lines of treatment

[Jessie55]

may I ask women in the UK how many lines of treatment we get on the NHS? I read of people in US with 9 or 10 but think we have less options in uk? Thanks

PS I’m on no 4 and getting worried that 5 might be maximum

🙏🏻

[Andersl]

Hi there, I'm away at the moment so i don't have the info to hand. I'm stage 4 de novo PR/ER/HER2+. Lump found December 2018(almost 5 years ago)

From memory (which is not always reliable) I'm on my fifth treatment (Enhertu). When I relapsed again in June this year I was told there's currently one more when this fails. That may have changed. Its something I want to ask my consultant.

I should add that I've also had radiation to the membrane of my brain and Gamma radiation twice to treat brain mets (very successful).

Thanks for raising the question, it's prompted me to ask it too

I may also contact NICE to ask the same question as they're the deciding body on what treatments that are approved can be given to NHS patients.

Kind regards

Louise

[Jessie55 in reply to Andersl]

I’m going to try and attach what I think are NICE guidelines

[Jessie55 in reply to Andersl]

Actually I can’t attach the diagram . Might be able to DM you

[Andersl in reply to Jessie55]

Ok thanks.

[Ntash01 in reply to Andersl]

Andersl- I’m curious re your experience of Gama Knife, I’m waiting to get this done and am obviously curious. How did you find the experience? Any tips? Where did you have it? I’m due to go to a hospital in London - just waiting for a call. Hopefully no changes in that area so treatment plan does not change.

Nx

[Andersl in reply to Ntash01]

The experience was better than I imagined.I had mine in Bristol. The process was very streamlined and well thought out.

I had to be there for 7am. There were about 3 other patients. I had a scan so they could plan the treatment and then the titanium frame fitted. I'd been warned that that could be very painful so I prepared myself using mind over matter. To myself I chanted "it's only a few minutes. It's only a few minutes ". And it was soon over. Once it's on it doesnt hurt. Be prepared for some blood where it is fitted tightly to the head. That stops quite quickly.

Then I went to sit in a dedicated waiting room with the other patients to wait my turn.

I really enjoyed the opportunity to chat with others going through the same procedure. For some it wasn't the first time.

We're asked to bring our own lunch.

When the frame is on drinking can only be done through a straw. Eating a sandwich is possible.

How long you're under the Gamma radiation depends on how many mets there are to treat. The last time I was lying on the treatment bed for 1.5 hours. I slept almost all of that time!

When it was over it wasn't long after the frame was removed that I was free to go. I felt fine. No after effects apart from some soreness where the frame had been attached. Paracetamol was all I needed

Overall I'd say, 'walk through' the process in your mind and tell yourself "it's only a few minutes. It's only a few minutes..." when you have the frame fitted.

Take it easy for a few days after and follow any advice from the hospital/specialist team.

I've had it twice now and I wouldn't blink an eyelid if I was told I needed it again.

If you have any more questions feel free to ask me.

All the best

Louise x

[Ntash01 in reply to Andersl]

Hi Louise

Thank you so so much for this, I am now mentally prepared - appointment schedule for Thursday at 7. I’ll pack a lunch… hubby coming with me, more for him than me! I’m thinking the worse experience on this journey so far was having my port was fitted… just overwhelmed with emotions once it was done nothing to do with pain or discomfort - the team were amazing. I don’t really feel it now and I don’t really look at it.

I'm happy to sit in a room with others, I can imagine how interesting that would be. I think people I meet everyday would be shocked to know my diagnosis - I look and act more chipper than most 🤣. But we know how things change from scan to scan… c’est ’our’ la vie.

So encouraged that you’d have it done in a heartbeat again to be honest…. This shizzle (2 of them) needs sorting asap no matter what, praying no change and it can go ahead, that’s my biggest worry! Tc

Tash x

[Rafflesbabe in reply to Andersl]

Hi Anderson,Are you getting Enhertu privately, I didn't think NICE had approved it.

[Jessie55 in reply to Rafflesbabe]

It is approved as far as I’m aware . About the same time as Piqray was

[Rafflesbabe in reply to Jessie55]

Thank you Jessie55

[Andersl in reply to Rafflesbabe]

It's approved for metastatic breast cancer. I think the approval issue is for other cancers.

[Rafflesbabe in reply to Andersl]

Thank you Andersl, that is interesting to know. I was told by a private consultant , it's 10k a round and would have to look into applying for assistance.

[Andersl in reply to Rafflesbabe]

If you google N.I.C.E and then use the site search for Enhertu it will give the full information. What the private Dr told you should be reported. Its unethical to tell patients that.

