Continued warm thoughts and wishes directed to you and your husband.
Still thinking of you, faithfool. I hope your husband does not need more blood, and that the vomiting abates quickly.
Sorry for taking so long to update everyone. Jaceson has been doing extremely poorly and I just couldn’t bring myself to post every upset along the way. But to catch up…
He’s still losing blood and they don’t know where or why. He gets another couple of units via transfusion every few weeks. They are still looking for reasons though and he might be getting another Upper GI soon.
Next, his Portal Hypertension is acting up again. It makes him have hardening in his stomach and is extremely painful. We’ve read up more on this in the interim and it too, like the Cirrhosis, can be deadly. Especially if it ruptures.
After those two things, about three weeks ago, he noticed severe discoloration in both sets of toes. Long-story-short, despite being so badly anemic, he’s somehow started getting micro-clotting in his extremities due to his MGUS (Monoclonal Gammopathy of Undetermined Significance), which we found out about after his bone marrow biopsy.
I hope I’m not repeating this part and if I am, I apologize. It’s hard for me to keep up. Anyway, what that means is it’s a condition which paraprotein is found in the blood, making white blood cells and antibodies lower. His levels, they said, were at one percent.
Fast forward to now and they are concerned (because of the clotting problem) that the MGUS has progressed. Thus far, they’d been fighting it with steroids (which has made him gain about sixty pounds that his liver can’t afford) and Coumadin in very low doses so that it doesn’t make his Anemia worse. Add to that Lasix to try to alleviate some of the water weight. It’s a huge clusterfuck.
But that’s not the worst of it all. The doctor ordered another bone marrow biopsy (which he had today), because now they fear that since the MGUS might have progressed, it could have turned into the blood cancer, Multiple Myeloma. We won’t know for sure until the results come back in two weeks.
The horrifying part is if it is Myeloma, the prognosis isn’t good. Best case scenario is that we can hope for about seven years. Worst case is three to four. Needless to say, I’ve pretty much been a crying wreck since they first told us last week. I don’t know what to do except keep on keeping on for Jaceson. But I am even more terrified than before. So please pray for us. Me to be strong and him to be well.
It’s one thing to face a transplant, but another to try and beat cancer. We need you guys. Thanks, as always, for listening.
Kemi~
Sending more good thoughts.
Few places lonlier than having a loved one be critically ill. Will keep you in my thoughts and prayers.
{{{Faithfool and Jaceson}}}
Sending good thought your way…
Oh jeez…still wishing you well, faithfool. We’ll keep thinking good thoughts…you guys keep fighting the good fight.
-D/a
Luck to you.
Hugs beamed your way! Multiple myeloma can be treated - my mother’s was. She’s in full remission, about 3 years after diagnosis. I know she’s not your hubby, but try not to give up hope yet.
My continued best wishes for both of you.
Damn, damn damn. I’m sorry he’s doing so miserably.
If it’s of any help: my mother-in-law was diagnosed with multiple myeloma about 2 years back - at age 70 - and after a somewhat rough year of treatment (with steroids, anticoagulants and of all things Thalidomide), she’s doing terrific. In her case, the treatment was a less-aggressive one than they might have chosen because she was on the cusp of being a bit too old to risk a marrow transplant - but they wanted to keep their options open.
I know she had a lot of problems with tremors because of the meds, and she has severe arthritis in her knees and couldn’t take NSAIDs for them during that year, so she had significant mobility issues during that time.
The one concrete suggestion I could make is that you might consider taking your husband to one of the Big Guns, medically-speaking. As in, someone who makes “top 10” lists. It sounds like his case is extremely complicated, with all the organ systems involved, rather than your garden-variety ho-hum cancer (is there such a thing???).
My mother in law did a consult with a doctor in New Jersey (in Paramus, I think) - traveled from Florida to do so. There might have been someone closer to them (in Atlanta or Durham perhaps) but they have family in NJ so that would have worked better for them had the doctors wanted to do a transplant right away. While NJ is a bit far for you (I’m thinking Baylor maybe?) I can certainly get you that guy’s name.
Oh - and **Faithfool **- Typo Knig is my husband, his mother is the mother-in-law I mentioned above :).
My family and I are praying for you both.
US News has listings of top hospitals for various things:
MD Anderson - in Houston - is listed as top in the country for cancer, if you wish to pursue the uber-specialists. The article didn’t list hem/onc or hepatology among the specialties for which they ranked hospitals but I would assume such a place would be qualified there as well.
You and your spouse will be very much in our thoughts.
Prayers your way. Is Your husband going to try to get to MD Anderson? Sorry, mamazappa beat me to it…
I am sorry to her this. I wish there was more I could say. Wishing you all peace and strength.
I’m sorry and saddened to hear this.
Sending good thoughts your way. If you haven’t started a caring bridge page yet, I highly recommend it. Very helpful, both logistically and emotionally.
I’m very sorry, faithfool. You guys need some good news and I hope it comes very soon.