Cancer Support Thread 84 - gently crunching our way into autumn

[mowly77]

New thread as old one about to be full. As those who have been around far longer than me have said: Welcome. Pull up a chair, help yourself to a biscuit, a large gin, or a detox tea. Or all three. This is a supportive thread for anyone with cancer to discuss how things are going, ask for advice etc., vent, scream, or discuss life in general.

Please feel free to join for support if you are going through tests as well, hopefully they will come back all clear, but if not we are here to hold your hand through the journey.

@Bloodybridget I am sorry to hear your news. Your kindness and friendship helped me through my first cancer in 2020 and gave me strength to face the second. Thank you. Wishing you peace and loving times with those you care about.
Top xxx

A question for those who had neuropathy.

I’ve had a degree of this since round one, it’s manifested as half numb toes and very sore fingertips and nails so far. But this round, (which is the 4th) along with that I am having lots of pins and needles. All down both arms and both legs. The bouts last ten minutes or so but are happening 10 times a day or so. Is this normal? Is this neuropathy or something else? I don’t know whether to mention it to my CNS as this dose was actually lowered to 80% and my other side effects are much milder but this pins and needles thing is a bit worrying.

@Gilead so sorry to hear your news, hope treatment not too brutal and is successful.

I seem to have developed radiotherapy burns under my arm recently. Radiotherapy finished in July. Does anyone know if this is fairly normal or should I get it checked out? It’s definitely on the skin, not something underneath if that makes sense.

Went for my haematology appointment this morning to be told it’s been rescheduled for two weeks time 🙁bloody annoying although I’m still not convinced they would do a biopsy there. And it’s the biopsy I need asap. Is it worth ringing my gp or just waiting two weeks?

Yes it is nerve symptoms, worth giving the team a call. I am going to try the cold gloves and socks for my paclitaxel I think. No idea if it is any use but no downside that I can see. Sending hugs x

Sorry that post was for @AGreatUsername

@Gilead sorry to hear your news too. How are you feeling? Did you take somebody with you? 11 mm sounds small enough to be fixable and I understand SABR is radiotherapy aiming for a cure? It sounds quite positive. Hope you feel that too x

Sorry to hear that @EachandEveryone it all sounds chaotic. I would ring the haematology secretary and ask her first I think.

I’ve just had my second breakfast. My chemo belly is growing fast 🙄 But my fabulous friends are rallying round and sorting out my boat, my sails, my mooring and all the stuff I am too weedy to do. They even lost a Skittles match I was absent Captain for this week! Great work 😂
Sending best wishes to all
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I got a bit of tingling in one foot after my first chemo @TopOfTheCliff with pax/carbo and I used cold slippers and then just freezer ice packs when the slippers thawed and mine hasn't progressed so far. With the cold cap too I wore 2 vests, a sweatshirt and a jumper and took a blanket as I was cold the time before. It feels tougher on the feet than on the head! I looked at the research and there did seem to be evidence it works for some. Hands might be logistically more difficult and boring if you can't then do much. I also take alpha-lipoic acid and vit B.

Anybody on a PARP for OC ? There is a new report out that says Niraparib can actually shorten life compared to taking a placebo! Im going to ask my consultant about this next week. Wondering is anyone here has seen this and asked their medical team

Thank you all.I’m more okay than I thought I’d be. The consultant seemed positive that at 11mm this was fairly curable. (80% after five years was quoted). I had to go on my own as dd had a tooth abscess! But I was okay. A bit stressed afterwards, dd is autistic so doesn’t always respond appropriately. She was peed off I didn’t ask her how the dentist went!

@Podgedodge on the leaflet I was given yesterday it says side effects can occur up to twelve weeks after treatment.

@Podgedodge there is also something called radiation recall dermatitis, which is rare but as we all know in the land of cancer, some of us end up with the short end of the stick repeatedly. Have a google and see if it sounds like your situation - commonly confused with cellulitis.

Well the her2 finally came back as negative so plan is surgery which is next Thursday the after about 4 weeks I'll start chemo which will be EC every two weeks for 4 cycles then paclitaxle weekly for 12 weeks, then radiotherapy. Also need to have something that could affect my bones so need to see the dentist. Oh and they are also going to ask my GP to give me an injection to stop my periods so I can also have hormone therapy.

@HerbalRefreshment , am reading all the info, but oh my goodness, that case study! Poor woman.

That sounds like a bit of a long slog @fudgecat - I guess on the other hand you have a plan, how are you feeling about it all?

Glad you know what the plan is fudgecat - hope it goes smoothly for you.

