ValinMtl –Val, how are you goin!

Jan,

Val posted yesterday under the post about Sharyn that she has been taken off of the ipi trial. I think this has just happened. I hope she sees your message and gives more information.

Jan,

Val posted yesterday under the post about Sharyn that she has been taken off of the ipi trial. I think this has just happened. I hope she sees your message and gives more information.

Hi Jan and Annette,

I'm back home after two back-back-stays at the hospital.  The first one was a result of an infected sub-q.  The scab came off and infection set it.  I was given antibiotics with sulfa which we now discover I am allergic to.  I had a 5-day visit that time…at first, they thought it might be the impilimumab treatment (as in your immune system breaking down) but after two days it was realized that the high fever/chills/and then red lobster look on my body was due to the reaction.  So I withstood that one…although I missed my 3rd ipilimumab treatment.

Several days later, up at the cottage…a severe pain in left groin area…I have a growth in lymph node there.  By the time, we got home, I wasn't walking except hunched over and had high fever…triage (nurse who decides where we rank to meet doctors) didn't even send me back out to register, she did it…I was on table being seen by doctor when my husband arrived from parking car.  NOW this one became a problem…I was put on morphine to kill the terrible pain which kept getting worse.

They sent me for a CT scan and lymph node had grown from 2.6 x 3 cm (November)  to 8.2 x6,7 cm (now)….it had increased in February but not whatsoever to this degree..but not as significantly as now).  Plus, it showed a mass on the left breast!!!

My surgeon Dr. Merguerditchian whom I hadn't seen in over a year since I was on clinical trials was there for me.  He saw me 4 times during my 8-day stay in addition to all the other doctors in various areas, I was treated very well.  The morphine was helping but I was still in pain.  He ordered antibiotics, and ordered a brain scan/colonoscopy/and ultrasound to re-check breast mass. WELL the good news, I am still clear in all those areas..CT scan was incorrect about breast mass. The antibiotics have helped the pain area (left groin) immensely.

When I was first there, I had been told it would be my oncologist making decisions, he 'dropped' by on the 7th day! to tell me I was off the trial and offer one at the Jewish that injects into sub-qs…but  I recall dear Sharyn did something similar, it looked like it was working on the sub-qs but she then had brain/breast mets so I nixed that suggestion.  I am looking into two other options and if I am accepted I will advise as soon as possible. I had planned to take the 50%/50% IL 21 or dicarbazine that was available in Montreal first..hoping to get on the IL 21…but apparently the guidelines were that I had to be chemo naive and yet ipilimumab required that I had to have taken another stage IV drug firs , I took temodar.  Had I been aware, I would have gone with the IL/Dicarbazine first and then landed in ipilimumab but I didn't read the guidelines….let that be a lesson to me when I have two options again!!!!

In the meantime, they sent me home with morphine pills for morning and night plus some for every 4 hours in between if it hurts…so far I have taken only two others…been home since Thursday night but very tired and had to collect my thoughts before writing especially after reading some of the recent posts. 

So would I do ipilimumab again?  In a heartbeat, the first round September to November stopped the 100s of cutaneous growths on my leg which was purple from necrosis. Unfortunately the beast doesn't want to let go and has re-attacked in the form of a growth in left groin and sub-qs (huge in size…3 big ones and others are popping up)….time to get my strength up and try another treatment as soon as possible.

Wednesday, I have a consultation for  'palliative' radiation for the left groin…how I have always feared the word 'palliative'…it makes it sound like the beginning of the end, I pray not.

Val  xxx

Hi Jan and Annette,

I'm back home after two back-back-stays at the hospital.  The first one was a result of an infected sub-q.  The scab came off and infection set it.  I was given antibiotics with sulfa which we now discover I am allergic to.  I had a 5-day visit that time…at first, they thought it might be the impilimumab treatment (as in your immune system breaking down) but after two days it was realized that the high fever/chills/and then red lobster look on my body was due to the reaction.  So I withstood that one…although I missed my 3rd ipilimumab treatment.

Several days later, up at the cottage…a severe pain in left groin area…I have a growth in lymph node there.  By the time, we got home, I wasn't walking except hunched over and had high fever…triage (nurse who decides where we rank to meet doctors) didn't even send me back out to register, she did it…I was on table being seen by doctor when my husband arrived from parking car.  NOW this one became a problem…I was put on morphine to kill the terrible pain which kept getting worse.

They sent me for a CT scan and lymph node had grown from 2.6 x 3 cm (November)  to 8.2 x6,7 cm (now)….it had increased in February but not whatsoever to this degree..but not as significantly as now).  Plus, it showed a mass on the left breast!!!

My surgeon Dr. Merguerditchian whom I hadn't seen in over a year since I was on clinical trials was there for me.  He saw me 4 times during my 8-day stay in addition to all the other doctors in various areas, I was treated very well.  The morphine was helping but I was still in pain.  He ordered antibiotics, and ordered a brain scan/colonoscopy/and ultrasound to re-check breast mass. WELL the good news, I am still clear in all those areas..CT scan was incorrect about breast mass. The antibiotics have helped the pain area (left groin) immensely.

When I was first there, I had been told it would be my oncologist making decisions, he 'dropped' by on the 7th day! to tell me I was off the trial and offer one at the Jewish that injects into sub-qs…but  I recall dear Sharyn did something similar, it looked like it was working on the sub-qs but she then had brain/breast mets so I nixed that suggestion.  I am looking into two other options and if I am accepted I will advise as soon as possible. I had planned to take the 50%/50% IL 21 or dicarbazine that was available in Montreal first..hoping to get on the IL 21…but apparently the guidelines were that I had to be chemo naive and yet ipilimumab required that I had to have taken another stage IV drug firs , I took temodar.  Had I been aware, I would have gone with the IL/Dicarbazine first and then landed in ipilimumab but I didn't read the guidelines….let that be a lesson to me when I have two options again!!!!

In the meantime, they sent me home with morphine pills for morning and night plus some for every 4 hours in between if it hurts…so far I have taken only two others…been home since Thursday night but very tired and had to collect my thoughts before writing especially after reading some of the recent posts. 

So would I do ipilimumab again?  In a heartbeat, the first round September to November stopped the 100s of cutaneous growths on my leg which was purple from necrosis. Unfortunately the beast doesn't want to let go and has re-attacked in the form of a growth in left groin and sub-qs (huge in size…3 big ones and others are popping up)….time to get my strength up and try another treatment as soon as possible.

Wednesday, I have a consultation for  'palliative' radiation for the left groin…how I have always feared the word 'palliative'…it makes it sound like the beginning of the end, I pray not.

Val  xxx