Cancer Support Thread #80 Newbies Welcome

[HumphreysCorner]

Welcome everyone old and new. Feel free to post a quick update to help new and old follow.

HC x

I'm going for an MRI on Wednesday and it says:
MRI with contrast both
MRI diffusion weighted

What does this mean?

Contrast bit just means they to help show abnormalities in the breast better by injecting a contrast during the procedure (Im assuming this is a breast MRI). You will get a cannula inserted in the arm/hand and then during the MRI the contrast is injected. Its pretty painless if a little weird to see a cannula if you aren't used to them. Diffusion weighted is just the type of view/imaging sequencing. This is all pretty basic pre-surgery workup to get a better sense of what is going on to plan the most effective surgery.

@gillmoregirl
Still waiting here, too. Scans were on 15/6. My phone appointment with an underling is on 30/7. I'm working on the 'no news is good news' principle. But this will be my second monitoring scan and the first was ok. I'd also had a colonoscopy beforehand with that one, so I already knew that at least there was nothing nasty in the half-colon I've got left. It's bad not to return your calls, but I know they're working flat-out on the back-log here. My surgeon was only allowed to operate on emergencies arriving in A&E because of the aerosol factor. How are you getting on with your ileostomy? It must be a constant reminder, just being there, let alone getting sore and needing intervention.

@Bloodybridget

The best holiday of my life was on my own. I had a 3 week Greyhound bus pass, hop on, hop off, and got half-way across Montana before I had to turn round and make my way back to Boston and my return flight. People talk to you when you're on your own. They know they're never going to see you again so I had some brilliant conversations - one with an itinerant labourer, straight out of Steinbeck. 'Lady, you don' wanna go to Deetroit'. I was recovering from a romantic disaster at the time, so had no one whose company I was going to miss. But, if you're used to living with someone, it's still better than home alone, I think.

Fantastic to be back on the river! Go you!

@Thymeout still no word here. But I did ring oncologist secretary who said scans were not yet on system so hopefully hear next week. More disappointed that colorectal nurses never returned my call. I have only spoken to a cns once during this past year. Support has been severely impacted on by covid. Not good!

Thankfully I've come long way forward in managing Bilbo the Bag. Still learning though as as you say it's a constant reminder. Bilbo very high maintenance as I change morning and evening and need to constantly be mindful of what I eat and where toilets are at when out and about. But needs must and I'm grateful to be at this stage. I just hope surgery take place ASAP for reversal but as no appt forthcoming I guess I'll have my little accessory for another while longer.

Hope your scans are all clear. Xxx

Commiserations to those playing the waiting game. I don't suppose the football is taking your mind off it??

Thanks to all for supportive posts when I posted about my trip down into the doldrums. This thread is great for that

@Acinonyx2 Any more news on the wound-healing? Your frustration and worry is understandable. Hopefully it's on the up-swing now.

@Lunificent Have you asked your oncologist or chemo team about anything for the neuropathy? I didn't get it but I've been looking into getting something for relief of nerve discomfort after my mastectomy and found out about CBD cream. Some people say it works for them for neuropathy. It is ££ though and it's more likely to yield beneficial effects the higher the concentration of CBD, 500mg or above. If my issues don't settle down I'll definitely try it as I haven't come across any other non-drug options that seem worth trying.

For the sore mouth, I used Oralieve toothpaste with a soft brush & Betadine mouthwash. The latter also has a gel. I think the Difflam one others have mentioned actually has an anaesthetic effect. I tried Difflam lozenges but found them foul.

I also came across another retreat which seems to be exercise-based called abcd retreat. It's got provisional dates for 2021 on the website so not sure if it will actually run.

@Bloodybridget I'm in Switzerland and although it's beautiful I'm feeling homesick for English coast and countryside, not been back since 2019 due to covid.

@Lunificent

Hi *@bg2015*. I was her2 borderline. After further testing they found I was her2 positive. I think about 20% of bc patients are her2+. It has meant for me that I am having chemo before the surgery and am having targeted chemo: trastuzamab and pertuzamab.

I’d be grateful for any advice about neuropathy in my hands - on day 9 of cycle 1 of Docetaxel. My hands feel like stiff, stinging crab claws. Is there anything I can do myself to make them feel more normal?

Hi there I'm on the same treatment pathways as you - I'm currently on day 2 of the 3rd (and hopefully!) final docataxel & 2 x mabs treatment.

I've had neuropathy in both my hands & feet & my oncologist has put me on pyridoxine (vitamin b6) to help . It does seem to be holding the neuropathy , although it isn't better it hasn't got any worse. I would say mention the neuropathy as soon as you can to your care team

Good luck!

Hi all not posted for ages but thought I'd pop in and say hi. I'm currently in itu having had my surgery Friday. 1/3 oesophagus and 1/2 my stomach gone. I had been feeling pretty chipper with the 9 week treatment break but back to reality...sigh. Still struggle to believe this is happening to me. I've so many tubes here it's impossible to move.

Big wave to everyone, hope all is as well as can be.

@quinin wishing you a speedy recovery 💐

I'm just waiting for the nurse to ring to check my drain amount. I was hoping to get it out today but more than 30ml has gone in since yesterday.

Lots of luck for results and treatment this week.

HC x

I lost out on the Letrozole Lottery this month, and was issued two boxes of Crescent Pharma brand. Hadn't had that one before so figured alright, I'll give it a shot and .... oh my. Everything aches and throbs and its only been a week! Accord usually works best for me and I don't have any of these problems if I am taking those. These pills are a deep yellow and just looking at them I knew I was going to be in trouble.

Is there any way I can swap these out? I pick them up from the local Boots but they don't have guaranteed Accord either. Or is it a GP call to reissue the prescription?

