Be Positive

Hi Stella why are you not eligible for immunotherapy?  Is it because of the type of bowel cancer?

Yes it is the genetic profile of the cancer cells. It was very confusing at the start. As my oncologist at Cambridge think not, then the Professor at Royal Marsden think I could have it. Finally I went to an oncologist at UCLH and paid £3600 for a US based most comprehensive genetic test. It shows I am not the right candidate for it. A lot of time was wasted and emotionally very draining. 

Stella is it the same with all cancers?  I dont know how you find out these things.  All as I know is that if have metastatic lobular breast  cancer with bone mets.  How do I find out if I am eligible for certain treatments.  To be honest my oncologist I have only seen once and his under studies or I dont know what you call them twice.  They give me hardly any information at all.  I wouldnt know what to ask them.   I sound really stupid here.  

Lee 2 x

Lee 2 don’t ever think you sound stupid. I am a dentist so it is much easier for me to understand the medical jargons. It is very hard for anyone that is not medically trained to navigate oncology. Oncologists have minimal 20 years of training to become one.

Breast cancer is super complex and treatment depends on your specific type. The best place to ask maybe the breast cancer forum? A lot of people can be very knowledgeable and spend most of their research on breast cancer treatments. MacMillan / cancer research UK may also have some general information on different types etc. 

I always find US has very detailed explanations 

https://www.cancer.org/cancer/types/breast-cancer/about/types-of-breast-cancer.html 

You could also contact your CNS and ask her to explain your type a bit more? Mind you I found the nurse is very nice but not very scientific on her explanation. 

Hi Lee 2, I agree 100% with Stella on the complexities of cancer, I was in healthcare 15 years, over 5 in cancer/palliative care and and it's a minefield  understanding the best treatment for each individual, taking into account every other factor unique to that person, how treatment A is likely to work, and how it could affect follow on treatment, all this while new treatments are becoming or may soon be available, which may or may not benefit you. You also have oncologists who like the familiar and are comfortable with what they already know and may not be as open to new treatments, so remember you can see another oncologist.

I don't watch TV, but love studying, and have been researching immunotherapy, for 18 months, amongst other things, as my cancer doesn't respond to it, and have found  after searching the world, my local University has a very promising treatment in the pipeline, they just need to finalise editing the carrier virus safely, PS, it's a really nasty virus, for trials to begin, and as I have "advised"?, the Uni on a small project, they kindly took my name for when/if trials become available.

Back to your/our understanding of treatments, we barely scratch the surface so rely on our teams to do the best for us, though in these rapidly expanding time of new treatments, therapies and understanding of specific cancers, I doubt any team can keep up-to-date.

Eddie xx 

Hi Eddie and Stella,  Thank you for not making me feel stupid.  I am on Ribociclib, Exemastane and Denosumab.  Are these immunotherapy drugs.  I have read the leaflets and they say targeted therapy.  I am only seeing oncologist again on 27 May.  Thank you.

Lee 2 x

Targeted therapy generally is not the same as immunotherapy. Have you got an email for your CNS? I would just ash them about it. 

Immunotherapy can work wonders in the right patients, but completely useless if the genetic profile is wrong. 

Hi Lee 2, we are not experts, and my studies relate only to malignant germ cell tumour ovarian cancer, "my kids mums cancer," but Ribociclib is a targeted therapy- a protein blocker, Denosumab, is also a targeted therapy, for bone strengthening, and may be an option for me too, and Exemastane is a hormone therapy used to restrict aromatase production, so estrogen levels fall, some ovarian cancers are estrogen receptor positive. So to answer your question my friend, your not on immunotherapy, and I agree 100% with Stella, if your not suitable, they won't work, but Genomic testing is free on the NHS, if referred by a specialist. 

Eddie xx 

Hi Stella and Eddie,  thank you for your reply.  Have you had the Genomic testing Eddie and is that to see if you are suitable for immunotherapy?  Is that what you paid privately for Stella.  Hope everyone has a lovely Good Friday x

Hi Lee2 I haven't been on here for a while. But reading your earlier post I have to tell you I am cancer free now. After 4 1/2 years of immunotherapy. I been on a 3 month break from treatment, had a scan in March and a meeting with my oncologist 2 weeks later and my husband and I and the oncologist decided to stop treatment, I've been clear for 7 months and immunotherapy has done its job. If it comes back I'll have targeted therapy. That has been agreed from there group meetings. So it can happen , how often I don't know and for how long ?? My immune system is shot andI pick anything up at the moment. Would I do it again YES. Take care,  your body follow your feelings. XX

MOI2