VinceMart

Jeremy,

i am writing on behalf of my husband who is sleeping in the bed in Hospice care.  He has Mets to his spine, brain, bones, and liver.  We are here now not only due to the seizures he is having but also due to issues from all the oral pain meds he has had to take in addition to steroids and other pills. We were never offered a pain pump, but i believe we would have done it given the option.  His pain not being under control has caused us to miss much precious time together.  He is only 47 and had a lot planned.  I noticed your other posts and did not reply, however I would say hope and pray for the best but always stay ahead of the pain anyway you can.  Enjoy every second with your precious family.  None of us knows when our time will come, but we can make the best of the time we do have.

Wishing you a long lifetime of health and happiness 

Erica(wife of Vince)

Great news Mike, wishing you a healthy 2019!

Hi Erica,  I too am stage 4 with mets in my liver,spine and arm.  I recently started ip I nivo and after 1 at dose my ld h went from 300 to 1000 and by week 3 up to 1400.  My spine now has tumors through top to bottom.  My cancer is very aggressive and my doc said yesterday she was very worried but have me dose 2 of the combo and referred me to spinal.radiation which I have appointments tom tomorrow.  We were not surprised because I had been in pain and my visible tumor was growing like crazy.  They did say i could try to get some response from braf me k but can't do that until.after radiation.  We too are freaking out a bit but hoping my immunotherapy will kick in.  I would definitely ask about radiation and bra f me k .   Wishing you both the best and some answers soon. 

Vince

Hi Amanda, 

I had my second dose of ip I Nick yesterday.  My ldh went to 1000 last week and now 1400 yesterday.  I have been on steroids since first treatment.  I had an MRI of my spine on Monday which showed significant progression of disease in my spine( which explains my excruciating back pain), but Dr still thinks ipi nivo  second dose was important so we did it.  I see radiation oncologist and palliative care tomorrow.  I would think a short break with some steroids and maybe you can get dose 2,  my doc thinks 2 doses are enough.  Good luck and keep trying.

Vince

Hoping things get rolling soon for you.  Vince

Made me laugh, thanks for posting!

Vince

I just had SRS in early December for 1 brain met (3mm) on my cerebellum.  It was quick and easy with no side effects.  Wishing you all the best.

Vince

Hi Erica,  I had appt with palliative care to get my pain under control and radiation oncology yesterday.  Plan is 10 rounds of radiation on spine since it is everywhere.  Then I will see if I will get round 3 of ipi nivo or go on braf again. No decision made on that yet.  Radiation starts Jan 6 , hope you are getting a plan also.  I'll let you know how radiation goes. Best wishes and I'm keeping positive vibes going for you both.

Vince

Early March, so it is quite a way off

Thanks, I have been on steroids and am starting acupuncture tomorrow and meeting with pallative care after Christmas.  I so just want to be able to give the Ipi/Nivo a shot, so I need to get through this pain to get to infusion #2 the day after Christmas.  I have followed your posts and wish your husband all the best.  I know it has been a rough time, but am keeping you both in my thoughts and prayers.

Vince

Caitlin,  I did Braftovi/Mektovi for about 6 months and had to wash out for 1 week before starting Ipi/Nivo.  My Dr. said cannot give me all 4 although I wish they could.  Good luck and I will keep you in my thoughts.

Vince

Mat,

How are you doing? I have been thinking about you?

Vince