@HerbalRefreshment. That is interesting. I am on my third month of Letrozole and haven't really thought about side-effects. For the first two months I was recovering from surgery and having daily radiotherapy so I put all my niggles/hot flushes/indigestion etc. down to that.

When the GP phoned me after my treatment finished she said we should catch up to review everything sometime - but of course we are now in the middle of a third wave of covid with half the schools closed locally and no GP appointments available unless its an emergency.

Really interested to hear more about your side-effects. I just checked and mine are Accord as well.

@Quinin sending you positive healing thoughts and hope you get out of ITU quickly.

@HerbalRefreshment I am on Accord anastrozole and am on my seventh packet. I read through the side effects list yesterday and oh my! Now I understand why I feel nauseated most of the time and have aching joints and muscles. It’s not unbearable but apart from steady weight loss due to loss of appetite there are few advantages. I am unsure whether it’s worth telling the BCN and fiddling about. I might just put up with it.

@Bloodybridget I aim to get away for a few days soon. DH keeps booking cycling weekends so I may just sail off without him

Good luck to all for tests treatments and results.
Top x

Hope everyone is well.

I'm receiving radiothérapy on the side of my vagina. In the last 2 weeks I've had 10 out of 25 sessions. After perhaps 5 sessions the site where thé rayons hit started feeling a little sore (just a little). I'm also having chemotherapy (Cisplatin) once a week for 5 weeks (1 session done).

A couple of days ago, I noticed a little discharge from my vagina, I thought it could be knicker crease sweat as it's hot, but this morning I realised it is vaginal discharge, it is thick and whitish, doesn't smells bad (if I put it right up against my nostril it smells a bit sweaty/stale but not unpleasant... thanks to chemotherapy I currently have the scent of a bloodhound). There's not enough to stain my underwear, but I can see a little bit on the toilet paper when I wipe myself. It's also mostly/exclusively on the side the rayons hit. It doesn't itch.

I see the oncologist once a week after radiothérapy and that was today. I told him this and he said it's a yeast infection and it's normal. He didn't look at it or offer any solution.

Thanks to TV advertising I know there are over the counter treatments for vaginal yeast infections. Do I just go and buy one? Normally I have to check all my différent prescriptions with the oncologist, and there are certain things I can't take.

Has anyone else had this?

Secondly, does anyone else have to drink alcaline water the evening before and day after chemotherapy ? I'm finding it really hard. 1.5l is prescribed but the bottles are 1.25l so I just aim for that but I struggle to get it all down. Any tips, please ?

@Happy36 I had discharge during my radiotherapy and it was a little thick but my oncologist said it was dying cells and the bodies reaction to the treatment. If it isn’t itchy then I ‘d just see how it turns out.

Didn’t have any special water to drink either, it sounds pretty unusual tbh.

I’m recovering from our trip to Alton Towers on Saturday, I was really surprised at how much I struggled.

Thanks MrsPnut. How can I work out whether it's dead cells or a yeast infection ?

Also I'd say in general it's gone a bit dry down there. Presume that's normal from radiothérapy too ?

@Happy36 You can buy a kit by Cannesten from Boots etc that has a swab in it to determine whether you have thrush, BV or neither. It tells you instantly. I have used it - very straightforward.

@Happy36 That is normal, I have used many things but the best was Yes internal moisturiser. I’ve never heard of anyone having thrush during pelvic radiotherapy, I’m in a couple of support groups and discharge is common but not thrush.

Thanks again.

I'm not sure who I can ask other than going back to the oncologist, but he's always so so busy.

happy can you ask your radiotherapy nurses? There was a team of them at my hospital and they were the first port of call for any radiotherapy related problems. If you ask the radiotherapists they should be able to refer you.

l don't have any radiothérapy nurses? This is similar to when I was nauseous (before starting chemotherapy) and when I had lots of diarrhoea; the oncologist just said it was normal.

I'm going to ask at chemotherapy about this vagina thing as they will probably be able to advise me or at least explain who I can ask. (Possibly the discharge comes from the chemotherapy drug anyway rather than the rayons).

Oh I can't believe I am here, amongst you lovely lot

My GP has just rang me, following tests including the FIT test, and is referring me under the 2 week rule as there was blood in my poop. I am desperately hoping its just as a result of CDiff which I am currently on antibiotics for, but the GP seems concerned that the CDif has come from no-where (not originally on ABs) and the past 5 weeks of bowel problems are completely new.

I am bricking it. Not least for the camera test, but also being poorly when I am a lone parent to 2 DD's one of which is disabled.

I know a few on here have experience of Bowel cancer tests, so will do some reading back, but can I have a hand hold in the mean time?

@NoOneWillReply welcome to our lovely group, here to hold your hand.

@Happy36 I always had a number to call during treatment. Hope you get some relief.

I had my drain taken out today and feel like a new woman. My surgeon came to look at my wounds and said he was pleased with them. I have numb patches but was told these could be permanent. Rather that than BC.

Hope all ok.

HC x

@HerbalRefreshment- I feel your pain ☹️. I’ve been on Letrozole since January and in that time have had 4 different types and Crescent is by far the worst. At first I thought it was coincidence but I’ve been given it again this month and the fatigue/joint stiffness & pain is worse again.

My pharmacy have put a note on the system to try & always give me Accord ( which I’ve found the “best” as far as any Letrozole can be called the best) and the GP have amended my prescription to state Accord so I’m hoping that’ll cut down on the lottery! Maybe you could ask the same?

Holding your hand @NoOneWillReply. Waiting is the pits - stay away from Google!

Well done on getting the drain out @HumphreysCorner. Another step forward.

Session 10/18 chemo for me today. Still bothered by Diarrhoea. Ward sister wants me to keep a movement diary now . 4/6 of Phesgo too.