Hi, Had my appointment again today. Bloods very low, with Neuts now at 0.8, WBC 2.4, Plts 127. Despite this they went ahead and gave the velcade. The consultant did come and see me and he thinks its the melphalan causing bloods more than the velcade. He warned me that I’m at real risk of infection which I find very worrying. I just await next week…[Read more]

Thanks cygnet.

I will try the info nurses and see if they can suggest a way forward.

I didn’t get his name. He was Indian/Asian and didn’t speak particularly good English.

I shall ask to see my named consultant but whether they will comply I don’t know. Will give it a try.

Thank you for your good wishes

Best wishes

susie

Hi Jan

I just wanted to thank you for responding to my thread.

I still feel disturbed by the whole thing and I dread going on Thursday for my velcade but it has to be done.

May I ask, when you changed your consultant how did you do it and did you move to another within the hospital you were being treated at or did you go to another hospital…[Read more]

Remember on thing sabs, trial or no trial you do have the right to say you wish to have it once a week because you feel strongly that twice weekly is too much.

Myeloma treatment is meant to be a joint enterprise between the medical team and the patient. I was on the Myeloma X1 trial when first diagnosed and found the cyclophosphamide did not…[Read more]

Hi sabs

Very sorry to hear of your reactions to the drugs.

All I can say if it helps, I have just completed cycle 1 of velcade, prednisolone and melphalan at my first relapse. I have found that 24 hours after the velcade I have developed the most intense heartburn/reflux I have ever experienced. This is inspite of 30mgs of a PPI. It mekes me…[Read more]

Hi Greg

Had my 4th velcade today. My Neuts are now 1, however they went ahead and gave the jab. The doctor said she checked bloods and protocols and they only delay the next jab if Neuts go down to .75. The remaining bloods aren’t too bad.

I have a rest week before I go back to the hospital, so I just have to make sure I don’t pick up any…[Read more]

Hi Greg

I’ve had a read of it. I’m pretty obsessional on cleanliness and oral care anyway. I get the impression the time to start worrying is if it drops to 1 or below, so I hope it doesn’t do that before I go next week. I’m a right worrier.

Enough of me though, how are you doing.

Thanks Greg. I’ll take care. No one has mentioned anything at all about diet. What is a clean diet. I’ve never heard of it.

susie

Home from having 3rd velcade. The nurse said my bloods were fine but I’ve just noticed the neuts were only 1.5. Wouldn’t you say this was low. She went ahead and gave me the velcade though.

What experience has anyone had with Neuts at this level. I’m rather concerned.

Best wishes to all

susie

Thanks finn and Gregg.

I’m feeling bit better today, although I still feel very weak and wishy but if this is all I have to put up with, I shall not grumble. I can only assume yesterday was me coming off the pred.

I’m off tomorrow for my second Velcade. Fingers crossed.

Best wishes to all

susie

Well I’ve taken the first 4 days of melphalan and prednisolone over the weekend. All was quite fine until today. I have no energy, bit breathless when I do anything. If I’m not doing anything I feel ok.

I just wondered if anyone has been on these drugs and how they felt after taking them ?

Best wishes

susie

Thanks Greg. Will do. Take care.

Thank you Gregg

I must say I’m very anxious at the thought of taking such a high dose. With my induction I had Dex 20mgs and found that perfectly tolerable. This just seems somewhat ridiculous.

Many thanks again and best wishes to you

susie

Had my first Velcade today and picked up my drugs. I’m quite shocked at the dose of the prednisolone, its 105mgs. Seems very high to me.
Can anyone please tell me if they too have taken this high dose ?

Best wishes to all

susie

Hello Folks

Had my assessment today and will have my first Velcade tomorrow. I’ll pick up the other drugs at the same time. I’m very, very nervous at the thought of starting all these drugs again. My last lot was RCD and made me feel like death for the first 3 months till my body got used to them. My main worry is the Melphalan but I was told…[Read more]

Just to put right my last post. I had a call from haematology early the next day to say the drug was ready for me to collect. She even kindly rang late that evening to check I had got them.

I am coming to terms with the fact I have to have more treatment. I hope it doesn’t affect me too badly. My spine has been very bad lately and I wonder if its…[Read more]

Thanks for your reply Kevin.

I’ve been really down since tuesday. It’s the melphalan that’s getting me so anxious, and I’ve had episodes of quite severe anxiety. So this morning I rang my gp to try and get some low dose valium, just to calm me down a bit. I’m sure my anxiety is fueled by me living on my own.

Anyway here’s a tale to show the…[Read more]

Hi Sue,

I was on the same trial though I didn’t have a transplant. I was offered maintenance and it took me a few months to decide not to have it. I’ve had 2 1/2 years drug free and feeling very well. I feel it’s allowed my body to fully recover and hopefully when I relapse, the disease may be more sensitive to the drugs. But that’s just my own…[Read more]