Immunotherapy

[Juliandrea]

Does anyone know if immunotherapy works or has been tried for MBC?

[Josalo]

Yes

Read this one

newscientist.com/article/21...

[kduck in reply to Josalo]

Thank for this article, God bless you!

[Juliandrea in reply to Josalo]

Thank you so much!!! Wow!!

[Hidden]

I read about Judy Perkins, a lady in America who had stage 4 breast cancer, and her disease was cured using immunotherapy.

[Juliandrea in reply to Hidden]

Amazing. I read the article. Such a great story. Thank you

[Hidden in reply to Juliandrea]

You're welcome!

[blms in reply to Hidden]

Thanks for the post. I am right next door to NIH and I knew they were working on this thru some friends working there but did not hear this, which is encouraging. I wish it were an option BEFORE we get to the point if no return. At the Philadelphia conference, scientists said that these immunotherapies will be on the market for us in a couple of years. So hang in there sisters! And keep laughing- it produces immune cells! Your body doesn’t know if the laughter is fake or real.

[Hidden in reply to blms]

I am always laughing, even joking about "the disease" as I call it! It does help lighten the mood and I feel very well physically and emotionally.

[blms in reply to Hidden]

Good for you!! We all need to remember this each day! Not so easy to do. I like “THE disease “ label! Think I will try that certain there will be a smoke I can attach to it. Even watching others’ response should be comical. Then you can thank the stranger whom you just told that you had”THE disease” and walk away with a laugh or smile. I like it!!

Each time I say I have MBC, or stage 4 cancer, which more can comprehend , I find I get teary eyed. I don’t want to feel that any longer. I have found for over 20 years that the more I have said to others that I have cancer, the less scary or important it seemed. So it was very effective but I need a change and will try this! Thanks

[Hidden in reply to blms]

Thank you! I think it helps me to detach from it by referring to it as such and not making it part of my identity, because that is not my identity. I just happen to have a chronic illness that I will be living with for the rest of my life. But Sophie the person is someone completely different. I also joke about the "perks of having cancer" or "how I had to get cancer to get free complementary therapies" and that sort of thing! I don't think some people are expecting that kind of response, but I don't want it to be all doom and gloom, because it isn't. I am 39 years old, and plan on living for many more years. I also find it encouraging whenever I see my oncologist. She always mentions that I am doing "remarkably well" and that is such a boost.

I sometimes get teary-eyed too. I used to a lot when I was diagnosed back in March. Then as more and more people found out they all wanted to know the details, what treatments I was having, why I hadn't lost my hair (I'm having hormone therapy rather than chemotherapy) and so on. It was exhausting. In the end, I had to just say to people that unless I initiated the conversation to not bring it up. Or to text me, rather than call or talk to me face-to-face because I didn't want to cry in front of friends and family. I still don't.

It is so encouraging to hear that you have lived with this disease for 20 years. That's my goal too. So far, it's just been 6 months since my diagnosis, and however long I had the disease before then. But I also plan to stick around for many more years.

Take care,

Sophie x

[blms in reply to Hidden]

I am sorry that you are stuck with this so early in life. I was 48 and gad 4 children 2 years old and up. So they gave me purpose. So that part of cancer was not the worst thing that ever happened to me - bilateral tram, chemo, radiation etc- you got the picture, 20 years of remission and new world of medicine to take. Challenges are given to us to learn to overcome. Always something we need to learn. but more importantly, this time I realized I gave other things to learn and it had been positive and exciting to be on that track.

Don’t believe that you will have this forever people go into remission every day. Zero reason it can’t be you!

[Hidden in reply to blms]

You have certainly gone through a lot! Your example is very encouraging to me.

Before I started treatment, I was given the option of chemotherapy or hormone therapy. I hadn't even heard of hormone therapy to treat cancer before I was diagnosed, so I thought my only option would be chemotherapy. I was geared up to start chemotherapy, had gathered together some hats and scarves and practised tying the scarves. But here I am with a full head of hair after I had come to terms with the fact that I would lose it. It felt like I had to mourn the loss of my hair and then mourn the fact that I would not be losing it (if that makes any sense!)

