Cancer support thread #74 - come in, we're here for you.

[Hippiechick162]

Welcome to the new support thread for anyone who has cancer, at whatever stage of treatment, is worried about symptoms, or is waiting for tests or results.

This is the place to worry, moan, ask questions, share experiences and good and bad news, and celebrate milestones!

If you've got a loved one with cancer then your best place for support is probably on the Life-Limiting Illness board.

Our previous thread iswww.mumsnet.com/Talk/general_health/3760336-Cancer-support-thread-73-come-in-were-here-for-you

Current members, please do introduce yourselves smile

Oh Derxa, that's rubbish, I am sorry! I do hope if it is cancer, that the treatment is minimal as you say.

Thanks bridget. I may not get any option. But I know how gruelling a MX is. I've calmed down a bit now.

Herceptin #8 of 18 yesterday .
I have a stinking cold sore that is making my whole face ache with shooting pains to add to the joy . Zovirax was not doing much so rang GP and was able to pick a prescription for Acyclovir tablets on my home . To be taken every 5 hours day and night for a week . Our GP practice is rather wonderful !
Also saw consultant in (deserted ) breast clinic who was happy with the skin expander implant . She was able to show me one and talked me through the procedure.
She injected 60ml into it and said that should make it sit better .
Back next week for more .

Rubbish for you @derxa . I will be glad when my mx is all done and dusted . I was due to have mx and diep done mid March but was only able to have mx and skin expander due to hospital in Manchester wanting me out quickly .

@Trumpton I hope the Acyclovir kicks in fast, and that the skin expander gets more comfortable.

I just had a nice surprise, found a pair of trousers I'd forgotten about, and they still fit, yay!

Squiffy
Fellow colon cancer patient - I hope I've remembered right - how are you getting on? How was the op? Do hope you're recovering well and have a plan for the next stage in your treatment in the middle of all the covid chaos.

I have a date for my first monitoring appointment. End of November, with scans and a colonoscopy first. I think that's probably later than it would have been normally but I've always been low-priority compared with others so am focusing on getting my stamina back.

Best wishes to everyone else.

@derxa sorry to hear your news. I'm glad to hear someone has had a reconstruction after mx. My oncologist made it sound like it was either radiotherapy or reconstruction.

@Trumpton I hope your feeling better soon.

@Bloodybridget the joy of finding something you'd forgotten about and it fitting.

No updates from me. Just trying to find a mastectomy bra that might fit. I'm a 30G and most ranges start at 34

My oncologist made it sound like it was either radiotherapy or reconstruction. Wait till you see the plastic surgeon

@barberousbarbara will a face mask suffice?

Chemo update: second round of AC on Thursday. Only side effect this time has been insomnia. Wednesday night my beloved DD was awake throughout the night so ended up putting her in bed with me. Thursday night: 4 hours sleep. Last night: 3 hours. I can only assume its the anti nausea meds/steroids. I don't feel nauseous at all. Appetite is fine and eating my usual helpings. Anyone else just not followed doctor's orders and stopped taking the meds?

Hope everyone else is ok as can be expected

@citybumpkin I'm seriously considering adapting the ones I wore pre-mx. In regard to meds, I didn't take any of the anti-sickness medication they sent me home with. I was told it was just in case and I never felt sick. Your lack of sleep is most likely due to the steroids. I had similar problems. I wouldn't stop taking them without the agreement of your medical team. I worked with the prescribing clinic nurse to reduce them down. By my last cycle I took 1/5th of the normal prescribed dose and still suffered with side effects. I was still sent home with the full dose, just in case (they're to prevent an allergic reaction to the chemo).

@barberousbarbara I would just adapt your existing bras! I'm given 2 anti nausea meds to take each morning for two days after chemo then 1 each morning for a further two days. I definitely take all the meds prior to each chemo. Spoken to my oncologist and she was amazed I didn't need them. Said to continue to take them and prescribed more sleeping pills. I've spent most of my life avoiding meds so this seems very ridiculous to take one tablet to counteract another then another. The anti nausea tablet can cause insomnia and the sleeping tablet can cause nausea... Unless there is some other reason for taking the anti nausea tablet i.e. inflammation reduction then I don't really see the point. I would rather have sleep and feel a bit sicky.

