Cancer Support Thread 98: support for those diagnosed and going through treatment

[FcukBreastCancer]

Hello 👋

Thanks @Ventressjust feeling it today! Love the name - Star Wars fan?

@cantbelieveIamhere @Pieceofpurplesky @Ventress I’m so sorry about the side effects, you are all warriors. Mine pale by comparison. I also have a reduced dosage of that lovely taxol. I don’t want to complain because I’m afraid the cancer will start spreading but know I will if I have to.
Our “Francis” passed away 3.5 years ago. We still grieve. I don’t think there will ever be another dog like him. I feel all your pain. I would love to foster another dog but the family just can’t bear it. @Pieceofpurplesky Stay strong! 25% is still good and life is hope (and hope is life!) In December it will be 3 yrs since starting chemo. Still smh. Hang tough everyone. Prayers from across pond. PS for Christmas one of my daughters gave me a t-shirt with a picture of Francis. Made me cry!!!

Come here and vent @Pieceofpurpleskywe will support you and we understand the feelings you are having 🤗 the bad days are absolute pants, we understand.

My boy was a big fan of Star Wars clone wars as a child - good spot!

its good to “see” you @SbmppHow are you doing? Reduced chemo is fine, particularly after 3 years!

I understand about Francis. Our Luna is a year next month. We can’t be here so we are going away for a couple of days )fingers crossed). It’s so difficult when we lose our beautiful companions ❤️

@ventress - about diet - I added flaxseed to my diet and put it on cereal, its supposed to be good for you.
Other than that no one in oncology has mentioned diet or supplements or anything. I found a chap on youtube called Dr William Li and he writes and talks about foods that can help you improve your odds against cancer - and does back it up with case studies - walnuts was one thing I remembered and I love walnuts so am eating more of those too.

I feel bad for moaning about itching because I think your side effects sound far worse so I hope that you can get things sorted out, dose reduce or whatever as you have to have some quality of life - I have my fingers crossed that there is a solution for you.

My oncology person isnt a real one shes a physicians associate and side effects are greeted with a sad smile, she writes it down and she suggested fexofandine but the gp gave me much more information about it - prescribed a higher dose and said i could double up on it which she didnt mention at all. I end up doing most of the research to see what might work as she cant be bothered its almost like that is what you have to put up with because you have got cancer.

@Sbmpp a tshirt with your doggies picture on - no wonder you cried, I cant even look at photos of Oscar yet and I need to so that I can get some larger ones printed for our walls.

@Pieceofpurplesky dont think about percentages you just have to go for it and see what occurs - in the meantime new treatments can come along and change everything.

Have a good weekend ladies of the forum, carpe diem remember.

Thank you @cantbelieveIamhere. DS has a lot of flaxseed (he’s doing the protein shake thing) I’ll also have a look at dr William Lee. I like better odds 😀 I love walnuts too.

Goodness no, please vent about your side effects- they sound lousy! You should have a better team than you have. At least your GP is decent! Do you meet them regularly? I had a ct scan last week so I expect the oncologist to talk to me about this (and the chest drain I had) when I see him next week. I’ve also got a call with the nurses and expect them to to tell me about my blood test and my Zoledronic acid infusion. I don’t think I’m asking too much but I do think your “team” sound lacking. Can you move to a different team or area?

you have a great weekend too @cantbelieveIamhere. Carpe diem indeed!

Oooh flaxseed is quite nice on vanilla ice cream 😀

have a good weekend all 💐

@Ventress thats a good idea, I will try that! Hes written a book called Eat to Beat Disease which I got from the library - but most of his tips are on youtube too.

