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

@NogbagTheBag Pity Parties are welcome on this thread! When I was on chemo earlier this year I was moaning about it constantly on here. Don't forget you're also dealing with the cumulative effects of your previous sessions. Do lean on others for childcare so you can do as little as possible - literally. I was able to manage a bit of diarrhoea with immodium. If you really can't hack it, your oncologist might be able to reduce the dose. And as Top advised, check about other meds - maybe even IV hydration. Are you having three lots of this regime also? You're one down at least!

@MrsPnut Are you still having the chemo with the chest issue?

@Acinonyx2 How goes it with the radiotherapy?

@HauntedDishcloth I just finished radiotherapy yesterday thanks. My skin is doing OK thankfully - but I have been feeling quite unwell - and got very unwell over the last week (in bed, stopped eating) but getting better now. I find in general that when you present with issues that are off-script you get dismissed with vague blather. My breath-hold technique is legendary though. Have you finished radiotherapy too?

@NogbagTheBag I had quite a few chemo-pity parties. I did find there were peaks and troughs as Top says - but alas it get worse and worse towards the end. But the end does come.

@Bloodybridget take care - we all take time out now and then.

@TopOfTheCliff I'm not getting on well with startfit. I have a regular group and it clashes with work - did you do one-to-one? I was so looking forward to it.

I'm also seeing weight loss as a perk (along with my reduced boobs which I certainly suffered for). Still a few more pounds before it becomes a negative.

As @quinin wrote, I get very down when I actually feel ill - but then I care more about my prognosis overall when I feel well. I also like to watch some funny things to cheer me up. I was just watching some more of James Corden's Crosswak Musicals on Youtube with dd. If you haven't seen any - here is the one I first found - Beauty and the Beast. I'd never heard of them before and was immensely entertained. Lots of good ones - Les Mis in Paris....

Thanks for the support it has helped a lot!
@TopOfTheCliff I am very jealous of your boat adventures, I would love a boat, I love being around the water and really wish we could move closer to it (the sea preferably!), there's something so incredibly refreshing about being on the water, one day maybe!

@HauntedDishcloth Imodium has helped (I'm now hoping it doesn't send me too far the other way ). I do have to remind myself that the effects are cumulative. Well done on complete=ing the radiotherapy, I completely agree with you on driving with the window down and letting the wind whip around without smothering you in hair!

@Acinonyx2 congrats on getting to the end of radiotherapy, sorry you've not been feeling well, is it caused by the radiotherapy or something else?

I only have 2 more chemo sessions to go, my breast surgeon said that this is by far the hardest part of the treatment, the surgery and radiotherapy shouldn't be so tough, I just can't wait to get the chemo over with. It just destroys you doesn't it?!

Thankfully my parents are on hand and happy to help with the children as much as possible, I don't know what I'd do without them. I don't like to rely on others though, it's not how I usually operate and it can be hard to admit when I need help.

My older two boys have come back from their grandparents today, so we're having takeaway pizza for tea

Wombling back in if I may.
Sorry I have been away and not offered support elsewhere on the thread, but my head wasn't in a great place.
Finally had my hospital appointment today and consultant saw the enlarged lymphnodes, scanned it and then immediately said 'I'll take some biopsies. "
Which had me immediately 🤯 as I'd only mentally prepared for a prod and immediately burst into tears. The staff were fabulous, and the biopsies didn't hurt at all.
So two week wait for results and hopefully a CT scan in between. 🤞
Doctor did say it could be something other than cancer. But I don't think it is as I have so many other symptoms. I'm going to be here fighting it though with you lovely lot. 💪
In the mean time I'm finding I'm doing a lot of things I enjoy without the guilt.

@NogbagTheBag it really can't be helped - the needing help. I was very dependent on dh doing stuff a lot of the time and he had some health problems some of that time - we were a right old pair. Dd just glided along - as she always does as long as the wifi works. You are not exaggerating or being demanding. It varies person to person and sounds like you were like quite a few of us who found it rough going and often debilitating. I was so done by the end - can't imagine getting through one more cycle - I say this in solidarity and commiseration.

