I have bone meets and it seems that now my liver might be affected
My onco is suggesting Piqray and the side effects are frightening
I think that it will impact my life such that I will be unable to work and function
Anyone on Piqray
I am also exploring Iscador mistletoe,,, not si available here but apparently good to boost immune system
Any comments would be appreciated
We don’t have pikray treatment in the U.K. as far as I know but I’ve been having mistletoe treatment since last November equavel. I started with a two week ‘intensive’ course, injections and infusions together that made me have a flu like fever 3 times in the two weeks. Now I’m on a regular regime of monthly infusions and twice weekly injections I give myself.
I have no idea if it’s working - I don’t know what I would be like without. But the trials done so far show pretty reliably that it improves quality of life and reduces side effects, although the jury is out on whether it improves outcomes (ie effects the cancer at all). But my oncologist is happy for me to do it, and he generally hates anything ‘alternative’.
Best wishes
Rusty
Thanks for your reply
My onco is not keen on Iscador but I am not keen on Piqray
I am exploring a clinic in Switzerland that has been using mistletoe for years
In Montreal and area it seems that it is difficult to get and only in naturopathic clinics ... I am not keen on naturopathy...
John Hopkins USA has done some inconclusive studies but it seems they are continuing to explore
Who knows??
I have just learned that I might have liver mets
Yes my Mistletoe doctor is from Germany and I believe it’s pretty common in both Germany and Switzerland, they can even give it in hospitals and cancer centres there. I go to an alternative therapies clinic for the monthly infusions, although I did go to the Aberdeen centre for the intensive course which is a normal gp surgery (but a private treatment).
My nearest centre is Stroud, a whole day trip to drive there and back and have the infusion. I do wish it was more widely available.
X
Rusty
Hi Rusty,
I spoke to my oncologist about piqray when I saw her recently, as I will qualify for that as a second line treatment (along with faslodex) if and when the time comes to move on from my first line treatment. She said that it should be available in the UK on the NHS by May 2021. I'm not sure if we can get it privately over here yet. It was approved by the FDA in America in May 2019. I remember hearing about it at the time. But at least it is in the pipeline!
Sophie
Thank you Sophie, I had been trying to find that out! Presumably it depends on what particular mutations you have. Do you know if you have to have a separate test?
Rusty
You're welcome, Rusty. I had genomic testing done in January and I found out I have the PIK3CA mutation, which piqray targets. But my oncologist said that as I am responding so well to my first line treatment I can continue with this as long as it is working. I had it done on the NHS, so there's no need to go private to get it done. I had an ultrasound, followed by a biopsy and a blood test right before I left the hospital. I asked to see the tumour after the biopsy, as I wanted to see what my "enemy" looked like. I'm a bit odd like that! When my husband had a lipoma removed from the back of his head a while ago (we suspected it might be cancerous, but it wasn't) I asked to be allowed into the operating room so I could watch the surgery. I inspected the mass afterwards and felt reassured when I touched it and found that it was not hard like a tumour, but soft and squidgy like a piece of fat.
Sophie
Hi Equavel, I’m so sorry that you’re experiencing progression. I can understand your hesitation with Piqray. The list of side effects can be frightening, especially the rise in glucose levels, which seems to be the common one for patients on the drug. I am not on the drug, but I am on some support group forums on Facebook for metastatic breast cancer, and many women on those forums are taking Piqray. Though they all talk about the glucose levels and the fact that they can no longer eat carbs or sugar while on the drug, many have had great results as far as their cancer goes. It can’t hurt to try it, and keep in mind that everyone reacts differently to drugs. I hope your oncologist listens to your concerns, and together you can find a treatment plan that works for you. X
I just looked up that drug (I have not ever taken it). It is usually in conjunction with falsodex injections also. But from the side effects, it is basically seems to have the same exact side effects that most of us on various drugs (I was on Ibrance, now on Verzenio) have also. I do not see any different side effects than the ones we are told when on other drugs for mbc.
That being said, what I did learn from this board (the best thing actually) is that everyone has completely different reactions and experience different side effects. I had to get off the Ibrance bc on my week off, I was so so sick I could not get out of bed. (This was at the beginning and I had no idea, until I joined this forum board, that my onco could have tried a lower dose but she took me off it and put me on Verzenio.)
But then I found that many women felt better on their week off! Some women were like me, and felt sick as a dog, and yet it seemed the largest group of women felt the same on their week off of Ibrance as they did while on it. I was astonished and the best lesson I learned is not to go by how others feel on a certain drug.
Here's hoping you give it a try and hopefully you will be one of those women who don't suffer the same side effects that are mentioned with taking this drug. But most of these drugs we are going to have some side effects.
Best to you and you can't think that it will affect your life so drastically without even trying it first. Verzenio had a bad rap also but I have managed to learn how to deal with the diarrhea issues. I did have to take the lowest dose but I feel so much better on this than I did the Ibrance. I have much less fatigue and on this drug, I take it twice a day with NO break so I no longer get upset or depressed like I did with the Ibrance when my week off was coming up.
From the available literature, it seems Ibrance has more frightening possible side effects than Piqray . We've been in Ibrance and it basically killed our blood counts, couldn't tolerate the toxicity. Wish you the best in your ongoing treatment.
Hi,
Has your oncologist said that the side effects from piqray would be quite hard to handle? Sometimes we can scare ourselves if we research too much and end up worrying that we may end up experiencing certain side effects. But I have found that we do not all respond in the same way. I would ask some more questions about piqray and see if you are happy to go ahead with it before deciding what to do next.
All the best,
Sophie
I started on Iscador last month, the week after I had my first Abraxane infusion for liver mets. I am working with an osteopath who has decades of experience with it. I am just doing the self-injections twice a week, or less if I'm having chemo. I didn't have a reaction with the first three 1mg vials but had a strong local reaction when I bumped up to 5mg. Both the osteopath and my ND seemed impressed that my immune system was so responsive at that dosage...which of course made me happy. This week I backed off to 2.5mg and still got a local reaction so I'll stay at that dosage. Both doctors have told me that fevers are very unlikely with the injections.
For those interested in more information, here is a general article, with a link to the National Cancer Institute page about it.
healthline.com/health/mistl...
The article is incorrect in stating that Iscador is not available in the U.S. Many ND oncologists can prescribe it and, with a doctor's prescription, you can order it from Uriel Pharmacy in Wisconsin.
I wish I had started it earlier in my treatment when I was just on Letrozole. But then again I think it's helping with chemo side effects now, especially fatigue.
I also have the gene that Piqray targets but was worried about the side effects. Have you been offered any other options? From my own experience I think it's important to take liver mets seriously, as they can grow surprisingly quickly.
Wishing you all the best!
Patty
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