I feel so truly blessed and so happy to write that we got the drug in Rochester. Prayers have been answered.
It wasnt easy and we didnt have an answer on Thursday. We were booked in for an appointment for Friday at 2pm to get the drug in case the answer came back yes.
Konrad was a superhero on this trip. He managed to keep a 4-year old smiling and entertained despite the boring nature of the trip (two days spent in a cancer center after a 3 hour car ride). All the while wheeling me along in a wheelchair, and taking care of me as I was on my last drop of energy the entire time. Just feeling miserable. My fever reached 41 C, highest it has ever been, during this trip.
We stayed the night in Rochester, were called back first thing in the morning by the center because some bloodwork had to be repeated -and the company was waiting for this to make some decisions. Then more waiting.. the doctor was still in talks with the company half hour before the scheduled time of treatment. We were still in limbo, still didnt know what the answer would be. Then we got the news we were hoping for, and tears of joy.. I got my first infusion of Brentuximab Vedotin (SGN-35).
And now we humbly wait and see and hope for improvement.
Sending all our love to you this Easter.
Paulina, Konrad and Karolek
Sunday, April 24, 2011
Thursday, April 21, 2011
Today at 3 pm
There has really been no good news to share and that is why no posts have come until now. No time to write in detail, but I have stopped taking Crizotinib and since Monday I have needed to have 3 transfusions, for low hemoglobin and platelets. My energy level is extremely low, stairs are again a challenge, I have shortness of breath.. and of course the fevers continue.
We venture off this morning to Rochester, NY, where there is a trial center that may be willing to grant me the SGN-35 drug on compassionate grounds. Key word is 'may'.
Please cross your fingers, pray, send positive vibes our way, today Thursday at 3 pm. At this time I will be meeting with a trial doctor there who will assess me and hopefully have mercy..
With an open mind and more optimism than we've all had in weeks, I sign off,
Paulina
We venture off this morning to Rochester, NY, where there is a trial center that may be willing to grant me the SGN-35 drug on compassionate grounds. Key word is 'may'.
Please cross your fingers, pray, send positive vibes our way, today Thursday at 3 pm. At this time I will be meeting with a trial doctor there who will assess me and hopefully have mercy..
With an open mind and more optimism than we've all had in weeks, I sign off,
Paulina
Wednesday, April 6, 2011
Waiting game
Since returning from Chicago (and I attach my two favorite pictures from the trip; from when we visited Rainforest Cafe), things have been a bit crazy.
Karolek is down with a stomach flu since last Friday :( Poor little guy has tummy pain, cant keep food down and even fluids is a challenge (but we're forcing him to drink lots so he stays well hydrated). Vomiting and diarrhea.. And he's unfortunately joined me with the fevers - so now its two of us to track with the anti-fever meds. But we're so proud of him, knock on wood, but he hasnt been sick in as long as we can remember, and this little guy is a TROOPER! So brave. Doctor said it just needs time to pass, so all we can do is wait. I hope he feels better very soon.
On the other hand, my last visit with the oncologist also has us sitting on the fence this week, waiting. Well, I'm still taking the increased dose of Crizotinib as well as the prednisone (75-100 mg daily now!, third week); but we're waiting for information -- to decide what to do next.
Basically the drug navigator at the hospital is going to look into the other two drugs that the doctor in Chicago recommended, for efficacy in my particular lymphoma. Off the top of his head though, my doctor didnt seem to think they were particularly effective in anaplastic large cell lymphoma (ALCL) :( But at least this is being looked into.
My doctor is also looking into the possibility of getting the SGN-35 drug here in Canada. (http://www.fiercebiotech.com/special-reports/10-promising-late-stage-cancer-drugs/sgn-35-10-promising-late-stage-cancer-drugs).
I will update more after my next clinic visit on Friday. Going to take prednisone, temperature coming up already and its only been 8 hours since the last dose.. Dont want to let it get up to 40.1 C (as it did yesterday, and wiped me out for a good portion of the day)..
Remaining hopeful.
P
Karolek is down with a stomach flu since last Friday :( Poor little guy has tummy pain, cant keep food down and even fluids is a challenge (but we're forcing him to drink lots so he stays well hydrated). Vomiting and diarrhea.. And he's unfortunately joined me with the fevers - so now its two of us to track with the anti-fever meds. But we're so proud of him, knock on wood, but he hasnt been sick in as long as we can remember, and this little guy is a TROOPER! So brave. Doctor said it just needs time to pass, so all we can do is wait. I hope he feels better very soon.
On the other hand, my last visit with the oncologist also has us sitting on the fence this week, waiting. Well, I'm still taking the increased dose of Crizotinib as well as the prednisone (75-100 mg daily now!, third week); but we're waiting for information -- to decide what to do next.
Basically the drug navigator at the hospital is going to look into the other two drugs that the doctor in Chicago recommended, for efficacy in my particular lymphoma. Off the top of his head though, my doctor didnt seem to think they were particularly effective in anaplastic large cell lymphoma (ALCL) :( But at least this is being looked into.
My doctor is also looking into the possibility of getting the SGN-35 drug here in Canada. (http://www.fiercebiotech.com/special-reports/10-promising-late-stage-cancer-drugs/sgn-35-10-promising-late-stage-cancer-drugs).
I will update more after my next clinic visit on Friday. Going to take prednisone, temperature coming up already and its only been 8 hours since the last dose.. Dont want to let it get up to 40.1 C (as it did yesterday, and wiped me out for a good portion of the day)..
Remaining hopeful.
P
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