, wash up, and Chuck out mouldering vegetables lurking in cupboards! I still haven’t braved the Basement of Doom where I had my injury. DH can keep it as his lair!

Best wishes to all waiting for results and enduring treatment this week

MRI for me today- wish me luck!

@mooseyem hi.l don't know anything about tonsil cancer but the MacMillan website is great. The waiting is horrible. I'm at that stage too and like you, I have young kids. I keep thinking about them. Do you have any timescales? I have just been keeping busy. Nights are the worst.

@BitOfFun good luck.

I have finally got my consultants appointment to get my results today. Never met him or spoken to him, as I changed consultant and he's in a different hospital. No idea what to ask. Mind a complete blank. DH coming with me. Hoping he'll be allowed in as we're in a tier 3 area.

Good luck @BitOfFun x

@seizethecuttlefish the doctor said they will see me within 2 weeks. I saw the doc at 12 and by 3 she was ringing. It's always scary when they move quick. How about you, what have you found?

That's wonderful liz x
Good luck Bof x
seize nights are indeed the worst.
I'm trying to get my head around potentially having my appt in Xmas week.

seize Is your appt today or have you got a date today? X

@Bloodybridget

I'm ok I guess just waiting for a ct colonoscopy it could be next year now.

Well.
Images not sent yet.
So I'm phoning the dr secretary tomorrow.
Not sure what use 6 month old images are tbh

2 weeks tomorrow since I wasted I was being referred:(

Was told