That’s great, thanks @cantbelieveIamhere. I made (well DH did under my direction!) some apple, walnut and flax seed bran muffins. Rather tasty 😊

off to the hospital today. An early appointment for my blood test then review with my oncologist where I’ll bring up the ct scan results and the palmar plantar problems with my feet. I am still very wobbly and fell in the bathroom (even with my walker) this weekend. I have a lovely black eye where I fell which I’m rather showing off 😊

i hope you all had a good weekend, carpe diem! 💐

@cantbelieveIamhere

Ive had wretched reactions to the phesgo as well.
I have a horrible rash, at the moment confined to the backs of my hands, but creeping up my fingers and wrists.
It it bright red, looks like a bad sunburn and at times is incredibly painful.
I have steroid cream and anti histamine which they have upped once but it doesnt seem to do much. It had started to clear up last week - but then I had the next injection on Thursday and it flared up again.

@ted27 sorry to hear you are having similar problems with phesgo - at first I was led to believe it was the after effects of chemo, but its now 2 and a half months since my last chemo and its definitely phesgo.
I am using a cream by aveeno called dermexa which is helping (3 times a day) and antihistamine - fexofandine, my gp said its possible to double up or even treble the antihistamines but I havent done so yet. He has prescribed the higher dose. Check which antihistamine you are on, and yes after my last injection I had a terrible evening of itching, its like being stung by stinging nettles and gets very sore but no rash. It also wakes me up if I manage to get to sleep.

Also ice packs help, other than that not sure what else we can do, I was offered gaberpentin but not keen to take those - yet.

Let me know if you find the solution! I am also keeping a record of when its bad so I can see if there is a pattern so I can be prepared, thinking of doubling dose on phesgo injection day.

@ventress - the muffins sound delicious
I hope you get some answers today so that you dont continue to wobble and fall about your home!

@cantbelieveIamhere

I have the aveeno cream, a steroid cream and a cream prescribed by the Dr.
I 'm also on fexofandine
Im having weekly chemo plus phesgo every 3rd week on Wednesdays
I have quite a clear pattern - Thurs and Friday relatively ok, energy levels start to drop on Friday evenings, Saturday a wash out. The rash came out two days after the second phesgo injection, so it had to be either the phesgo alone of the double whammy of both drugs.
I had the 3rd phesgo last Wednesday and it flared up again over the weekend.
The pain can be quite intense, worse at night

It looks like a burn . The photo doesnt quite do justice to how red it gets.

@Ted27 ouch - yes mines worse in the evenings too, but no rash like yours, it does look sore. I am finding fexofandine gives me headaches every morning which is why I havent doubled dose yet but I am going to do that for next phesgo injection.
The unit told me I couldnt have the higher dose unless I had a rash but gp was happy for me to have it and also to use more than stated dose. He was very sympathetic but my oncology person was not.

@Ted27 I’m so sorry. it looks so painful 😣

Oh @Ted27, that looks painful 😥

I can understand why you don’t want to increase dosage @cantbelieveIamhereand why the phesgo is such a horrible treatment. 💐 for you both.

I had a positive hospital meeting I think - it’s hard to know sometimes! My cancer marker is down from 3k+ to 1k+ (that’s got to be okay?) and my liver is less swollen than the last scan showed (that’s got be good right?) Not sure about the brain cancer as I’ve just had the one head MRI but my oncologist is going to arrange regular MRIs from here on. He said the reduction in “brain fog” indicates a reduction, or at least a stabilisation, of the cancer (good, yes?) The spinal tumours appear better (on the ct scan ) as they are bigger but more calcified (hmm, could go either way!)
Finally, the lymphangitis hasn’t really changed so I’m still on the steroids. I wish it could be better but I realise there is not much they can do 😢

Nothing on today - tv and relaxation day! I hope you all have a relaxing day ahead. DS has an a level but it’s the last until after half term next week 🤞

@ventress that all sounds like good news to me, I cant usually concentrate when I go for my appointments and rely on DH to tell me whats been said.

How about your palmar plantar ? Have they got a solution?

Yes relax and enjoy a non hospital day and good news from yesterday, its so nice to actually get some its a shock to the system!