@citybumpkin I've always avoided meds too. I was having to take anti-indigestion meds to counteract the steroids, which were to counteract the chemo. I found out through chemo that I'm super sensitive to steroids. I suffered far more from them than the chemo itself (and I needed a blood transfusion at the end chemo due to severe anaemia caused by carboplatin).

I was quite open with my clinical team that I wasn't taking or needing my anti-sickness tablets and they never said I had to take them.

@barberousbarbara I've been told by someone else who is nearing the end of chemo to continually take every med they give me as the chemo builds up over time and therefore, so does the nausea. I'm opting for the every individual reacts differently approach and self adjusting the meds. I know my own body. Reading up on the anti nausea meds makes me wonder whether to take them regardless as they are also used to treat inflammation especially in tumours. Will I regret not taking them if this thing spreads at some point? Hmmm...

The only side effect I've had on this round is lack of sleep. I'm still waiting for the weird lightheadness which had kicked in by this point last time. I've read of so many women having big issues on AC or EC and worried that my effects are minimal (so far).

Was the carboplatin that bad? Here I have the option of adding it in with the taxol. I'm thinking I had the lumpectomy first so couldn't see the tumour's response to chemo so throw everything at it now?

@citybumpkin There's lots of mixed messages out there about anti-sickness meds. I didn't have FEC/EC/AC as I'd had a total response by then so it might have been different if I had. I'd follow your clinical teams advice.

I had 4 cycles carboplatin with weekly paclitaxel (Taxol). It wasn't too bad just a bit relentless. The effects of the carboplatin would kick in at day 10, I'd be very tired and emotional. It does knock your blood around and some people might need a blood transfusion. I had all the symptoms of anaemia (apart from a bright red face from the steroids). It did the job though and by week 11 my MRI was clear of cancer and it's since been confirmed from the mastectomy biopsies. I was on a clinical research trial, hence the mid-point MRI, and I took the trial drug so I'm not sure if that also contributed to the response. I certainly wouldn't be worried to add carboplatin to the mix if I were you. It's worth finding out if you'd have the taxol weekly or 3 weekly. With weekly they keep a much closer eye on your bloods. My team were watching my haemoglobin levels closely, ready to act when they dropped too low.

@Th@t

Tried to tag Thymeout to ask how you are doing. I had my MRI last Tuesday and up tomorrow for colonoscopy. Have had very anxious two weeks. Not sure if they will tell me next steps tomorrow but hopefully they will have scan results.
Need to take prep this evening and from googling it appears to be vile. Any tips on drinking Moviprep and keeping it down?

Need some reassurance. I had a polypectomy two weeks ago, my womb was full of them apparently. A biopsy was done as a previous ultrasound had shown a very thick womb lining - 23mm - I'm 48. I also had a Mirena coil fitted at the same time as this is the first line of treatment for a thick lining. Today I've had a call from the hospital asking me to go and see the gynae consultant this Thursday and now I'm bricking it! Endometrial hyperplasia was mentioned two weeks ago but now I've convinced myself all sorts of nasty stuff is going on.

Glad to see you found us .
I have no knowledge of that area .
I am free of breast cancer but awaiting reconstruction .
Someone will be along in a while .
@DivisionBelles

Sorry dropped off the thread. Welcome to all the new people that have arrived in the last couple of weeks since I have been on. Sorry you a hear but it is a great place to get lots of support.
@Thymeout thanks for remembering and asking after me.

I am doing fairly well i am two weeks post op today. I am still in some pain but off the morphine and just doing paracetamol. It was a long 9 days after surgery before my bowel started working I was so worried it was going to hurt but it was fine.
Got pathology back they got clear margins, tumour was 3.5cm which they said was large for the bowel (would love to know how big it was before chemo) they took out 39 lymph nodes including one away from the bowel they were concerned about and chemo no longer in nodes so they have said don’t need anymore chemo. I cried when they told me. Although I got this information from the surgical team and don’t see oncologist until 22nd June so would like to confirm I genuinely don’t need it and it’s not due to the covid situation.