Then you start to forget what it's like to feel that ill - I was reminded of it recently though . With cancer - when you feel ill - you really hope its 'just' the treatment. It would have been an uncommon reaction to this particular type of radiotherapy but I truly hope that's all it was. I do seem prone to odd reactions.

New chemo Kadcyla starts up again in 2 weeks. How are my Kadcyla buddies out there getting on? I am dreading it, frankly. I've had one - it did not end all that well but I'm sure it will be better than other chemo. But I'm also working which is tough when you get sick (a lot of my work is zero-hours ).

@PaddingtonStareBare the famous 2 week wait can feel veeerrrrryy long. Try to sane and distracted.

@HauntedDishcloth Chemo has been delayed by 2 weeks to see if this reduces in the mean time. They will need to try to deliver my next chemo through a cannula and when my veins collapse the minute they try to access them so that should be fun.

@NogbagTheBag Be kind to yourself, I know the feeling of needing to do everything but chemo is so tough on your body. I had the horrible taste in my mouth when I was on cisplatin back in dec/jan but it did recover within a month or so of finishing treatment. My favourite foods tasted awful and I barely had any appetite.

@Acinonyx2 Well done on surviving radiotherapy, I hope the next Kadcyla round is better than the last one.

@PaddingtonStareBare I hope your wait is swift and the news good.

My chest is still incredibly sore and I haven’t managed to sleep past 4am for the past few days. It has reduced ever so slightly in size which is what I am clinging on to.
For some unknown reason, in my area, GP’s are now not able to prescribe steroid creams and the dermatologist gave me a private prescription but the pharmacy thinks they will struggle to get hold of the synalar c cream he prescribed. I just want to get my 4 rounds of Docetaxol done, along with surgery and radiotherapy and then get on with my life. I’m much luckier than many in that my work are still paying me and are very supportive but I’m in month 8 of treatment and I am fed up of it.

MrsPnut is the synlar just a trade name? Would your pharmacist be able to get a generic? Then it's just a case of get the Derm to re-prescribe the generic. We are having a 'mare with drug availability in NI. It's pants.
I'll have my fingers, toes and everything crossed that you are good to continue in 2 weeks.

you're right @Acinonyx2, I just need to accept the help and get through this. I'm thankfully feeling a bit more normal today and managed a walk out. I really hate being laid up in bed! I am feeling done with it now, so by the time I'm done I will be well and truely done.

I'm hoping you get some relief soon @MrsPnut, I've had issues getting strong steroid cream before, definitely see if they can prescribe a generic as @KitBot suggests.

@PaddingtonStareBare I hope the wait isn't dragging too much, it's possibly the worst part, fingers crossed your hear soon.

@KitBot It’s not just the branded thing, his replacement suggestion was fucibet which is also on my GP’s red list and the pharmacist said would be equally hard to source. I’ve had fucibet loads of times before but now it can’t be prescribed by primary care, the pharmacy suppliers aren’t keeping it in stock.

@MrsPnut that's crap. Are there human online pharmacies? Could you try there? I could see if my supplier stocks it but then there's the small issue of me illegally supplying and shipping it.

@Acinonyx2 you are so right about forgetting feeling ill. I had Herceptin 15 this week and for some reason I am feeling sick and weak and everything hurts. I don’t know why. I have had to scale back my plans but DH is being ever so chilled and easygoing so it takes the pressure off. I am so looking forward to finishing this! 3 more to go. I just hope it is the Herceptin and not the anastrozole causing trouble as I have five years of that one.
Will they scale down your kadcycla do you think? I would be nervous too.
@MrsPnut I hope the improvement continues.
@Babamamananarama are you out of solitary confinement yet? Thinking of you every time I drive through the Muff.
Top

just bumping as this thread has slipped several days and wondering if theres a problem with it !

Hope everyone doing as well as possible

@thereisonlyoneofme well done. I thought I had killed the thread!
How are you?

