Cancer Support Thread #79 Newbies Welcome

[MrsPnut]

Welcome friends old and new, to the most supportive thread on Mumsnet. Everyone is welcome whatever stage you're at (fears, diagnosis, treatment). Introduce yourself and say Hi

Good luck to everyone having treatment this week. Hugs to all - especially if you're feeling rubbish (physically, mentally, or waiting for results - ugh

Lunificient I've done three rounds of 10 days of Filgrastim and haven't found side effects too bad. They've gradually got worse as time has gone on (didn't get any with my first course) but I'm in discomfort not agony. For me it's in thighs and hips. Definitely working according to my blood counts.

Thanks Babamam!

@Bloodybridget and @thereisonlyoneofme
I'm wondering if you had different doses according to your situations. Correct me if l'm wrong, but Bridget had particularly aggressive tumour and the nodule was in a different area of her body so they brought out the big guns.

But there is only one of me was originally inoperable so they may have given her a lower dose she could tolerate and live with? And then they changed their minds and found a surgeon who was willing to have a go. Do you know what sort of ovca? Serous, mucinous, low-grade? Huge tumours. Much better out than in. You must feel so glad you agreed to go ahead.

*
I just drop in now and then. Had usual TAH for ginormous ovarian tumour 6 years ago - a non-malignant Borderline. Then on my last monitoring scan they picked up a totally unrelated colon cancer. Hemicolectomy October 2019. Stage 2, but grade 3 tumour. Oral capecitabine. Clear scans and colonoscopy. Feeling v lucky. Monitoring scans in July.

[quote Bloodybridget]@Barneybobo I'm very sorry you're in this horrible situation. Chemo is the pits - are you on carboplatin and Caelyx, four-weekly? I just finished that, also second time round ovarian cancer. How many more? My sixth was cancelled because my blood counts were going so low, maybe you'll be let off early too![/quote]
I was on carbo and gemcitabine but only on gem now every three weeks with one of. I had a bad reaction to the carbo so they won’t give me that any more

Hey lovely ladies, I have just caught up with the old thread and this new one (thank you @MrsPnut) and so sad to see new and returning members. This is the loveliest thread on MN with the kindest ladies you will meet.

Well, I survived my surgery and came home yesterday afternoon. I only needed a hysterectomy, omentectomy and removal of a lesion at the top of my abdomen stuck to the omentectomy and some endometrial lesions on my peritoneum. I am so thankful to avoid the bowel resection and stoma. The first thing I did when I woke up was to start rummaging around in the bedclothes and try to get my gown up to see if I had a stoma! I feel exhausted as I had so little sleep in hospital. My surgeon insisted on 2 suppositories on the day after surgery and 2 the following day which brought on the worst gastric cramps which coupled with trapped wind were awful. I spent most of the third day and night on and off the commode so got even more tired. I had a bit of a wobble last night and thought I had come home too early (I wasn't really given a choice) but now I am so pleased to be back.

Thank you for all your kind thoughts and good wishes .

To introduce myself, I am mid fifties with stage 3c ovarian cancer diagnosed in December 2020. I have had 4 cycles of chemo, followed by surgery this week and then 2 more cycles of chemo.

Oh @FizzyOrange I'm so happy for you. Home and no stoma! You brave woman ❤️

@BadEyeBri thank you ❤️

@FizzyOrange Yay - glad to hear you came through and are home. I now have the opposite worry - no poo started stool softener, prune juice, apple....

Right shoulder area seems to be swelling up and getting stiff.

@Acinonyx2 so happy you are ok too! Oh dear, your poor shoulder, is this expected with BC surgery? I have been so constipated with chemo so have too much experience with it, I once I had to perform my own manual evacuation tmi. I find the stool softeners take a couple of days to soften a severe blockage. Try and drink as much water as you can while taking them. Is it Laxido you are taking?

@FizzyOrange so happy you are back home and that the surgery went well. Gastric distress is awful. How is it now?

My introductory post seems to have vanished, so I’ll start again. 48, one DS9, dealing with breast cancer recurrence since June 2020. Initially diagnosed in Dec. 2016, ER/PR +, HER-. Had lumpectomy, bilateral mastectomy with DIEP flap reconstruction, bilateral oophorectomy. I am BRCA2 positive.

This time around I had neo adjuvant chemo, then surgery (13 lymph nodes removed), radiotherapy in Feb. Currently waiting on a bone scan (happening on Wednesday). At the moment having my 2nd dose of Zoleodronic acid. Just being back at the chemo ward is nausea-inducing.

@FizzyOrange so glad no stoma for you! Hope you can sleep, eat and poo in a controlled fashion , and are not in too much pain.
@Barneybobo that's interesting about your chemo drugs, I just read up a bit on gemcitabine, I'd never heard of it. I've managed OK on carboplatin, I think it was mostly the paclitaxel and Caelyx that caused the worst side effects.
@Thymeout you're right that my tumour was a vicious bugger! And maybe the different chemo drugs work better depending on tumour type.
It's so cold and grey here today - and our garden shed still isn't finished, grrr.

@balkanscot I thought that constipation would be the issue after my surgery but I still have the opposite problem. I have so much wind and explosive bowel movements tmi. I had an 18cm fibroid which I could feel so this must have been laying on top of my bowels and now it's gone so I am wondering if my poor insides are confused now. I am just going to eat very plainly for a few days to see if it will settle.

@Bloodybridget the stoma was one of my biggest worries so I am hugely relieved!

@FizzyOrange one of the better ways my life has changed since hysterectomy is that I need to wee far less frequently - I can only assume my bladder has more space!