My diagnosis and treatment have been amazing and no delays my only complaint is I wish everyone would say the same thing.
Every time I speak to someone they seem to be telling me something different re diet what to do. Even the genetics people/surgeon are telling me completely different information.
And two days before someone telling me I didn’t need anymore chemo the surgeon was saying I definitely would at least two more rounds but probably more since I’m so young so it would be good to talk to oncologist properly next month and have all my questions answered.
They have extended the time they want me to shield for I was supposed to me free 8 June which then changed to 15th so it was three months after last chemo but surgical team now want me in until end of June to give me more time to recover from surgery and said they are expecting another peak middle of June and want to me to miss that if it happens. In 9 weeks I have been outside my front door 3 times for medical appointments. I know it’s for the best but I’m over it. It will make such a big difference for my day when I’m allowed out for a walk again.

Hope everyone is doing as good as they can.

I tell lies! I’m 3 weeks post op, 2 weeks home.

@gillmoregirl - you're probably mid-colonoscopy at this moment. Sorry I didn't see your post about movicol. Too late now, but for anyone else, I found it went down better chilled. The worst thing was not being able to eat. I felt so empty. Fingers crossed the doc will be able to say something positive. Mine said he'd be surprised if it weren't malignant, but it would be relatively early-stage. I was counting my blessings that it had been discovered at all, because I had no symptoms and was being scanned for something else.

@Squiffy01

Oh, what a relief! 39 lymph nodes - wow!! they're certainly taking good care of you. I only had 17, which is more than the standard protocol. No wonder you're feeling sore. I had 6 days with only the occasional fortisip and a tube-feed because I was looking peaky, but can't say I missed solid food.

YYY to everyone telling you different things about a low-residue diet. Bananas were particularly controversial. I followed the 2 week no fruit or veg rule to the letter. Even rejecting a Bounty because of the coconut. But I'm fine now and can eat anything, tho' little and often seems to suit me best and chemo has messed up my taste buds. I crave anything with vinegar and fizzy sweets. Am focusing on protein and vitamins to get my strength up, but, like you, I think I'd be recovering more quickly if I were able to get out for a proper walk. Anything longer than one end of a v small garden to the other would really help.

I have been driving to an ATM, a cash-dash to get the money to repay my shoppers. Also, my car needs some exercise, too. Don't want to find it's seized up. It's a weird experience leaving the house. There's a different world out there from when I started chemo at the end of Jan.

My release-date, self-decided, is July 9th. 12 weeks after my last tablets. But that will depend on the second peak. I live in one of the most hard-hit boroughs in London - no idea why we've come off worse than neighbouring boroughs with more vulnerable demographics. Perhaps a covid overflow of patients from King's.

Where was your tumour? Mine was transverse and still haven't worked out which bit is now joined to something else.

Hi everyone, a book recommendation here - find out about Jane McLelland, there are also Facebook groups to join. She is a 20yr cancer survivor and on a mission to help other people.

There’s so much good information and a protocol that shows how to attack cancer cells from many angles.

Totally worth a read. I feel I’ve gotten to a new level of hope by this gift.

🙂

@Thymeout I was in middle of it as you say. Wasn't as bad as I feared nor was the prep. I did chill it and managed to get down with a straw. Toileting was worse. Now I know what Johnny Cash meant by ring of fire 🔥 lol.

No other polyps seems on colonoscopy. Rectal polyp evident 4cm sessile. Consultant said largely polyploid but with flattish villous component. 4cms long. Hopefully this will be removed via transanal endoscopic surgery but if not open surgery and resection. Biopsies taken. MDT to discuss me when they next meet. So back to waiting for results and next steps.

This Covid situation is very worrisome. I hope you are finding ways to get through this. Two months has certainly changed the world we live in. Sending you and all best wishes. Sorry I'm not good at naming everyone I'm trying to work on small phone and not very technical. 🌈

@DivisionBelles

I will be thinking of you tomorrow . Hope all goes well .
It’s very quiet on this thread at the moment .

@Trumpton thank you x

@Gillmoregirl
That sounds promising to me. Not that I'm any sort of expert. But there doesn't seem to be any indication that it's gone far below the surface. Whatever it is.