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Triple negative/ Treatment not working

15 REPLIES 15
Lancashire Lass
Member

Re: Triple negative/ Treatment not working

That’s news indeed Rubyjane, I too will take note of that, as I fear I am coming to the end of options at my hospital. I didn’t have either of the markers for the two trials at the Christie which was disappointing. So where to go from there?

Thanks for the info

Lancashire Lass

Loulou1007
Member

Re: Triple negative/ Treatment not working

Hi Lancashirelass

I am sorry to hear your news and the way you have been treated by the Oncology Dept, where is the patient care!!! I am aware that at the Royal Marsden and there must be other Trusts up North also doing trials with Immunotherapy IV. I am ER positive but have a dear friend who is TN and no chemos have worked so far (Capecitbine) so she is on the trial at the Royal Marsden only just started. Please asked about this as many trials with this on-going since last August 20 it could be a treatment for all cancer patients. Keep strong keep positive. I was told by a Nurse that it can take a while to find a treatment that hits the cancer but that there is one its just finding it. Lou x

 

kltg
Member

Re: Triple negative/ Treatment not working

Hi Jenny

you are certainly going through the mill. Very briefly I had primary breast cancer in 2005 with pre and post chemo, double mastectomy and radiotherapy and then bladder cancer appeared in 2017 with surgery and immunotherapy. I then had secondary breast cancer on sternum. I had targeted therapy of aberciclib and Letrozole and also cyber radiation.  After two years they found eight further tumours in my chest. After research I went for a second opinion at Royal Marsden - an amazing oncologist who is very much involved in research - Professor Johnston. He decided to carry out a Garden 300 blood test which identified the cancer. His had to be sent to America and we were prepared to pay for it but got cover in the end. They found out that the cancer had mutated and he then changed meds. I will be having a PET scan in December. So fingers crossed but my friends daughter has triple negative and they have contacted Marsden as I think but don't quote me they are doing trials at the moment. Might be worth a phone call. You can have a telephone consultation with him which does cost but I think worth every penny. After this treatment I am going to repeat the consultation. 

good luck and hope this helps in some way. 

Hugs

Rubyjane

 

Lancashire Lass
Member

Re: Triple negative/ Treatment not working

Hi,

Big decision yesterday. The plan was that after cycle 3 of Gem-Carbo I would have a CT to see if there was any progress before having any more. The CT got delayed and then my oncologist went on holiday and doesn’t appear to have a deputy. The CT doesn’t get reported for a fortnight. So who was to make the decision about the 4th round? Nobody apparently. I felt completely abandoned. 
My husband and I talked it through and felt that as the chemo made me so very ill that if it wasn’t working what was the point. If it was working could the next cycle be safely postponed until we knew for sure, but who to ask? My hospital doesn’t have a specialist secondary breast care nurse but the breast care nurses were my only point of contact. I was lucky as the nurse I spoke to was great and her response was that I could delay further treatment without  problem and if she were in my shoes that’s what she’d do.

The next hurdle was telling them on the chemo suite. In fact they were ok with it so I’ve got a breather until the results are in. Some extra recovery time which I’m relieved about.

Only downside now is that somehow my husband has got a cold. Where from we can’t imagine. He only goes shopping or to a bar to collect a drink and he always wears a mask. Trouble is more than half of the country has abandoned mask wearing, inside and out. Nobody seems to understand that the mask is to protect others not themselves. Another failure of government information.

If I catch it I can’t imagine what the outcome will be. Dangerous times.

Helen

Steval
Member

Re: Triple negative/ Treatment not working

Hi there,

You seem to be doing very well despite everything. It’s so tiring and you just need to run away some days. I just wish the anxiety would leave me alone……how do you ignore everything and switch off? I’ve not mastered that….
You’re lucky to be involved with the Christie…..such a good reputation. Good luck with that.

you’re right, we are strong, but it’s blooming hard work!

let me know how you get on with alternative therapies. I’ve had acupuncture for something else and it was quite effective. My friend swears by it and the chap in charge of pain management at my hospital used it for his shoulder. Worth a try.

keep in touch!

Lancashire Lass
Member

Re: Triple negative/ Treatment not working

Hi,

I find this forum a bit confusing as I’m never sure who people are replying to 🥴😄 Embarassing to reply if you’re not the person in question. Here goes anyway. How am I holding it together? With difficulty, I’m very up and down, when I’m immediately post chemo and absolutely whacked I cry a lot of the time and feel ready to give up, there’s only one thing on my mind  ….. the end. When I start to feel physically better I get emotionally better but I think it’s got something to do with just ignoring what’s going on despite having constant reminders! I want to do research into treatments and alternatives but I can only do that for so long before I need a good distraction away from cancer, or I would go mad.

