Recently diagnosed Myeloma

Hi Jom74.   Vespa here. AKA. Kevin.  Welcome to the forum    And sad that you are here !   I am 18 months post. Stem cell transplant and in Remission!    To reach a diagnosis with no bone ligament damage from MM is good to catch it early. And deferring  treatment until post Christmas is a good call.     The combination of treatments are new to me in one go.    But I have had all of them as part of my treatment plan with the exception of Isatuximab.     Dexamethasone was always taken on the day of Velcade and the day after.  This combination made me feel strong invincible even !      Lenolidamide was given to me and many others as e go to maintenance drug post stem cell transplant!    You sound strong !  And having support of family is so important to us patients.     I think keeping your independence is great if you can. Bulet people help and rest when your body needs it!    Most injections are subcutaneous and given in the abdomen and not at all painful.     You may have to take other medications to manage side effes.     You are making good decisions if I may say   Very pragmatic.  Stay strong and be  aware more than fearful !   Treatments are unbelievable for us now    I am just a young un at 68!    But enjing my life family grandchildren!      Macmillan has great resources to help us and our carers   On line and as pamphlets   Good luck     Kevin 

Thank you Vesta. Your support and encouragement means a lot  

Definitely less afraid this morning!

I’m extremely independent, always have been  I have, however, taken on board what you say about accepting help. 

My mix of drugs will be given via drip and I’ve been warned that I’ll be taking an armful of medication to combat side effects. SCT not an option owing to my being 70+.

I do realise that I’m fortunate that my own myeloma has been caught early and as for now, I’ll enjoy time with my family and then onward and upward. 

You’re an inspiration. 

Hello Jom,

Don't be scared especially of side effect which may or maynot happen.  Just look after yourself and do what your body tells you.  To give you encouragement my story is as follows and I am 82.

I was diagnosed with a rare form of myloma. Kappa free light chain. in March this year.  As you probably know you are suposed to have a few, about 20 or so.  I had 10,700

 my kidneys do not filter properly so have to drink, drink and drink up 3litres a day.  Not a problem.

As I am an oldi had to see a cardiologist who said my heart was good but the doppler results were even better.  No blockages and better than people half my agr........

I stared the treatment with daratmumab and lenolidamide plus other meds.  After three weeks my blood test came back.  I was down to 500 light chains.  My lovely specialist said it was spectacular.  Another 3 weeks down to 200 and I was almost in remission. The cancer had not spread anywhere but I still had too many light chains, still have but now going down slowly.  I am in remission and on maintenance treatment.  Tomorrows the day.  I feel quite good, only a couple of problems from time to time and they are my appetite or lack of it and the runs

I have never smoked and have always done a lot of walking.  I had a good walk this morning and then a rest and o fcoure our a drink or two (water and more water)

  As an afterthought my specialist told me, waving her hands around that I would live a long time.  She said I was by no means her oldest patient she had a lady of 91 who was till going strong. 

I wish you all the very best for Christmas with your family.

Regards,  Pat

Pat

What can I say?

You’ve given me hope beyond belief; thank you for responding to my Forum message. 

I know that my cancer has been spotted very early and that there is an excellent chance of being around for a long time to come but, your message has left me smiling and less stressed. 
Especially as you’ve told me your age.

All my organs are functioning well and no symptoms yet. 

I wish you the very best and thanks again for your support. 

Regards, Jo

what a wonderful post Pat,  an inspiration to us all,       Kevin  

Thank you Kevin, I think we all need to know there can be light at the end  or during the treatment and more than that Hope for our futures even if it is only one day at a time.

I have been extremely lucky and have a wonderful team.  My doctor is young and very enthusiastic with the waiving of hands and is so positive with her patients. Just what I needed.

  Pat 

So glad to hear.  Glad you are smiling, it sounds good.  I go for my treatment tomorrow Dara always knocks me for six and then the Lenolidamide in the evening.  I will be in bed by 7 so Wednesday will be a very quiet day.  But hey the day after will be back on my feet.

Keep smiling.  Regards Pat

Hi Jo,

You can do this! The cancer diagnosis is a shocker to receive but the world has moved on: people can now live with myeloma for a long, long time!

You asked if anyone has experience with your planned treatment. Short answer: more or less.

Caveat: side effects of myeloma drugs vary enormously from person to person, but I can give my experiences.

I have experience of dexamethazone. The side effect that has dominated for me has been sleeplessness. This is pretty normal. You may have heard of the pop group Dexy's Midnight Runners: the name came from them dancing at midnight because they took dexamethazone! After a large dose (20mg I think) of 10 tiny tablets, it took 2 nights of little sleep to get back to normal. It also temporarily boosted my appetite. Using the past tense as the dose and side effects are much less in my 2+ years so far in remission.

I also have experience of a drug very similar to Isatuximab, called Daratumumab (dara for short). Isatuximab is injected over a few hours. Dara causes me what I can best describe as semi-diarrhoea and fatigue for about 48 hours. I am still getting that every 28 days, to help keep me in remission. One difference with Isatuximab is that, I understand, the first dose can have more side effects before the body then gets used to it.

Lenalidomide: this is a daily capsule. Many people get Thalidomide instead. Again the two are similar. Side effects particularly vary with this one. I used to get that both when my myeloma was active and in remission, but a few months ago it was stopped as my platelet counts have been too low.

Bortezomib: another injection. This works in a slightly weird way: some supplements and 'healthy' food and drink become downright harmful when combined with Bortezomib. In particular, vitamin C supplements and green tea extracts stop Bortezomib from working.

I hope that this is some help to you.

Hi Chicken2

That helps a lot so thank you. In the clear light of day and having received such warm, helpful responses, this no longer sounds so terrible. 
I know that I’m strong enough to get through this; I just needed reassurance and I’ve now got that. 
I’m going to take it one step at a time and face each challenge as it comes. 
Jo