Cancer Support thread 86 - Stay Positive

[LemonDrizzle10]

New thread as other one nearly full.

@FangedFrisbee

Oh that's horrible. So upsetting and totally unfair.

I wonder if it's due to the public perception of breast cancer being a small curable blip in life?

I have been told (by a Macmillan Citizens Advice worker) how people with breast cancer sail through their treatment, so I was unusual. When she discovered all my hair had fallen out she was surprised - I explained it was from the chemo. She said but breast cancer is treated with removal of the lump and a week's radiotherapy then some years of tamoxifen....

I replied: I had 6 months of chemo, including 4 types of chemo, a year of 2 immune therapies, full mastectomy and removal of lymph nodes and 15 days radiotherapy.

Not everyone with BC has stage 1 grade 1 oestrogen positive do they. But that is the image in the general public I think.

"So it doesn't become a habit" is a completely unacceptable thing to say. So sorry you had to hear that ignorant rubbish. xxx

I have a friend who works in pharma and apparently there are some very good drugs coming down the line which will target TNBC.
I found planning my funeral quite cathartic. I had a low key conversation with the kids about what I did and didn’t want so now they know, which will hopefully take some of the pressure off if the worst happens

@Chocolateismyfavourite very sorry to hear that. Hope they get a plan in place for you soon.

Planning scans all done, I can see the enema/water drinking regimen getting old fast for the radiotherapy. Treatment starting on the 15th so I'm looking forward to a couple of weeks of no hospital!

@Chocolateismyfavourite

So, so sorry to hear that 💐

It is most certainly not fair at all.

Regarding your question in a different message about immunotherapy, I have HER2+++ so am on different medications to TNBC, but I have been on two immune therapies (Monoclonal antibodies Trastuzumab and Pertuzumab) for several months now. I can honestly say they are much, much easier to deal with than chemo was. Fewer side effects for sure. These two can damage the heart, so they do echoes, and there are other serious potential side effects too, but my body finds them more doable than it did chemo. I hope so much that you also find immune therapies doable. x

@TopOfTheCliff

"When I had my total node clearance ( 30 removed) I found a survivor six months later working hard in my armpit. I had to have the poor little thing biopsied to be sure it was okay but it was just doing the work of 30! It is very hard to relax and believe you will be okay after all you have endured but things are going very well for you."

Yes, poor little thing, doing all that work on its own!

Yes, spot on, it's very hard to relax and believe any good news after what I've been through. The BC treatment has gone as well as it could have done so far.

I do have something elsewhere that is being observed because it has potential to be a massive problem if it turns malignant (an internal organ known for its lethal cancer rate), but it is currently pre, so not cancer.

@SummerCycling you are right there is standard chemotherapy which just poisons the cancer cells as much as you can tolerate, and there is the new stuff. Immune therapies are designed to target specific receptors on the tumour cells to stop them replicating or to help the chemo drugs kill them faster. My DD is involved in setting up a trial of mRNA vaccines designed for an individual tumour gene sequence so we can be immunised to our own unique cancer cells and our immune system will destroy them.
This is all very hopeful news as treatment has transformed compared with even ten years ago.

@TopOfTheCliff

Wow, your DD is doing amazing work.

I have been reading a bit about some of the cancer vaccine studies and it sounds like a great direction to go in.

Apparently US companies are avoiding executing clinical studies for cancer in the UK because Brexit has made it harder.... I know this for a fact because one company told me in an email (I had written to ask if they were going to include the UK in their phase 3 study of a vaccine targeting her2). They aren't and the reason was Brexit. They are doing it in various EU countries in addition to lots of US cities.

The trial DD is involved with is a Pfizer/BioTech one based in Cambridge. It was in the news not long ago. Once the evidence for efficacy is out there the NHS starts negotiating on purchasing new drugs and NICE evaluates them so there is quite a speedy process for introducing them into the UK.

That's so great!

The one I was interested in was the Flamingo-01 trial of the GP2 vaccine by Greenwich Life Sciences.

@SummerCycling and @TopOfTheCliff what great messages to read. I am so grateful for all of the clever, clever people out there (like your daughter - you must be so proud!🙂) who are doing super clever things!

Summer - In your message you said you were HER2+++ and I was wondering why the three +? Can the HER2 protein be measured on a sliding scale like oestrogen? I thought it was just a case of positive or negative. Does triple + mean it’s super fast spreading?

Actually I’ve just realised you might mean triple positive. 🤦🏻‍♀️ I’m blaming my chemo fog!

@Whattodotomorrow the HER2 receptor status can be 0, 1, 2, or 3. Only 2 or 3 are considered positive. It doesn’t mean 3 is more aggressive, it means the tumour has more HER2 receptors so can be blocked better by Herceptin.

@Whattodotomorrow

Yes, it is on a sliding scale, but exactly what @TopOfTheCliff said at 22:44, so a narrower scale than oestrogen (which goes up to 8 I think?) HER2 zero or one (+) are both negative results then two (++) is either positive or often considered equivocal; three is positive (+++). So it is mostly a matter of positive or negative, unless you get a score of two.

Mine is indeed also super fast spreading though, due to being Grade 3 (fastest grade). Plus HER2 tends to grow faster than the hormonal types. I think inflammatory is even faster, and maybe TN is too (not sure if that can be generalised because there's also the Grade to consider of course?).

With HER2 you can, like you said, also be triple or double positive. I'm not though, I am HR negative ER-0 and PR-0. I haven't managed to meet anyone else yet with HER2+++ and hormone negative, it seems to be more common to also be HR+ (?)

I did not sleep last night at all. I've decided to get the RCN involved. My arm is very weak and I'm looking at a long old recovery before I'm in a position to go back to work so I need to still have a job at the end of it!