To be honest I’m not sure how all of us going through this don’t go completely bonkers. We’re so much stronger than we think we are. How about you?

I’m finding the pandemic makes it all so much harder as I’m a people person and I miss meeting up with my friends. I find not socialising is playing havoc with my mental health.

Lancashire Lass

Steval
Member

Re: Triple negative/ Treatment not working

Hi there,

im so sorry to hear you are facing this all again. It’s exhausting isn’t it. How are you keeping yourself together emotionally?
take care

Steval

Lancashire Lass
Member

Re: Triple negative/ Treatment not working

I’ve also just read this thread and wonder how you’re doing. I am in a similar boat, TNBC mets in lungs and liver after a 10 year remission. All I hear is it’s aggressive and resistant to treatment, so depressing. They’ve tried Abraxane and now Gemcitabine and I seem to get all side effects and no progress. My oncologist says we’ll try Erubilin next but I’m not reading any more positive reports about that either. 
The more I read about trials is that there are hundreds of different “strains” of breast cancer with very specific genetic make up and each of us will be lucky if they alight on our particular one. I’ve been put forward for two trials at the Christie in Manchester but they are testing my tumour for the specific markers which are apparently rare, before I can proceed to the drug. All the waiting we do is harrowing but I’ll let you know how it goes.

In the meantime I try all the complementary therapies I can get access to. When orthodox medicine has nothing to offer what does one have to lose? I’ve heard acupuncture can be beneficial for peripheral neuropathy.

Good luck with it all, best wishes and a huge hug,

Lancashire Lass

Steval
Member

Re: Triple negative/ Treatment not working

Hi there,

just reading this thread and wondering how you are doing?

Steval

Jaybro
Member

Re: Triple negative/ Treatment not working

What a horrible experience. I made a point of requesting a specific oncologist when I returned to the fold after only two year and he’s very much on the ball but thwarted by Covid-29. My MBC has been identified at the triple negative one, chiefly in my eye socket and in skin lesions on my neck and chin. My scans are ambivalent about my endometrium, some left-behind lymph nodes and maybe my sternum but little ever shows up on MRI and CT scans. Hopefully my next scan will be a PET scan.

Like you I failed the immunotherapy entrance exam so I’ve been put on Capecitabine (of which I’ve only had three doses so far, three more than I expected given the size of the tablets). However, my oncologist had been discussing me with a colleague who, they believe, has the perfect drug, It has finished the research phases so I can’t join and is simply waiting for its licence. Unfortunately all attention is focussing on covid, so my oncologist can’t be licensed to use it. His point is, there are several new drugs either waiting to be licensed or close to completing research, giving me greater optimism that he will adjust my treatments as new things come along.

Unlike you I steer clear of Google. What I learned from it last time would have been more sensitively put by a breast cancer practitioner who knew my circumstances. Like you, I don’t wish to know my prognosis - there’s nothing I can do about this cancer except comply as far as I can and trust my consultant, I’m fully aware that this treatment might not work for me. But I’m led to believe that there will be other treatments in the future which does rather make me optimistic.

Mentime, I’d love to know how you get on with capecitabine so please reply when you’ve something to report?

Jan

JIF
Member

Re: Triple negative/ Treatment not working

Hello Angel Eyes,

Thanks so much for your message. Good of you to take the time to reply.

Hoping that all is well with you.

Thanks again,

Jennie X

Angel Eyes
Member

Re: Triple negative/ Treatment not working

Hi Jennie, 

So sorry you are going through all this. 

I hope someone will be along soon who can help.

 

Angel Eyes x

JIF
Member

Re: Triple negative/ Treatment not working

Hello Pat,

Thanks so much for stopping by and for your kind comments - much appreciated. I think I’m learning to live one day at a time & absolutely, have asked for treatment to continue.

Biggest hugs, 

Jennie X

Shi
Community Champion
Community Champion

Re: Triple negative/ Treatment not working

JIF ❤️ Do look up metupuk, they might know of other options on treatments available to you. Also MD Anderson in Texas worth keeping eye on and their treatments and asking your onc about them too ❤️ You are amazing ❤️💕💕Shi xx

Justplainpat
Member

Re: Triple negative/ Treatment not working

Hello @JIF 

Goodness, Jennie! What a rational, eloquent and generous post from someone who clearly has so much on their plate. I am afraid I cannot offer any helpful or informed answers to your questions and observations, but neither could I pass by without acknowledging your predicament and offering a virtual galvanising hug. I do hope that others will soon be along who are able to give more helpful advice. 