@Bloodybridget I have already noticed the same too! I would sometimes have a little leak if I had left it too late and haven't had that yet either. Every cloud lol

Fizzy glad you are home. The best thing is being able to be in your own bed and the quiet ! They found fibroids in me as well, and a rare tumour on my appendix, as well as two very large tumours on the ovaries, one of which had twisted and was necrotic. Wonder what would have happened with that if no surgery. CT scans are good but dont show everything Ive realised. Glad you swerved a stoma, thats what I was dreading.

@thereisonlyoneofme thank you, the stoma was my worst fear. They told me from the CT scan that my fibroid was an ovarian tumour!

@FizzyOrange I see! Eating plainly is a good strategy, I think you are right, your bowels need to adjust to a new and different (better!) environment they now find themselves in.

Home now, straight into a work-related Zoom meeting. Wishing it was Wednesday already and getting this bone scan out of the way. Have downloaded Headspace app. as recommended by my Maggie’s counsellor. The sense of dread that tends to envelop me from time to time is immense.

@FizzyOrange well I pooed this morning and disappointed it didn't make bbc headlines

Yes shoulder/arm issues due to node clearance. To be expected.

Can't bear to contemplate what's under these dressings - but getting them changed tomorrow

But we did it!

@FizzyOrange I'm so glad all went well with your surgery! Thrilled that you are home.

@balkanscot I've had the Headspace App for a while and I do find it useful. I hope it works for you too.

Great to hear that @FizzyOrange and @Acinonyx2 are back from surgery. Wishing you well on your recovery. Back home after my port fitting today and hoping it’s not too sore. Don’t really fancy Chemo through it tomorrow though. DH’s travel arrangements have worked out and he’s on his way home. Although he won’t be able to come in with me tomorrow it’s good to know he’ll be around for a few days.

After years of tough corporate jobs I just can’t believe how lovely and compassionate people are where I’m being treated. They are all being exceptionally kind.

DD1 still struggling with the news and was inconsolable at the weekend. A good friend who was treated (and is still receiving treatment) for cancer a couple of years ago generously had a chat with her yesterday. She had kept the diagnosis restricted to only a few close people. DD1 had no idea and was fairly shocked! We had been on holiday with them and parties etc when she was in the thick of treatment. It’s had more impact than anything I could have said so hopefully she can begin to come to terms with it.

Thinking of you all and hope everyone is doing well today.

Greetings all.
New thread recap I was diagnosed last June with a Breast cancer ER+ and HER2+ so started chemo straight away. I had a 22mm tumour and a 25mm lymph node so after chemo went for lumpectomy and total axillary clearance but the other 28 nodes they took were clear. I dislocated my ankle during chemo and had it pinned and plated which was very horrid to put it mildly.
I've survived the surgery, the seroma, the wound infection and a fistula and finally healed before radiotherapy. I am now on the Kitchen Sink Regime with Herceptin till October, zolendronic acid for three years , and anastrozole for five years.

I signed up for the SafeFit trial through Macmillan and have got fit with a wonderful online instructor. I have lost 8kg so far and am running a boot camp here. Cycling, physio and exercise classes and gardening are getting me fit again. I haven't had any arm swelling just some nerve pain but my hip arthritis is bidding for attention so I am trying to stave off a hip replacement. I really don't want to go back to hospital this year if I can avoid it!

@Acinonyx2 don't worry about the wound drainage if they want to stick a needle into you. They go through the scar and it doesn't hurt at all and the relief is immense! Try to do your exercises to increase shoulder mobility if you can. They really help.

I found Movicol/Laxido the best laxative but avoid the orange, it tastes vile, go for Lemon and lime. I still need it occasionally as the Herceptin seems to make me erratic. I am also taking amitriptyline for various nerve pains (arm foot and fingers/toes) which makes me sleep like a baby.

I am doing the Breast Cancer Now Moving Forward course but its just a lot of videos to watch which while informative isn't very supportive. This thread is a much nicer place to hang out!

Best wishes to all.
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@ChickandLamb it does help, although I do tend to nod off before the sleep cast, which I usually listen to in the evenings, is finished.

@TopOfTheCliff you must have got the same moving forward pack I did (last week). I haven’t clicked on any of the links just yet, I am just waiting for this bone scan to be over. At the moment it’s all I can think about. I really wish you could do face to face stuff as in the “golden days”. I didn’t know Laxido comes in other flavours, I was only ever given the orange one. It made my nausea sky rocket. (not envy) Dioctyl capsules were my saviour.

Evening everyone! Glad that those that had surgery recently are at home and sleeping in their own beds which will definitely aid recovery. @balkanscot will be thinking of you tomorrow, the night before waiting for a procedure or result is the worst.
I ended back in hospital for the afternoon. 3 weeks ago I developed an abcess on my beam end, very painful and my white counts were very low. So a course of antibiotics followed. Had quite a good weekend felt quite active and not quite so low. Then last night the familiar discomfort on the other side!! So back in today, very low neutrophils ie almost 0 so back on antibiotics and a wee injection to give them a boost.
On the plus side my liver and kidney function are excellent. Trying to see the funny side of a boil on my bum but its not funny when you are trying to sit!!

I feel a bit of your pain alittlewornout. My poor vulva is taking a battering with the radiotherapy. Sitting comfortably is quite a skill and I've developed a bit of a "John Wayne" walk. The radiotherapy nurse was happy with the skin, it's not broken just very inflamed. She's given me some new ointment which has a warning on the side saying flammable in huge letters. Let's all hope I don't have a fooff fire 🔥