Tony came up with this title….from the David Bowie song.
Let’s start with Wednesday’s doctor appointment at Humber. They confirmed that the biopsy is myeloma related.
Another plasma cytoma :(
Even though we expected this news, it was still difficult to accept.
Oh goodness, cancer really sucks!
We ran into our regular oncologist who wasn’t supposed to be in. She is wonderful. She saw us and took us in her office and we discussed his results. She was sorry for delivering the news. We must give lots of credit to these wonderful doctors. They are so compassionate. Delivering bad news can’t be easy for them.
She also told us that Princess Margaret Hospital is aware of the results and that they are already considering 2-3 clinical trials that he could join. She didn’t really know what the next step would be. Even though they are a hematology clinic and equipped, PMH is really “the” one calling all the shots. PMH is “the” one place to be for topnotch treatment. So they were encouraging us that there was a plan, but still, I was scared.
Thursday we were at PMH. He is now 200.lbs (at diagnosis he was about 255 lbs.) Bloodwork showed his numbers were ok except for his platelets….they were at 68. But that could be because yesterday they went ahead with his chemo (valcade) injection and that drops your platelets. They weren’t concerned. Hemoglobin was at 85. The doctor walked in with a sad face, but as she discussed his results with him and the plan, the conversation became more bearable. Actually, we both began feeling that hope.
First of all, he qualifies for a clinical trial using Pomalidomide, Dexamethasone & Carfilzomib (PdC). They gave us a 19 page document to read and sign. He needs to be “flushed” out of all chemo for a two week period. That begins yesterday. Also, his platelet count needs to be 75 in order to qualify. He’s currently at 68, but it is probably because of the chemo just given on Wednesday. It will rise. Not worried.
Next week he goes for his screening visit. Medical history, skeletal survey, physical exam, vital signs, performance status, 24 hour urine collection, urinalysis, blood samples, pregnancy test (if female), disease assessments and plasmacytoma evaluation. The report explains the routine to taking these 3 drugs. It explains all the side effects (he’s already getting most of them)
The last thing was the measurement of these tumors. They are visible now. They are darkened. They are warm to the touch. They are beside each other, clearly separate on his left side near the waste.
15cm x 7.5cm & 2.5cm x 3.5cm.
Today, they did a CT scan of his left thigh. This swelling has not changed in size. Actually, it looks smaller. I’m wondering if it was just swollen and nothing related. Too much walking and just stressed the area.
He also has three more lymph nodes effected deep inside, which even though is a concern, they are more concerned with his left side. He continues to be tired, low energy, not eating properly. Everything still tastes funny to him. Favourites are no longer his favourites. It is getting harder and harder to feed this guy. He did begin to take the Ridilin. He has become quite the chitter chatter.
If this fails, they will be re-introducing the Dpace again. He responded instantly to it. But, your body cannot take too much of this. So there is hope again. Need to fund raise for that walk! Need to get more $$$ for those researchers. Need to get more drugs approved here in Canada!
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Please help us save lives.
Help me help Tony and others battling this horrible disease.