At yoga yesterday women were mainly there with bc, some still having radiotherapy, the conversation amongst them were definitely about a drug they had been given to take orally. Most of them said they were going to stop taking it. What could this be?

Thanks for all the lovely messages, I do appreciate them all, you guys unfortunately know how I'm feeling.
Yes just got CT scan today and get the plan on Wednesday, and find out if it's spread, or not. Please let it not have.
It's horrid to think about dying esp when I've got four children asleep upstairs right now. ( It's horrible for anyone to think about dying, I know) it's just I also think about practical things, like we rent out home and love it here, and I know full well my husband wouldnt be able to afford to rent it by himself, so then I go off on a tangent, what'll happen to them, where will they live, etc etc you get the idea.

Also, I'm definitely genuinely happy for anyone on here who gets good news of any kind, I may not post much ,but I read and, am behind everyone and their journey through this shit show.

@Chocolateismyfavourite I will be thinking of you today with your scan and sending positive vibes.

Thanks for the clarification regarding HER2 scale. I’ve just looked back at my histology report and seen I have a HER2 score of 3…but as Top said…more for the Herceptin to block. Every silver lining and all that! I really ought to invest in the Liz O’Riordan book to educate myself…has anyone read it and is it useful?

@FangedFrisbee you def need HR involved. What he said is outrageous and just shows what a pointless, tick boxing exercise it was with no thought to you and your circumstances.

@EachandEveryone glad you enjoyed your yoga. Do you think the drug they were talking about were the hormone blockers? I was on a Facebook group for BC but have come off it as so many comments were about the negative side effects for AIs.

I hope everyone has a great bank holiday weekend…despite the lack of sunshine and warmth! We had to put the heating on yesterday!

@Chocolateismyfavourite - sending lots of strength. It's so hard when those thoughts start going round in your head.

@EachandEveryone - the women in your class are probably talking about the hormone therapy for BC. The BreastCancerNow forums are full of people with bad side effects (joint pain, depression), and I got myself in quite a state about starting. I think it's partly that it's so long term - 5 or 10 years.

Two appointments at two different hospitals for me today - so about 4 hours of driving and two lots of parking stress to look forward to. I've spotted that there's a park on the way to my RT hospital with 2 hours free parking and it's only a mile to walk from there, so I might give that a go and hope the timings work and I don't get a ticket.

@Whattodotomorrow - we crossed. I have the Liz O'Riordain book but it's a bit out of date now - which is a good thing in a way as it shows how quickly treatment is moving. I know she's working on a second edition. It didn't go into quite enough detail for me but I found it quite helpful right at the start of treatment and helped me feel a bit more positive. I did take from it that I should do some exercise every single day if I possibly can, which I do think has helped me get through treatment.

Positive vibes from me too...to all who need them (and also to all that don't!)

I'm also guessing the yoga guys were talking about letrozole or the other aromatase inhibitors. I have my prescription for letrozole sitting on the side that I've been looking at for weeks. My oncologist agreed that I could finish radiotherapy and then start taking them. Radiotherapy finished on Tuesday and the prescription is still sitting there unfilled. I know I've been super fortunate at having my breast cancer caught so early and recovering from surgery ok and not reacting too badly to radiotherapy (so far) so I'm dreading starting something that seems to make lots of people feel generally rubbish for years and years when I can't really get a handle on exactly how much benefit in recurrence risk reduction it will actually provide. I guess the thing to do is to actually start taking them, see if they affect me and then decide. Anyone else taken AIs and been ok?

Another one who thinks the yoga chat was about hormone therapy. My tamoxifen has been sat in the cupboard for a month. I just cannot bring myself to take them. I can’t even pick the box up without bursting into tears.

I think around 40 percent of women on hormone blockers stop early due to side effects. I found I got such severe joint pain on anastrozole I begged to switch to exemestane which was slightly easier. What has surprised me is that after chemotherapy/surgery/ radiotherapy for cancer no 2 and a break from exemestane I am now getting the joint pains back despite not being on the tablets. I wonder if actually it could be the cancer treatment that causes the joint pains and the AIs get the blame? It is hard to explain in women who didn’t have chemotherapy though. But a lot of my friends of the same age moan about their joints too so perhaps it is just our age?
I would recommend at least trying a month on the tablets @WorryMcGee . You can always stop them. There are plenty of people who don’t get side effects and they definitely reduce the recurrence risk.

Ive got tingly palms and soles today but not too bad.
Top

It's the joint pains with hormone therapy that worry me the most. I can't quite believe a year ago today I was starting a 6 week, 1000km hike across Spain when I walked the Camino Frances. The thought of something stopping me walking just fills me with dread. Mind you, I've just been to 3 pharmacies this morning to try and get my prescription filled, and none of them have letrozole in stock and don't know when they will get any. I'm not sure whether to be frustrated or relieved.

I think I’ve said before that I’ve just started zoladex plus letrozole. Side effects minimal so far but I’ve only taken 21 tablets. 3339 to go. The impact on recurrence is potentially greater than chemo so I’m determined to give it a good go. It’s a very personal decision though. For some people quality of life just becomes too compromised. For me, my blackest moments come from knowing that if I’d gone to the dr when I first found my lump instead of putting it off for months, my prognosis could have been better. I get a kind of spiralling terror when I think about dying knowing it could have been different if only…(though obviously it might not have made any difference). I don’t want to add any more ‘if only’ into that mix. I need to know I’ve tried everything.

@dotty2 do you know which manufacturer makes your letrozole? I've heard it can make a difference to the side effects experienced. I've worked as a scientist in the Pharma industry for years and years so I know it shouldn't make a difference, but according to some of the forums it does.