August 8, 2019

[SusieIM]

Hello everyone,

I saw my oncologist last Monday. I left the office feeling depressed for the first time in a while. She is a good doctor and she really is trying to help me. What it is, I am on my third kind of treatment; first letrozole/palbociclib, then everolimus/exemestane, now Faslodex since November 2018. The markers have gone up and down, recently gone up, the MRI shows progression. It isn't extreme progression but nevertheless progression. I heard about the new Piqray treatment. I mentioned the idea to her. She looked it up, she likes the idea because piqray is for the kind of breast cancer that I have; but only thing is, it is mainly for women who have not had treatment before. She suggested staying on faslodex, combining it with priqray, give it a try, see if it helps. The end of this month I will start on it, keep me in your prayers. I could tell the way she was talking, that I might be running out of options, but I will try to stay hopeful. I will let you know how things go.

[Marieleb]

Hi Susie

Sounds like we are having the same journey. I started Ibrance / Letrozole as first line of treatment last August and moved to Everolimus / Exemastane last month... Will find out if it is working end of September... Dr mentioned Alpelisib ( Pikray) a couple of appointments ago as a good alternative for PIK3CA mutation... Sadly having mentioned it they had to tell me the trial was closed for " my type "... Sounds like it is a good alternative and you are definitely getting the latest treatment available... I think we all know that as we go down the list of available treatments the likelihood is that they might work for a shorter period than they would as a first or second line of treatment but there is nothing set in stone, especially with new treatment with still limited available data... All the best on your journey and keep us posted !

[Survivornow in reply to Marieleb]

Don't give up! Keep fighting and doing your own research. Sadly, doctors don't have the time we do to keep up with all the latest research. Prayers!

One of the medical reports I read said that when Ibrance stops working (it appears cancer morphs and becomes immune) , research found that taking 7 weeks off and then restarting the medication triggers it to work again. I've wondered if it's not the same for all cancer fighting drugs - and makes sense. It's the same with antibiotics, so why not cancer drugs? Keep fighting!

[Marieleb in reply to Survivornow]

Yes I read that too. Sadly I have now moved to another treatment and will not get funding for the same treatment twice... Anyway I hope I will get a decent time on Afinitor ( sounds like you had 6 months on it)... Please keep on updating us I feel like you are going through what I am going through 12 months ahead! Thanks again for sharing...

[SusieIM in reply to Marieleb]

Yes thank you!

[LouisaMay]

Hi Susie, So sorry to hear that things are not going so well at the moment, the road we must travel is certainly a rocky one! Have you considered fenbendazole?

Have a look at the link below which is Joe Tippen's story. I found it inspiring and have started on fenbendazole this morning. Best wishes x

mycancerstory.rocks/single-...

[MyMiracle13 in reply to LouisaMay]

Hello. Can you please update me on how you are doing on Fenbendazole. I will be starting Fenbendazole next week when my order arrives. I too will let you know how it works for me. What supplements are you taking with it? And what conventional medication are you on right now?

Maria

[LouisaMay in reply to MyMiracle13]

Hi Maria,

Of course I'll keep you updated with pleasure and look forward to hearing your progress. I have just swallowed my 3rd dose. (I chase it down with water then a spoonful of olive oil). Will take a break now for 4 days. No problems or side effects thus far. I will probably not know much for certain till my next scan which will probably be next March. I have lobular MBC to bones with spots on liver and a 'hazy mesentery' along with a few skin bumps and some cancerous cells in my armpit. I am lucky to be symptom-free at the moment and my tumour markers are mostly on a downward trend from an initial 73 to a current 42.

In addition to Letrozole and Ibrance (and of course now fenben), I take the following: baby aspirin, fish oil capsules for omega 3, milk thistle until I ran out recently (will now give a break for a couple of months). I get plenty of sunshine but will supplement with vit D3 in winter. I take a good probiotic to keep my gut biome in good health. A raw garlic clove chopped fine and left for 5-10 mins before swallowing (to let the allicin develop which is a kind of natural antibiotic). A few grams of dried kombu most days (for iodine which BC sufferers are often critically low in, but also fucoidin which is supposed to help reduce further metastases and also a full spectrum of minerals and some vitamins). Also a melatonin capsule, it's low dose, only 1.8g but it's all I can get over the counter, I pick it up from Consum supermarket when I'm in Spain). Finally I have just started wheatgrass powder. I will work up to a tablespoon or so per day in water. It has some good anti-cancer effects. I don't take vitamin E or curcurmin as per Joe Tippen's protocol as I am not sure about turmeric and palbociclib together. Nor am I sure about supplemental vitamin E with breast cancer. I may change my mind on those later. I don't take CBD oil at the moment either as it is very expensive. I do however eat loads of olive oil (which has a great effect on my skin as well as having anti-cancer properties). I eat well, mostly avoiding refined white carbs and alcohol with lots of vegetables and fruit, much of it raw, walnuts every day for omega 3 and their specific anti-cancer effect. Dried dates for anti-cancer phenols. But a 'no rules' approach to food. If I want cake or a glass of wine I'll have it! This is no time to be denying myself small pleasures. I have today decided to stop taking Adcal as I believe it does not help keep my bones strong (this is down to regular weight-bearing exercise and vit D as well as avoiding too much dairy) and it does increase the risk of heart attack (imho). I walk fast for a couple of hours at least each day, meditate most days (and feel so much better for it) and have recently added yoga to my weekly routine. Am planning to do a couple of sessions at home in addition to my weekly class.

Sorry for my long post, I am attacking this like I mean it and I will never stop! If I am not seeing real results by my next scan I will consider the COC protocol in addition, as well as Jane McClelland's additional items. I have just bought some Clarityn which I will take for a couple of months at some point in the near future.

What supplements etc do you take? Sending you best wishes and looking forward to hearing how it's going for you. x

[KateBush]

Hi Susie I don’t know anything about the other meds as I scraped it in to palbo and letrozole, 2 weeks on 2 weeks off but I do know that the oncologists don’t tell you all the options at once cos things keep changing . However, I would like to say that you are defo in my prayers and hope our words are giving you strength to keep positive. With love

[SusieIM in reply to KateBush]

Yes very true the oncologists don't tell us the options all at once, because it depends on how we are doing. I love the support here, thank you for your prayers and I'll keep on praying for you too and all of us

[mariootsi]

I will be praying for your success on your new treatment!

[hdhonda]

I am on Ibrance/Letrozole and it is still working, but asked oncologist at Moffitt Cancer Center where we would go next and he said Faslodex/Piqray or could try just Faslodex alone. I want to stay on Ibrance as long as possible. He is excited about Piqray. Best wishes on whatever you decide. Blessings, Hannah

[SusieIM in reply to hdhonda]

Blessings to you too Hannah

[Hidden]

Don’t give up hope. There are new trials all the time.

[SusieIM in reply to Hidden]

Thank you!

[SusieIM]

thank you!

[RLN-overcomer]

Greetings: Sister/warrior, and yeessssss over-comer. I do pray the God we serve will find the right combination of medication that will show no progression, or NED Amen XoXoXo

[SusieIM in reply to RLN-overcomer]

Amen