I have just finished my chemo and had a mastectomy for Stage 2 Grade 3 IDC HER + Breast Cancer. I'll soon be involved with this trial for PALLAS. I wonder is there anyone else out there involved.
I hope you get to hear from other members who are involved in the PALLAS trial soon but in the meantime I just wanted to make you aware of Breast Cancer Care. I'm not sure if you have come across their website already but if you haven't they have an online forum for people diagnosed with breast cancer so if you join and post there as well you may increase your chances of finding others who are taking part in this trial.
Good luck Siuin. I hope the trial goes well and if you get a chance come back and let us know how you are getting on.
I'm not sure whether to recommend it or not because I do not know what the long term benefits are. However what I can tell you is my experience of it. I hope that will help you decide.
I was never told exactly what stage I was at but it was definitely stage 11 going on to stage 3. It was also grade 3 with some node involvement. It was estrogen positive and everything else negative. It grew quite quickly. I found a hazelnut sized lump on my right breast while in the shower at the the end of April and by the time I was diagnosed and began chemo in late July I could see it protruding through my skin.
As I have enjoyed perfect health up until this point and neither smoke not drink, I pretty much flew through the chemo with minimal side effects. I had five rounds intended to shrink the tumour. By round 1 the nodes were beck to normal and by round 4 the tumour was gone.
However a mamogram a month after my chemo ended showed that while the cancer was gone calcium depositis remained and they had the potential to flare into cancer so the decision was made to remove my breast. A biopsy afterwards revealed pre cancerous tissue which chemo cannot kill. At the same time as the mastectomy, I had an implant inserted. THat was DEcember 2016.
In late March 2017 I began the Pallas trial. I was given 3 weeks dosage. The idea was that you would take one a day for three weeks and then take one week off. You would have a blood test then to see if your neutraphils had recovered. If they werte over ten, then you would begin your second round.
At my first test, I hadnt reached the 10 so I had to come back the next day. I reached the 10 every other time.
In late May ,my right reconstructed breast went pink and then harder. It then felt bigger. On June 1st 2017 I had it checked and it had swollen with liquid. AS I had intended to get my left healthy breast reduced to match my implant (I was an F so I used this as a chance to become a C), my surgeon said she would change my implant on the same day as the reduction.
I had my double operation in early July. When you are about to have an operation, you have to stop taking the Pallbocciclib for , I think a week before. I duly did. I had my operation on the Monday but was in hospital for a week because I contracted an infection. I was home arounf July 15th 2017 and started on the Pallbocciclib under medical supervision. I should say that I was really well looked after be everyone involved. It might sound different, but thats poor narration by me. The nurses, doctors etc were all really really good.
Then came July 23 2017. It was the last day of round five of my Pallbocciclib. I woke up feeling about 6am absolutely terrible and my right breast was sore. I thought that the breast might be filling again. At 11am I got to the Doctor and was told to go to hospital immediately. I did. I had sepsis. I was in extreme discomfort, vomiting, unable to sleep, eat or drink and on extremely strong antibiotics until Friday morning when the decision was made to remove my implant. After that I stayed on antibiotics and slowly recovered, I went home the following Wednesday.
About another week later I met the Pallas team and they had reviewed my file and decided to take me off the Pallas trial. THey had concluded that the drug was most likely a contributory factor at least or the reason why I had been so ill. As the trial is new, I think they concluded from my experience, don't operate on people who are taking the drug.
The surgeon decided to give my body 6 months before reconstructing my breast. This time they are goinf with a latimuss dorsi flap. It seems to be less prone to infection.
When I started chemo I got my first hemorrhoid. I had to deal with them on and off during the chemo. THey came back during the Pallas trial. Since I was taken off the trial, I have had no more hemorrhoids.
Having said all that, I'm glad I did it. Whatever good it offers, at least I had five rounds of it. I feel absolutely fine now and my life is back to normal. It was a bit of a time commitment that interfered with my job and it is nice not giving blood all the time. I would definitely have stuck it out if it wasnt for the septicaemia.