[PJBinMI]

I'm a l o n g timer with MBC, in the US, and have never heard of treatment being limited to a specific number of meds! The profile of cancer cells (E + or -, same for P and her2neu) does "limit" treatment to what works. Some medical insurance limits how much $$$ it covers. (I'm on fourth line of treatment, in 19 years plus with MBC)

[Jessie55 in reply to PJBinMI]

That’s my point. We have a different system in the NHS; I’m thinking more limited options. Of course, its all free

[Andersl in reply to Jessie55]

Yes. NICE basically evaluate the effectiveness and cost then decide if they'll approve it for use by the NHS.. that approach stops the UK throwing money into drug developers hands where treatments are not shown to be very effective; on the other hand some patients may benefit and they're being denied the drug. Scientists are finding better ways to define who will benefit from new drugs.

[Jessie55 in reply to PJBinMI]

you have done amazingly well 🙏🏻

[Andersl in reply to PJBinMI]

Can I ask what drug you're on now? And have you had metastatic brain disease?

[Jessie55 in reply to Andersl]

Done Ibrance then Piqray then taxol. Now starting Eribulin… 3 years

[Andersl in reply to Jessie55]

I've had taxol but none of the others

[Jessie55 in reply to Andersl]

Not brain. Lungs and liver

[PJBinMI in reply to Andersl]

I am currently on Xeloda, first real "chemo' I've been on. Initially cancer was E + but earlier this year tested as triple negative hence the Xeloda. I got almost five years from Letrozole, then over 9 years from Fulvestrant, then about four years from Exemestane. I had a small met on surface of cerebellum and it was treated with stereo-tactic radiation, a very interesting experience! About six or seven years ago. I just had an MRI yesterday and there is a reoccurrence of a brain met near where it was before--Rats! My onc is on vacation this week and the plan was/is for her Nurse Practitioner to see the MRI results and then consult with others at the cancer center, so I imagine I will hear from her very soon. Don't know if any of this helps you....

[Nocillo]

I’m not in the UK, but I certainly hope you get as many as you need! What a crazy world we live in!

[Beryl71]

It may depend on your health area as each has their own treatment protocols. I'm on my second and my GP suggested that if another change is necessary I get a referral to the Royal Marsden. Good luck! X

[Jessie55 in reply to Beryl71]

Aah that’s very interesting 🙏🏻

[wendle3007]

I don't think I've ever given any thought to the idea that they might run out of options for me. I'm still on my first line (Palbo + letrozole) which I've been on for 2 years and is still apparently working.

I wonder whether anyone who has run the whole gamut of options is able to take part in drug trials as their next option? There's a chance this might work for them and they would be helping future patients.

Best wishes to you and all who are concerned about options.

[LorryLou]

I was not aware we were limited to the number of treatments on offer on the NHS

I was on Ibrance + letrozole foe 2.5 years then it stopped working. so was put on oral Capectabine 3 x 500 tablets twice a day. but after 3 cycles an MRI showed this has not worked.

They are now looking at starting me on intravenous paclitaxel. 3 weeks on 1 week off. Has anyone any experience of this Chemo?

[Jessie55 in reply to LorryLou]

very similar! Ibrance to Piqray to taxol and now to Erubilon. IV paclitaxel was ok - tiredness but not much else except it only worked for 4.5 months. X

[RachH20 in reply to LorryLou]

Hi, I got 2.5 years out of letrezole and palbociclib and had a progression, I was given choice of cape or paclitaxel, just had my first IV paclitaxel today, took about 2 hours with pre meds, anti sickness and steroids. No reactions feel ok now, bit thirsty and tired. Will see how the next days go xx

[LorryLou in reply to RachH20]

Please let me know how you get on. Waiting to hear when i start.

[RachH20 in reply to LorryLou]

2 days post first IV, only side effects for me are feeling like you have a slight hangover but functioning. Dry mouth and heart burn. Will keep you updated.

[TammyCross in reply to LorryLou]

In the US, you probably would have gone onto anastrozole or examestane, and Verzenio or Kisqali. Cape and chemo (oral or infusion) would be down the road.

[RachH20 in reply to TammyCross]

I know it’s annoying they won’t do that in the UK, try all different combinations. I tried both kisquali (liver toxicity for me and had to come off it) but ibrance worked for 18 months, wanted to try verzenio.

[TammyCross in reply to RachH20]

Oh that makes sense. They will let you try another CDK4/6 inhibitor if you can't tolerate one, but will not let you try another if one of them fails.

[TammyCross]

I believe, from others' reports here, that the NHS doesn't allow running through the three different combos of AI's + targeted. There is not enough evidence that, if one AI + targeted fails, another might work. In the US, they do cover going through letrozole, anastrazole and exemestane sequentially, as well as Ibrance, Verzenio and Kisqali. And they do seem to work, but it is anecdotal.

[Jessie55 in reply to TammyCross]

Good information 🙏🏻🙏🏻