Good luck with your treatment and stay the powerfully strong and positive individual that you so clearly are.

Love Pat x

 

JIF
Member

Triple negative/ Treatment not working

Hello all,

Hopefully, my post finds folks having a sunny start to the day - Spring is definitely here or is it Summer?

I've posted a couple of times before and received some helpful replies and I also look at all the new daily comments as they appear as they're often inspirational and help to lift my mood and spirits. 

As a tiny bit of background, I'm a normally healthy 54-year-old who enjoys playing sport (swim, cycle, squash, ski etc.) & who was diagnosed March 2020 at stage IV (metastatic lymph node in my thorax).  In the beginning, there was a little bit of progesterone receptor positivity (tamoxifen was started but quickly abandoned as there was progression on scans), although recent samples from thoracic surgery pre-Christmas would suggest that I'm fundamentally triple negative.  Last year, I went through pre-surgery chemotherapy, mastectomy, axillary node dissection (only 1/8 nodes had been positive & the one that was cancerous had "responded" to FEC-T) and reconstruction and latterly VATS (video-assisted thoracic surgery) to remove the lymph node (which had doubled in size during chemotherapy!) and also (unexpectedly) a small portion of lung which was cancerous.  Fast forward a few months and I had another scan, a couple of pleural effusions appeared which were causing problems with shortness of breath etc.  A bit of a saga with drains etc. but had an in-dwelling/semi-permanent one placed and things settled down and I was started on Eribulin.  I was told at that stage that I had some areas in the lungs/ pleura (don't know number/aggressiveness - I didn't ask my oncologist generally doesn't share this detail and has always says he treats the clinical picture) and a larger plaque (3x5cm!) over my heart region which I find terrifying!  The area over the heart has had five treatments of radiotherapy.

I was mid-third cycle of Eribulin, had another scan and then a follow-up on Monday with my consultant - basically, not good news.  I was told that things had progressed (not sure how much as he didn't show me the scans - he never does as I don't think he's great at reading the images and relies on the reports) including the area over the heart which had received radiotherapy.  His conclusion was that the tumours are both chemo-resistant and radio-resistant.  He then gave me two options - stop all treatment or look to another type of chemotherapy.  He made it very clear though that he thought that other types of chemo probably wouldn't be any more successful and I know that he's said this before, i.e. if the first type of chemo doesn't work then it's unlikely that others would work either.  (I'm not suitable for immunotherapy as I don't have the right receptors). He strikes me as a very experienced consultant but in the 12+ months of meetings, I've always found him a bit doom & gloom & I've never come away with the feeling of we can help make this better somehow.  Anyway, I said I wanted to try a different agent (Eribulin is the first chemotherapy that I've had since pre-surgery so I thought it was a bit soon to give up - is this budgetary or is there something darker going on with my cancer?  I wonder as a skin lesion has appeared above my left breast region in the last couple of months (they're assuming it's a metastatic lesion) which has grown quite quickly; so maybe this is the same as what's happening internally?

I'm being changed to capecitabine and I've queried (I sent him an e-mail on Monday later on after I'd managed to calm down & phoned his secretary to make sure she'd go it) if there are any other options for the area over the heart, e.g. thermoablation, cryosurgery, internal radiotherapy (yes, I've been googling options!), referral to the cancer centres in Edinburgh or Glasgow (I'm Dundee-based; a smaller city with a small unit - maybe other options in the bigger centres but I'm doubtful!).

Can I ask if others have come across this slightly negative approach, i.e. this treatment hasn't worked and so now I'm sceptical that anything else will? I mean there may be good reasons for his thinking but he hasn't shared the thought process with me and I'm now just left feeling I've got a death sentence.  The other thing that the team keep asking is if I want to know my prognosis/ how this all goes.  I've said no so many times now as I genuinely don't feel I want a figure in my head which will only worry me (my will/POA etc. are all in place & I'm in the process of retiring on health grounds) but the very reason I'm constantly being asked this worries me now!  

Otherwise, has anyone ever looked at some of the private companies (Oncologica UK) that offer to "match" your tumour sample to a range of drugs to find the most optimal one?  I'm just looking but it may be the drugs haven't gone through trial stage/ may be unavailable in the UK etc.  I've asked my consultant for his thoughts on this too and the company have offered a free chat to go through all.  Yes, I'm grasping at straws!

Anyway folks, all have a lovely day wherever you are and hope to see some posts on the forum soon.

Cheers,

Jennie