[susieParticipant]

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 when my 4th velcade is due. At the rate I’ve done so far I wont be having it.

One good thing from today, the locum I started this thread about has gone. They apparently had many complaints about him, so I felt vindicated.

Hope everyone is doing better than I am.

Best wishes

susie

[susieParticipant]

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

[susieParticipant]

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 ?

My hospital isn’t the main one within the trust. In the last year its care leaves much room for improvement. Half the staff have left and they can’t recruit apparently. That’s the NHS of today I suppose.

I don’t really know other myeloma patients there. I did join a support group held at the main hospital but I found them so “clicky” I stopped going.

Best wishes to you

susie

[susieParticipant]

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 agree with me at all, so they were perfectly happy to stop it.

I do find these days you have to stick up for yourself when receiving NHS treatment. They are under tremendous pressures but are usually willing to listen.

All the best

susie

[susieParticipant]

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 feel very ill and lasts about 3 days. The medical team appear to take no notice of it. I also have no appetite and can’t eat anything. I have come to the conclusion the cause has to be the velcade.

You don’t say which chemo regime you are on. It is very important you take the steroid after food and preferably with milk.

I wish you all the best.

susie

[susieParticipant]

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 infection meantime.

How I hate all this. I had an awful weekend with extreeme acid reflux and vomiting. Didn’t know if it was the meds, an infection or some chicken I had eaten.

Hope you are keeping well.

Best wishes

susie

[susieParticipant]

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.

[susieParticipant]

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

[susieParticipant]

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

[susieParticipant]

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

[susieParticipant]

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

[susieParticipant]

Thanks Greg. Will do. Take care.

[susieParticipant]

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

[susieParticipant]

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

[susieParticipant]

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 today its only a small dose and they don’t get many reports of major side effects. So I hope that’s correct. My consultant told me at the start of my last treatment “most people sail through this with no problems at all” Needless to say when I felt so bad I thought something was wrong.

Best wishes to all.

susie

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