Cancer support thread #77 - newbies welcome

[InOtterNews]

I couldn't see new thread so here we go...

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)

Morning, I had the last chemo of this stage this week and had another allergic reaction but this time I was only on my last litre of saline. The lovely nurses swang into action and I had piriton, anti histamine and paracetamol through my IV and then back to the saline.
My face still decided to swell up once I got home and I spent all night up and down on the loo or drinking water. It took another nap once a I was home from radiotherapy to feel a bit more human.
Last nights sleep was much better, only one loo trip, so I am back to normal.

I’ve got three more radiotherapy fractions and an MRI scan on Tuesday so we can decide how much my tumour has shrunk. Also got a meeting with the breast surgeon on 3rd Feb to plan for that tumour to be removed along with the lymph nodes. I think we are going to try to reconstruct the other breast at the same time if my insurer will agree as surgery time at the private hospital is being booked by the NHS.

@Bloodybridget I have Emend prescribed for antisickness, generic name is aprepitant. The cisplatin chemo is renowned for making people sick so it was given as standard. I’ve been lucky and it hasn’t affected me but it may be the drugs.

@Lubballoo
Fingers crossed here for you.

@MrsPnut thanks, I do get aprepritant too, I'd forgotten. Just two tablets. Sorry to hear you got a bad reaction to chemo again, hope you are feeling better now.
@Lubballoo hope your appointment with the surgeon goes well today and that he or she can tell you where and when (although in my experience you will probably have to wait to get the date from a secretary/scheduler). I also have a friend whose surgery was moved from St Thomas's to the London Hospital just before Christmas.

I was just reading about the PARP inhibitor niraparib being approved for women with stage 3 or 4 ovarian cancer. Apparently it will be offered even before recurrence. I was only stage 2 on diagnosis and haven't been told anything different, but had a recurrence nine months after finishing chemo. There's a story about it on Target Ovarian Cancer website.

@Bloodybridget
Snap! V good news. I think it's one of the category of drugs that have made such a difference to other cancers such as malignant melanoma? Sounds as if it will be more tolerable for the patient, too, if it's only a daily pill. More gain for less pain.

Have you asked your oncologist about trials that might be suitable for you? If I remember right, you have an unusual form of ov ca? Wouldn't be so expensive to roll out for a small percentage of patients?

@Thymeout I remembered after I posted, when I was talking about it to DP, that last time I spoke to my consultant she said if the chemo I'm having now works (i.e. if I have a clear scan afterwards) they would prescribe a PARP inhibitor - I guess this one - to keep me going and delay recurrence. My tumour was carcinosarcoma, yes rare and aggressive, the bastard!

I'm wandering if it's more effective than Bevacizumab I will ask the onc when I see him

Hi everyone

Had my first chemo today, it went well and better than I thought it would. I'm now feeling tired and nauseous so have taken an anti sickness tablet.

Will catch up on news later.

Good to hear about the new drug approval. I hope everyone is managing to cope with everything. I admire you all for your courage and attitudes. What a great bunch.

Today I am going in for my first Entyvio (vedolimumab) infusion since early December before my surgery. I have been on monthly infusions for almost two years for my ulcerative colitis. It has been life changing, and put me in endoscopic remission after about 4 months. It works by targeting certain cells/receptors in the intestine and is not as I understand it a whole body immunosuppressant.

I am just a bit worried about restarting it given my situation with a Brenner tumour, but with my gynecologist have decided that using other drugs such as prednisone would be worse. Sometimes risk/benefit analysis is hard. I wonder a bit if it had anything to do with my post op infection that landed me in hospital for 5 days.

I hope it will quickly damp down the UC flareup that has been brewing the past few weeks, with cramping and urgency. Just what I don't need I have to say. The thought of further surgery in a UC flareup scares me, a lot.

I am lucky that the infusion is only 1/2 hour, and the only side effect is a bit of fatigue and sometimes a visual migraine (weird flashing lights in my visual field). The nurses at the infusion centre are really good at starting IV's and almost never have to poke me more than once. Much better than the hospital nurses, who, bless them, get much less experience with starting IV's. I had both forearms covered with bruises.

Sending healing thoughts to all. The sun is shining here and I am thinking about planting some peas and potatoes to hurry Spring up. I may love the Fall (autumn) but Spring is almost as good,

@LoveFall I was also on a infusion for Crohns it had given me 7 years of remission. I really miss not being on it and it scares me that my Crohns may flare up again. I hope restarting infliximab can be considered in my case another question for the onc, I need a list!. Good luck with your infusion and I hope it continues to work for you.

@HumphreysCorner hope you had an OK night and are not too nauseous today.
@LoveFall hope the infusion was OK. Sympathy to you and @Lizdeflores, it must be very hard having a chronic condition when the treatment is compromised by other illnesses.

