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Thursday, 27 January 2011

and so life goes on

I’ve taken it all in what happened yesterday and coming to terms with it. The first thing I have to do is see how the Veclade works. I should know in about 6 weeks (to some extent) which will give the first cycle results.

I’m going to be optimistic going on the Velcade, not because I’m a positive person, but because I have no other logical option. I’m not going to be one of these people that just curl up and give up.

Hopefully the antibiotics will clear up the infection I have at the moment and I will feel a lot better and it will give a chance for my blood to recover faster.

I didn’t mention yesterday how painful the bone marrow biopsy was. The first time I had it was back on 5 Nove 2009 when I first found out I had cancer, when they did that one it was really painful and they couldn’t extract any marrow but had to roll the bone on slide to get and extract. I was hoping that after all the treatment I had that the marrow would be easier to extract. Guess what it wasn’t as painful that the first one, it was worse, at least from what I remember. I had a nurse and assistant with me and the assistant offered to hold my hand during the process. I refused the offer and told her about last time that I nearly ripped the pillows apart with the pain, afterwards she was glad she didn’t.

I seem to have an intolerance to the local anaesthetic she gave me as much as she could and when she tested hitting the bone with anaesthetic needle it was a dull pain, rather than sharp, but as soon as she put the other one in with bone corer (similar to an apple corer but not as bit) it was very painful and I could feel every bit. In the end, the only way she could get it done was if I tried breathing over the pain (women will know what I mean, well those who have given birth anyway – oh and fathers). Well that’s what I had to do as I couldn’t have any more anaesthetic. It was very painful and I screamed in pain a few times, but finally got it done. There was a man opposite to me that had the same thing done for the first time. He started his before me and I gave it some thought as to mention it would be painful, but thought I would leave him to find out for himself. Afterwards I asked him how his was, ‘I didn’t feel a thing’ he said. I guess it is just me being one of those lucky guys who nothing works for!


  1. so realy your a wimp uh mmmm i mean really unlucky lol did they not give you gas n air :D xxxxx

  2. Maybe some men are truly insensitive!

  3. Like P, I didn't know what to say yesterday. Sometimes, it doesn't matter, I suppose, what folks say, it's just a crappy day and that's all there is to it. Just know that MM NEVER behaves the same way twice in different people. Tim's doc was a pessimistic sort.I think he's gotten better now and that is mainly because even after 21 years of treating MM patients, he's been wrong tons of times when people asked him what he thought their future held. We didn't ask but he made his predictions anyway after Tim's transplant tanked. The exact opposite of what he said would happen, happened and I am not exaggerating here. He made a few other predictions when Tim went into CR, again unsolicited. He was completely wrong then too.
    I think he gave up his "crystal ball" at least with Tim anyway. Velcade is a great drug, it's newer version, Carfilzomib, is even better. Vel/Dex put Tim into a stringent complete response in 4 cycles and he's been hanging out there ever since. I wish the same for you. Hang in there. Sending Jersey hugs to you. Oh and the last time Tim had a bone marrow biopsy, I talked to our favorite Jamaican nurse, Gladys, and asked her if she'd help me whoop that doctor's butt if he hurt my Tim's arse.She said
    absolutely. Now our doc is a big lug but Gladys is a big gal herself and Tim did just fine 'cause his doc said, "you do not f*** with Gladys." I'll fly Gladys on over if you ever need another! ;o)

  4. Just read this post on the ACOR MM listserv. Thought it might be helpful information. This guy, John, lives in California. After his transplant, his numbers went up markedly. It seems his doctor told him that for about 3% of patients, the transplant stirs up the MM instead of supressing it BUT WAIT, this happened to John in 2002. He is still doing OK now. Even had a chemo-induced remission for several years.I know this sounds weird but even though you would think that a transplant not working is bad, this is not the only case that I have heard of where the people who had failed transplants still did very well and other chemos worked just fine. Tim is proof of that too. The 3 friends we stayind in touch with from his transplant days, all relapsed in a year or so. Tim is still off chemo from a Velcade induced remission and has been drug free for over 2 1/2 years now. Transplants just don't always work and for a lot more people than I ever realized before Tim had his. There is still plenty of reason to think you can have a lazy MM variety anyway.

  5. Please forgive the public comment but I can't find an email address. After reading your blog, you should ask your physician about the OnControl Bone Marrow System. It's new to the market and research shows it provides superior samples and LESS PAIN compared to the traditional procedure. Especially if you've had bad experiences in the past, this new alternative could provide you with some relief.; also see for a video of another patient's experience.

    I would be glad to send you more information -

    DISCLOSURE: I am a pr consultant for OnControl.

    Best, Lisa Owens