Hi Ian

I’m at first relapse and my paraproteins have been rising very very slowly over the past two and a half years since finishing induction Revlimid etc.

The MDT at the main hospital apparently said I was to be treated again when the PP’s reached 50. It got to 54 and I was started on velcade, melphalan and prednisolone. I’ve just finished…[Read more]

Have you tried talking to your GP about your concerns. They might refer your dad for a second opinion.

I know how you feel though. I used to have a brilliant consultant who saw me threw MGUS then when it became active myeloma. I had absolute confidence in him. Sadly he retired at the beginning of this year. I am now in first relapse and am on…[Read more]

C & Gregg

Thank you so much for your replies.

I shall be phoning the info nurse about my having am extra week break. I don’t see it can make a lot of difference. My PP’s are down to 18 from 54, so one extra week surely can’t be detrimental.

Unfortunately I’m not near a Maggie center. Wish I was as I’ve heard such good thing about them. I did go…[Read more]

Hello Peggy

I would suggest you call either 111 or an ambulance straight away. After 7 cycles of treatment,for your husband to suddenly start behaving in this manner suggests something is going on. Be on the safe side.

I wish you the very best and hope your husband is ok. Keep us informed how things go.

Best wishes

susie

Hi Eve, I have not had dialysis tho at diagnosis time went to around 5! They repeated my blood tests as didn’t know how I was standing (I was a fit 50 yrs) I was told by someone on the forum (tho in a private thread) that kidneys could improve and his improved about 3 yrs later and he also told me of a friend who went through SCT on dialysis and 4…[Read more]

Oops for typos meant dialysis me not finalise me! Not ready for that yet!

Hi Eve, I had my Sct with a kidney function of 20+ maybe 23ish – I can’t remember details now as it was 31/2 yrs ago. SCT carries greater risk with poor kidneys but you do have a lower dose of melphelan to compensate. The Sct did not impact the kidneys further and 31:2 yrs later with no further treatment they average around 32-37. It took about 18…[Read more]

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 Mervin, Sorry to hear you are relapsing. As I am sure you know by now Mm is very individual and individually unpredictable so stats may or may not be relevant to you and yours. I have always been told the 1st Sct will give you the longest sct remission period and you can expect half of that again with the second and that is why those of less…[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