THHURSDAY, NOVEMBER 7th, 2019

Chris has been doing really well, overall, since being home.  He is working on getting his strength back by walking and doing the stairs several times during the day.  He has also been helping more with Stellan (who is quite a bit to handle these days).

Chris has still had some difficulties adjusting to being home, which is to be expected after being in the hospital for so long; one of those difficulties has been trying to taper his pain meds safely and effectively so he has minimal side effects from withdrawals now that he no longer needs the meds. This process has gone pretty well, overall, but he has still been experiencing some minor side effects. 

Aside from that, Chris is pain free! He will have a PET scan to determine if he is in remission or not next Monday 11/11.  It sounds like a bone marrow transplant might be on the table eventually, even if he is in remission, but we will cross that bridge after getting the PET results.

Please keep the positive thoughts and prayers coming that Chris will finally have some reprieve from this terrible disease.

Thanks for all of the continued support.

V

Comments

Post a Comment

Popular posts from this blog

WEDNESDAY, JULY 31st, 2019 Today, Chris had his blood draw and meeting with Dr. Shah. At the meeting, Dr. Shah discussed Chris's PET scan results from Monday.  His PET scan looks significantly better, but there is still some residual disease.  Additionally, there are two new areas of concern; one in the left axillary lymphatic region and a second in the prevascular (chest) lymphatic region.  They are relatively small, but were not noted on the first PET scan.  Also of concern is that one of the areas of affected in his abdomen has worsened.  As a result, Chris is getting a biopsy of the left axillary lymph node of concern today.  He will also have a LP tomorrow to check his CSF for involvement again. The possible involvement of his retina makes CSF involvement concerning.  Chris will not be starting chemo today.  Dr. Shah will be changing Chris's chemo regimen based on the results of the biopsy, LP, and meeting with the ocular oncologist on Monday.  We will be meeting w
Read more
TUESDAY, SEPTEMBER 10th, 2019 So Chris received some encouraging news today. Yesterday, Chris had a stat LP to check his CSF for lymphoma and also deliver a dose of intrathecal chemotherapy.  Additionally, he also had a stat CT scan to check for more areas of lymphoma because of his increased left abdominal, left hip, and left knee pain. Today, Dr. Shah came to see us during Chris's chemo and shared with us that his CSF was negative for lymphoma. Additionally, Chris's CT scan showed that the lymphoma in the abdominal area actually appeared necrotic from the radiation and was shrinking in size.  While Chris does have a few small areas of lymphoma in his left abdominal area, it would appear that his pain was actually the result of a large area of inflammation in that region; likely, a result of the radiation Chris received.  Chris was started on dexamethasone (a steroid) yesterday to help with the inflammation and has experienced very minimal pain since taking it. Unfortu
Read more
TUESDAY, AUGUST 6th, 2019 Chris had his follow up with the ocular oncologist yesterday. After getting several different types of pictures taken, the oncologist was confident that the spots on Chris's left retina were cotton wool spots and not lymphoma.  "Cotton wool spots are small yellowish-white deposits (resembling cotton fluffs) in the retina. They represent swelling of the retinal nerve fibers. This swelling usually occurs because the blood supply to that area has been impaired and the decreased blood flow has injured the nerve fibers in that location." ( https://nei.nih.gov/faqs/retina-cotton-wool-spots ) As a result of yesterday's meeting with the ocular oncologist, Dr. Shah feels confident that Chris does not have lymphoma in his CSF or brain; as such, Chris started the Gemcitabine/ Dexamethasone/ Cisplatin chemotherapy R-GDP) regimen today.  This chemo regimen does not cross the blood brain barrier typically, but Chris is receiving an increased dose of Ri
Read more