Im OK thanks, except I just typed a reply and its disappeared! Hope you re feeling less sick. I am going on a PARP soon, and wonder sometimes if the "cure" is worse than the disease, although I know OC is incurable anyway..
at least on chemo you have a couple of weeks between sessions that you feel OK but this is a daily thing, for you too.
Bit put out that I have gained all the weight I lost after op and a weeks hospital stay. Perhaps they should market a week or two
in hospital as a weight loss programme and charge for it, Im sure it works better than any diet.

Hello all. I have a question about hair regrowth. I’ve just had my last Docetaxel. Should I start using hair regrowth shampoo now or would it be pointless as Docetaxel is still working.
I have surgery on September 13th and DP has suggested we have a short break abroad at the end of August. Any reason you can think of that I shouldn’t /can’t go?

Hi @Lunificent
I don’t think it makes any difference which shampoo you use to be honest. I just used Head and Shoulders and mine has grown back thick and springy! It started growing while I was on the Docetaxel.

I am still staying close to home because here in Devon our Covid cases are at their highest since it began. I would be concerned if you go away you get pinged or infected and can’t go for surgery. But I am happy being cautious. We all have our own take on it.

@quinin - I've just popped on here to tell you that I was posting on this thread 8 years ago because I had oesphageal cancer ,stage 3 .

Had the pre and post op chemo and still here doing very well .Had my transhiatal esophagectomy at St Thomas's in London .I'm a bit late with the offer but do PM me if there's anything I can answer or discuss .

Sending strength to all those on here going through treatment and enduring that nightmare of tests and waiting for a dx.

@thereisonlyoneofme I am going onto a PARP soon too and am also dreading the side effects, particularly nausea. I feel anxious at the moment as I'm not on any treatment but enjoying the lack of side effects, I am never happy.

@Lunificent I am using baby shampoo as my poor scalp is still sore and my hair is coming through really soft and fluffy, like baby hair really! It is growing really well but only on the top which looks a bit strange and I am still not confident to be seen without a hat.

The consultant decided against a biopsy on my liver nodule until he has more information on what it may be. He is concerned it may be a haemangioma so I had an MRI on Saturday. I am waiting to get the results of this and still may need a biopsy but am hoping it is something harmless. Once this is resolved, I can go onto the PARP. I am back to the waiting game again .

I've just been 'pinged' so self isolation for me, DH and 8yr old. I'm due to go in for my 3 weekly infusion on weds so I guess that will be delayed. I wouldn't go in and risk spreading anything to people more vulnerable than me.
My hair has grown back thick and curly I used faith in nature shampoo and conditioner. Everyone loves my curls I hate them, I see a cross between Prue Lieth and Jeremy Clarkson when I look in the mirror!

@thereisonlyoneofme I forgot to ask you, which PARP are you going on? Mine will be niraparib and also I might need Avastin with it too.

Thanks for replies re: my hair re-growing. My natural hair is like pubic hair (think Phil Spector) before it’s straightened. I’m intrigued to see whether it becomes even curlier when it comes back. I think it will come back white!

Hi can I join?
Just been diagnosed with breast cancer stage 3 (waiting full biopsy results). I'm looking at a full mastectomy on the left breast (as I had breast cancer 9 years ago same breast with chemo and radiotherapy - so they can't redo radiotherapy). But, I'm BRCA2 positive so probably should have the right removed as well. I had to have my ovaries removed in 2020 due to raising CA125 levels as well. So it's all a bit pants and I'm waiting til Thursday to find out what the plan is.

@Oncewassmith Welcome to the thread no one wants to join. I hope your plan is sensible and your journey is smooth.

@Lunificent I didn't lose all of my hair even on FEC and what is left is growing. I wash it with a coconut shampoo every day just to keep my scalp clean.

Welcome @Oncewassmith As you say, 'tis pants indeed. I had a mastectomy on the left side several weeks ago. Will you go for reconstruction?

@haunteddishcloth yes I'm hoping I'll be able to have it all in one go. To be fair - I have known I needed to woman up and have a total prophetic mastectomy since last time.