Well I arrived at the hospital this morning at 9am expecting to receive my first injection of Velcade. I had a cannula put in my arm and blood taken and sent of to somewhere else in the building to check my levels and match for blood and platelets. I had to wait a while before the results came back so I spent a few hours just sitting and waiting and reading a magazine. At about 11am I got the results. My blood count was 7.2 (should be 14) and my platelets were 11 (should be 55) so they had dropped since my last visit again. The Doctor came around to see me and told me that he wasn’t going to start me on the Velcade today as they had done further test on the bone marrow they extracted during my biopsy and it was showing a significant percentage that was not plasma related. He explained that he wasn’t sure if the bad measurement that he was picking up in the test was paraprotein (the bad stuff I don’t want) or something else (bad that I didn’t want) so before giving me the Velcade he wanted to discuss it with one of the specialist to find out if I have something else wrong with me as well. It probably wouldn’t change the method of treating the myeloma, but he may need to start something else at the same time, depending on what it was.
From my blood results and the bruises I have on my body they decided to give me three units of blood and one unit of platelets. This took all day and didn’t finish till 5:30pm. Just before I finished the platelets Dr Lee wanted to see me again. He ran through the options available to me again and told me that he found out that the clinical trials he told me was an option last time, aren’t and option as for me to go on the trail I needed to be at least 18 after a stem cell transplant. His colleagues had told him to make sure that I was informed that the Velcade/Dexamethazone has a risk of relapse quite quickly. The other option was another transplant, but as no data was available to show if it would work or not the risk would be the same, if not worse as I could go through all the trouble of a transplant only for it to fail again. This option is still open to me at a later date though, so I’m sticking with the Velcade and Dex. If there is no significant results after a few cycles, I can try Velcade + something else that I can’t remember the name of. This would be more aggressive to the body and my hair would fall out again and I definitely wouldn’t be able to work. On the work point of view, he seemed to imply that I would be spending quite a bit of time at the hospital regardless of what treatment I go for and that working might be impractical anyway. I will approach this though when it becomes a problem.
I feel as though I have more energy already and should feel strong as the hours pass. I’m back again on Thursday for more blood and platelets and to start the Velcade (hopefully). I’m hoping that I will get some good news at some point in the treatment – so far it has only be going from bad to worse!
I'm sorry to hear all that Sean. You are really going through the Mill. You'll be tired of hearing us say all the best but I wish it all the same. Carol J xxx
ReplyDeleteHello Maria your flowers are beautiful and well deserved. Love to you xxxxxx
well, you don't do things by halves do you!!! You just want nurses around you and sympathy. :-) How i wish that was true, just a fetish for nurses. Well, one positive, you feel more energetic. That's good news! Another positive, you still have a sense of humour, another, your still with us, yet another, your still fighting! Keep it up. Your
ReplyDeletea brave man and you have lots of support.
I really think one has to carry duct tape around some of these doctors. REALLY, they go to start you on a protocol and warn you that most relapse quickly on it. So unnecessary and
ReplyDeleteI have never heard that before. Velcade is a very effective drug for MM. It certainly has worked for Tim and others I know.
Anyway, hoping it sends your M-spike way down.
Also, the drug they were probably talking about is Cytoxin or cyclophosphamide (sp?)It causes hair loss and is sometimes added to Vel/Dex to try to get a big kill down of the MM. Better off staying off it until your good blood counts recover some as it is very hard on the marrow and can send counts way down. If they do decide to do another transplant, they should be using another chemo along with the Melphalan to do the conditioning. Busulfan is one that they use. Tim's docs, and other MM specialists, would always add something to increase the chance of it working better since the Melphalan-alone transplant didn't work well. Sorry for the doctor-like post. And bruising? Did you stop wearing your bubble wrap?