Had an ultrasound appointment today, and found that the Hematoma which was partially drained last week is still very large and un-drainable, so it looks like another operation. Bit pissed off, although I know I should be grateful that the actual cancer can be dealt with. Because it's now four weeks since surgery, I'm assuming that it will delay radiotherapy, as I will need another 4/6 weeks for the wound to heal. Good job we had no plans for Christmas.

Hope everyone has a good weekend. x

@Bloodybridget I'm actually pissed hearing this. You were the nicest person to me. You made me feel better about everything and gave me such strength. Not just me, but everyone. You didn't ignore a single person. Not one persons post went unanswered. Thank you for everything I mean that sincerely. I'm sorry this shitty disease is taking you. I hope you find peace and comfort with your family and friends and please note your internet sisters will miss you terribly. I really will. I often think of you because you were kind and you have great advice. Take care and I'll say a prayer for you ❤️xxxx

@thereisonlyoneofme as you know I'm on Niraparib and hadn't heard this either. I'm on the OC group on FB and have just seen that the study was for women who took Niraparib after a recurrence and not after first line treatment like us. How are you doing? I have my scan and CA125 review next week and feeling very flat.

I had loads of pins and needles @AGreatUsername but not until about 10 sessions in. It gradually ramped up to what you describe and more, & I was worried about permanent neuropathy but no one in the chemo unit was! They don’t seem to be bothered until you can’t use fingers to do fiddly things like buttons for example.

And to be fair it has totally gone since stopped the Pax. Hopefully yours will be temporary too.

Re: Dosage reductions: you can make clear you don’t want them unless discussed with you first! You shouldn’t have to, but here we are. Mine was always at 75% but onc reduced to 60% without telling me first or explaining why. I had to fight to get it back to 75 & after that I just downplayed my symptoms, which is very much not ideal but I got so fed up of the relentless cookie-cutter system. I know what I can cope with & no-one else.

Would it be ok to join you for my 2ww. Been having pelvic pain and then my ca125 is elevated at 40. Ultrasound of ovary found a 4 cm cyst with thin separations, a 6 mm mural nodule and fine internal echoes. They’ve referred me on the 2ww pathway and my nhs online noted say ‘suspected gynaelogical cancer’ which was horrible to read. I’m not sleeping and no anxious. I’m only 43 and have small children. I’m holding on to the hope that it is a similar cyst/growth that I had removed from sane ovary in 2009 which was I think was a cystadenofiboma.

Hi @Toastandmarmiteandtea - I am also struggling in the waiting period so very happy to wait together.

i was actually due to get the results from a multi disciplinary team review of my MRI on Tuesday, but my consultant emailed me to say they had a technical issue so couldn’t view the images as planned. So now I’ve no idea when they will review and I will hear. I need that before surgery can go ahead and biopsy.

I am a single parent with two primary aged DC, 45 and also unable to sleep. Mine is a different potential cancer to yours I think ( fibroid that may be uterine sarcoma) but very happy for you to DM if helpful - I am usually awake most of the night!

Hi @Toastandmarmiteandtea - sorry you're here, of course you're welcome to ask questions, just offload or anything else. We all remember those early days of waiting. There are a few of us here with OC, although mine was small and found incidentally after hysterectomy (and second opinion) with my main diagnosis of endometrial cancer. Fingers crossed for you

Thank you Ss and RLB. Yes, the waiting is very difficult as you don’t know what you’re dealing with. I keep veering from hope that it will be nothing to complete horror and despair.

Me too!

Welcome @Toastandmarmiteandtea I am one of the OC brigade having been diagnosed at 36 earlier this year.

I don’t think most people appreciate the absolute gulf of horror that opens up when you think you have cancer. I feel for you, these weeks are hard. It’s natural to swing between hope and despair.

More than happy to offer a handhold while you wait.

@Ridingladybugs hopefully they will review your results this Tuesday and get in touch with you.

Unfortunately they definitely aren’t this Tuesday. Possibly next Friday if they can sort out the technical difficulties ( kind of unbelievable as I can view the scans on my iPhone!) and then let me know the following Tuesday.

@Toastandmarmiteandtea welcome to our lovely group, of course you're welcome to join in. I have stage 3c OC, diagnosed nearly 2 years ago now and am happy to answer any questions you may have. I totally understand the fear and not sleeping, those early days are truly the worst time.

@Ridingladybugs I've been where you are several times, building up to the day when you'll hear something and then 'oh sorry, it hasn't been read yet' and you have to wait again. I've thought so many times that this level of tension and stress makes the whole thing just so much worse if that's possible.