Me too @cantbelieveIamhere. I rely on DH too 😊

For the palmar plantar the oncologist has said to use diclofenac cream and he’ll put it on my prescription when I go in tomorrow for my zolandronic acid and new chemo tablets. My worry was that he’d reduce the strength of the chemo due to the PP but , phew, that didn’t happen. Thank you for asking @cantbelieveIamhere

How are you? How are you @Sbmpp ?

@Ventress I’m doing ok. Had a rough chemo last week. Side effects worse than usual but doing better. I have appts with palliative care and oncologist today. Have had some concerning new symptoms and I just don’t know what to say. I know what you mean about decreasing chemo. I’ve had such good luck keeping this cancer at bay.
My dh is a life saver. I could not remember a thing if he wasn’t there with me.

@ventress I am dreading next phesgo injection actually as I now know its going to kick off the itching in a big way so am in for little sleep.

I am missing Oscar and could easily cry every day but am making efforts not to cry all the time, but the waves come every now and then. I am missing doggy cuddles so much.
I am also nervous about not being on chemo, this is immunotherapy and I am not sure how long I will be able to tolerate it or what happens if ....etc

Good luck with the diclofenac - thats an unfortunate name, but I hope it helps.

@sbmpp sorry to hear you had a rough week - I hope your appointment is reassuring today. My BCN said everyone switches off as they are in panic mode at appointments, so its good that the men are there to pay attention for once!.

I have my first chemo tomorrow. Doubt I will sleep tonight. Feel sick at the thought.

@Pieceofpurplesky

Im on round 8 of 12 tomorrow, because its weekly it seems to have flown by and Im.in the swing of it now.
But the first time is terrifying.
Do you know what you are most worried about, is it the treatment itself or the potential side effects ?
Hopefully you will have lovely nurses like I do who will explain each step to you.
Have you packed a small bag of things to make you feel comfortable or help pass the time. I take a very easy reading book, headphones so I can listen to podcasts, eye mask, my own teabags and favourite biscuits. And my 'lucky ' scarf. Its not really lucky - Im a Liverpool fan and take my Liverpool scarf to remind that I don't walk alone. Ive even got my own mini jurgen klopp.
Daft I know but it makes me feel better.

Hope you manage some sleep and that it all goes well for you

Thank you @Ted27. I have a bag packed with books, colouring and a blanket. Have some sherbet sweets and lots of water. I am just scared as up until now it's been such a whirlwind I haven't thought about much and it's now very real.

I’m sorry to hear about your week @Sbmpp🤗 I hope today is positive. Please feel free to share about your side effects if you want, we are here to support you 💐

the Phesgo sounds very serious @cantbelieveIamherebut that there may be an alternative where they administer the meds in separate doses of each type of drug. I wonder if the might mitigate the side effects for you and. @Ted27? https://www.phesgo.com/

I hope the immunotherapy is good for you. It should be a good replacement for chemo. After all you don’t want to stay on chemo forever as it can be so harsh.

Oscar is looking after you. Please cry if you want to. Crying is cathartic 🤗

DH’s are so useful aren’t they!?

Are you having weekly paclitaxel @PieceofpurpleskyI found my weekly rounds really good. Tired afterwards of course but very helpful. I hope it goes well for you today. Your bag of bits and pieces for chemo sounds lovely @Ted27 my nephew is a Liverpool cc fan too, despite living in Berkshire!

Hospital again for me today. Zoledronic acid infusion plus my “party bag” of new drugs - chemo tablets etc.

good luck today everyone

I’m going to need another chest drain 😢 my bcn has messaged pleural but DH will call them tomorrow. I think this answers my oncologists question about whether I’ll have a new build up of gunk in my chest. I think I see a drain in my near future!

Hope you are all having a reasonable day 💐

Oh no Ventress :). I’m so sorry to hear that. I am sending prayers your way. I’m hoping you are well medicated during (and before and after) your procedure. (As a former nurse, chronic pain pt and now a cancer pt I just don’t see the need for people to be in pain). My day yesterday ended up with my GI Dr. calling with an appt for a colonoscopy. Seriously? It’s a month after the dreaded PetScan.