@Thymeout alas I was rushed into A&E Wednesday morning. I started feel unwell on Monday and by yesterday I was delirious and unable to walk. So I'm back at PRUH. Though on a surgical ward and now I'm convinced I'm going catch covid being in the closest contacts with others since March. They're treating me for pneumonia

Edit: Covid diagnosis came this morning at 4am

Thank you for all the good thoughts, my appointment with the surgeon was really encouraging, he was very confident that surgery will be able to proceed, should be in 2nd or 3rd week of Feb. And my scans have been brought forward to next week plus one of the amazing nurses gave me a soft prosthesis ready for the op so it really is all feeling real now.
@BitOfFun so good to see you here! Hope the horrible side effects have passed from the radiotherapy now but that it's doing a good job gor you otherwise. Surely next time they'll sort the anti-emetics properly? Sending love to you x

@InOtterNews so sorry to hear that, thinking of you. Hope you are not too uncomfortable at least. Sending every possible positive thought your way xx

@InOtterNews that's awful news what a worrying time for you and your family. I wish you all the best x

@InOtterNews

Oh no! Am hoping that your v lucid post after being delirious yesterday means that the treatment is working. Thank God there IS some treatment this time round.
Am sure we're all thinking of you and cheering you on. I'm imagining you in my old bed in surgical under the care of Staff Nurse Angela, Old School, and all the better for it.
Much love and

Oh fuck @InOtterNews

Many positive thoughts going your way

@InOtterNews I'm so sorry to hear your news, hope you are getting the best possible treatment and that you get through the illness as easily and quickly as possible.

@InOtterNews sending you love and strength, what a worry for you xxx

@Bloodybridget with your flushed face, did it happen on every chemo cycle? I had the full tomato face for a day and then on and off to a lesser extent for a week, sometimes one side, sometimes the other and sometimes both.

@Lizdeflores the bone aches have been awful, I cried with the pain of it. The oramorph made me so constipated that I had to take 3 sachets of Laxido for 3 days to shift the blockage (probably made worse by the chemo) and then had diarrhoea for the next 3 days. It's just getting reliable today so hoping to graduate from Tena to normal pants this evening.

Today is the first day I have had the energy to boot up my laptop - my first chemo has wiped me out. I have slept for about 20 out of 24 hours a day from day 4 in the evening until day 8 at lunchtime. I didn't think it would be this bad and this is my first cycle! Hats off to those who manage this with small children. My adult daughter has been staying with me all week. Does this mean my dose has been too high or is it just one of those things? Interestingly, the nausea and vomiting which have always been my greatest fear have been completely absent.

InOtterNews, I hope you fight off that nasty virus quickly. Thinking of you.

Thanks for the kind words about my infusion. It went fine, just have a bit of a red sore hand as the IV went bad at the end. No big deal. I hope it works, and fast. It was nice to be welcomed backed by the nurses at the infusion centre.

It is amazing how many new biologics are springing up and helping people with autoimmune diseases. As a young woman I was a physio and I remember so many people with rheumatoid arthritis in such pain and becoming disabled quite young. Now they stride into the infusion centre and talk about their sports activities. Not to mention Entyvio getting me off prednisone and able to forget about where the washroom is everywhere I go.

@FizzyOrange no , I haven't had a flushed face every time, it's been very random. I hope your bowels start behaving themselves!

I've had a flushed face/sunburn feeling with both the taxol drugs I've had but didn't have it at all with the EC even though I was still on the steroids. It surprises me every cycle when I wake up on day 2 briefly trying to work out if I was out in the sun/wind the day before!

@InOtterNews what a shock! I hope you are weathering the Covid well. Fingers crossed the new bone marrow is doing it’s job!

@Bloodybridget I am feeling like I’ve been beaten up by a gang of doctors at the moment. Four weeks on from Surgery I’m still sore and have just cleared an infection. I’m still leaking from the wound but it’s drying up slowly. I should have about four weeks till the radiotherapy starts but I’ve got a Covid swab tomorrow then BCN review then the CT planning session then Herceptin and maybe zolendronate infusion on Wednesday. Luckily I am driving again.
I started some exercises this morning and am considering moseying up to the allotment for some left handed gardening tomorrow. I’ve ordered seeds and potatoes for the spring planting to cheer myself up.
It’s a bit odd people seem to expect me to be recovered already. I keep explaining I’m only half way through treatment so far. I think they are bored of me being poorly now! I know that I am.

Greetings to all having treatment. I’m so relieved my chemo is over! You have my sympathy.
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Had first FEC chemo on Thu, felt utterly wretched until today. Hoping to manage a shower later. At the moment I don't know how I can do it again...At least I had my scans the day before chemo & all clear elsewhere apart from breast. Want to post more but will have to wait.

@InOtterNews Sorry to hear that - sounds scary and unpleasant! Hope you are getting the best care possible.
@Bloodybridget I got aprepitant like MrsPNut m(just 3 tablets) – I’ve also got a box of ondansetron for my next 3 cycles when I change to EC. Domperidone is –useless-- very mild.
@MrsPnut sounds like a full on complicated treatment plan you have there – you seem to be dealing well with it (better than I would/am I suspect!).
@HumphreysCorner hope you’re doing OK – it can take 2-3 days for side effects to really come through.
@FizzyOrange every cycle has had different effects and I’m at a loss to explain it. Nausea and pain were terrible last time. This time no nausea – but awful cramps and diarrhoea. And always really knocked out – like I’m under a really heavy weighted blanket. I really thought this one was going to go better – .

@HauntedDishcloth sorry you're feeling sick. I'll be switching to EC (no F) next time. Can they tweak some drugs to help next time?

The sickness and tiredness is awful, going to have to ask for different anti sickness tablets.

Big wave 👋