I really hope I go into remission. If my oncologist tells me that I think I will break down and cry or hug her! I have just started reading one of Kris Carr's books (Crazy Sexy Diet), and am seeing a dietitian next Friday to see how I can improve my diet and health.

Thanks so much for the encouragement! Have a good weekend,

Sophie x

[blms in reply to Hidden]

Lots of great books and things online! Do go on a stricter diet, mainly greens and cabbage type foods and fermented foods. No sugar or any wheat flour of any sort. A gallon of water daily while on Ibrance.

Pick up radical remission book and Suzanne summers book. Both great

[blms in reply to blms]

Where do you live

[Hidden in reply to blms]

Thank you! I have already made some drastic changes to my diet. I have always eaten a healthy diet, but chocolate and cakes have always been my weakness. I have cut those out, although I may still have some occasionally. I drink 3 litres of water each day and I continue to eat a truck load of fruit and vegetables each day. Thanks for recommending Suzanne Summers' book. I'll have to order that. I live in the UK, but lived in America for 7 years, as my husband is American.

Sophie x

[blms in reply to Hidden]

Her book is called knockout. I enjoyed it more than I thought I would and highlighted a lot. So keep own handy. I am finishing radical remission by turner now and that also has a lot of great info. Also I would suggest looking up joe Dispenza there are great things online from

Him as well as a few books that I have on my self to read next. Look up on YouTube brad Yates and tapping

[Hidden in reply to blms]

Thank you so much! I need to go grab my notebook and write this all down! x

[Kimr2081 in reply to Hidden]

I also am hooked on Kris Carr and ordered two of her books. Check out her interview with Chris Wark on you tube. He is very inspirational also. He has stage 3c colon cancer at 26 and chose not to do chemo and he is thriving and cancer free going on 12 years.

[Hidden in reply to Kimr2081]

Hi Kim,

If it's the interview I am thinking of, then I have seen it. I remember thinking at the time that it was just Kris Carr who had cancer, not him! That's brilliant that Chris chose to forego chemotherapy and is doing well. So does having stage 3c colon cancer mean it can be cured? My sister-in-law has colon cancer, but I don't know what stage it is.

I have at times wondered whether I should have chosen chemotherapy rather than hormone therapy (I was given the choice back in May). But I am managing very well with my treatment. I know that if I had started chemotherapy I would probably need to take time off work, I would be dealing with the hair loss and nausea and a lot more besides. My mum had chemotherapy and it sapped her energy so much. I also have friends who have gone through chemotherapy and they have been left with some dreadful side effects years down the line. One now has a heart condition that she didn't have before.

I do wonder how our bodies can be pumped full of poisonous substances, which is basically what chemotherapy drugs are, but still be expected to fight disease. I remember my oncologist saying that hormone therapy is "less toxic than chemotherapy" but she still conceded that it is toxic. After my body adjusted, I was fine. I get minor aches and pains, but it is nowhere near as bad as the debilitating pain and weakness I felt at first when I struggled to get dressed, put my shoes on or even pick up my cat.

Take care,

Sophie x

[blms in reply to Hidden]

I’m

Assuming your breast ca is highly estrogen positive and you are taking letrizole. Is that correct? You could have years on that if you are lucky.

Your mom probably had A/C and the adreomiacin (not spelled correctly) does absolutely give you some heart damage. That is why the check before to see if you can sustain the damage. Crazy crap! Letrizole is a great drug snd aside from hit flashes at your age, it’s not so bad!! It doesn’t bother me this time around as I am so much older than when I took years ago

[Hidden in reply to blms]

Yes, that's correct. I am taking Letrozole. I had one hot flush in June and a couple of night sweats after that, but other than that I have not been bothered with hot flushes. My oncologist was really surprised when I told her that!

My mum didn't have breast cancer. Hers was Non-Hodgkin's Lymphoma. It's my friend who had breast cancer who ended up with a heart condition. x

[youngfarm in reply to blms]

Apparently the cost of immunotherapy, $500,000, will determine that 40 yr olds could be accepted, but seniors would not be considered.

[Hidden in reply to youngfarm]

Wow! That's a lot of money. As far as I know, immunotherapy is not available over here in the UK on the NHS. I'll have to check to see if it's offered privately.