[sarahmParticipant]

Hi all,

My dad was diagnosed 3 weeks ago with MM, I would like to say hi to everyone here and hopefully will start to see a little clearer through talking to others on this forum.

You never think this ugly disease will ever be part of your life but sadly it has made it’s way into my familly.

I’m not only devastated, I’m also scared and I want to be the best daughter I can be to make sure I can do the best for him. He’s currently on his first cycle of VMP, anyone willing to share their experiences, side effect, I would be very grateful, I want to understand what he’s going through. Could anyone tell me how long before the drugs start working and the protein start to drop.

Much love and healing light to all

[rebeccaRParticipant]

Hi sarah, sorry to hear about your dad – how old is he and how was he diagnosed? I have not had VMp so cannot help on that front, however, please be aware everyone reacts slightly differently to chemo and so you may get all or hardly any of the side effects. MM is a very unique and individual disease. This is devastating, life changing news as you will never be rid of it – yes he will get remission but you will then be in the next phase of monitoring and wait and watch for its return. This is a marathon not a sprint. My advice to you in how to be the best daughter is – read and learn as much as you can – use this site and the US myeloma beacon site only. Learn what you can but do not tell your father everything you learn – by that, I mean, let him run his own race – he may not want to know everything, he may want to just be drip fed as treatment progresses and concentrate only on his treatment at the moment. Perhaps let him know you are researching and get him to ask you if he has questions. We all react differently and there is always an element of denial and not wanting to know it all – just what you need to know at that moment in time to get through that particular hurdle. Before you go into consults (I used to record them) get him to verbalise what he would like to know and write it down. The bone marrow biopsy will give you a cytogenic profile which will determine if he is low/standard/high risk. You may want to know this but your father may not so make sure the questions asked are those your father wants to know the answer to only. Also, when you have cancer it can become all consuming and the main topic of conversation when everyone knows but he may not want to talk about it much. I have never really discussed anything about it with anyone but my husband – and even that’s limited and that’s because I never wanted it take over my life – I want to lead a normal life and that does not involve giving C anymore air time than I can possible can. We all react differently but make sure your father is in charge and owns this – it his disease not yours and I suspect he may want to protect you as much as possible from the outfall of this. What got me through treatment was short goals and lots of little treats – nothing much – could be going out for coffee etc but taking time out of routine to do “nice” things, family things, outings. Talking about it never helped I found it depressing and dragged me down but a nice walk, meal, cinema etc uplifted my mood and made everything copable. Good luck,

Rebecca

[greenersParticipant]

Hi sarah my husband was diagnosed in February, he is on CTD  as is on his second cycle. He also had fractures to his vetebrae. It is a difficult and devastating. Disease like the previous reply said side effects vary  my husband experiences constant pain, fatigue, nausea constipation, it is very upsetting to see your  loved ones suffering, but you have to take little steps take the good days and enjoy and  accept the bad days. It is a long road which no doubt has ups and downs.

family are really important we have a daughter and son and they and their children are the best medicine to keep some normality and forget about  having MM and be there to support each other.

 

 

[chalkieParticipant]

Hi everyone

this is the first time I have been on this site, my husband was diagnosed July 2014 he has had 6 cycles on the clinical trial of RCD and although his para protein came down from 43 to 2 as soon as he stopped taking any form of chemo it shot back up again. They gave him 3more cycles of Valcade and a similar thing happened again, he is now awaiting SCT but because they cannot give him time off medication as his MM is aggressive they are harvesting him in the next few weeks then he will be given large does of chemo to get his level down….then no delay straight to transplant. He is in terrible pain with nerve damage and can hardly walk so devastated does not come near. I feel for everyone on this long journey as this medication seems to effect everyone differently and I would appreciate any feedback as to how and what we can do for the pain?

Ann

 

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