[stormywatersParticipant]

My father died July 10th aged 66 years following a 'short battle' with MM.

He was diagnoised in February 2011 and they suspect the MM was a secondary of two brain tumors he had in 2008 and 2010. However I found out from medical notes these were classed as benign tumors so not sure if it was the other way round and that the myeloma was the primary cancer, they did say in February they thought the way MM presented he had had it for 7 years atleast. Anyhow sadly he died following an intense course of chemo taken 6 days a week for 18 weeks and died of a heart attack , the coroner confirmed it was coronary heart disease brought on by the chemo drugs. His heart was tested in February and was deemed very healthy so I am wondering how common heart problems are on MM drugs and if patients here who are currently on drugs can confirm if they are having regular monitoring of their heart as it appears my father wasn't.

Of course I am still in shock at his sudden death we thought he had years not months to live but if nothing else good comes of this then maybe we will have raised awareness of the risks of chemo drugs on the heart and can make sure that MM patients do have their hearts regulary monitored for any complications.

kind regards, Angela.

[gina45Participant]

Hi Angela, im so sorry about your dad, it is my mum who has MM She had the chemo firstly and did ok with it, she had 12 months partial remission and then it cam back.Mum started on velcade but only had 2 lots before she became ill.She firstly got an infection and then fluid on her lungs.When mum had a ecg and echo before starting velcade she was deemed borderline but healthy enough to have the velcade. But after the first two lots they realised that she was badly affected by the velcade thus stopping it She is now being monitored on her heart and kidneys as this is somewhere the treatment does affect. Mum is 71 and has had MM for 2 years, she isnt too well at the minute but doing ok, we are waiting for the next step of treatment that is best for her xx

[eveParticipant]

Hi Angela
So very sorry to hear about your father.
It would be very hard to comment on people who are having chemo unless you know what type of chemo your father was on.was he on any special trials.
To be on the intensive chemo he must have been deemed to be fit,as your are boarder line at 65.How many cycles of chemo were given .
DVT are a side effect and can effect any part of the body,although many start in legs,blood clots are something that can develop,infections also.All are life threatening when on chemo.
Not having a lot of information,any body would be second guessing,
I know this must be a terrible shock for you,and you are angry about the way things have turned out,but when you have Myeloma you do not have much choice,you either treat it and buy time with all the dangers, or you do nothing very sad but true.

I am sure your dad would prefer you to mourn him,and not second guess the situation ,My sympathy to you and your family.Eve
At least your father tried to buy time.

[stormywatersParticipant]

Hi Eve and Gina,

Thanks for getting back. Eve I am not trying to second guess dad's treatment as much as to let people now that there may be risks to the heart. I know from experience having Kidney disease myself that we are not always monitored the best possible way when put on drugs, my old consutant put me on a drug that did not interact with another so that my potassium levels dropped to a level where I too was deemed at risk of heart attack, I was getting palpatations etc an had an ecg before they took me off the drugs. Therefore anyone on a combination of powerful drugs wether to fight kidney disease or cancer should have their heart monitored as standard, surely? I know he was on three drugs one being Thalidomide, anyway I do appreciate your reply, thank you. Gina sorry to hear of your mums problems. I do hope the next treatments are sorted out as soon as possible and that improvments are seen. Angela.

[eveParticipant]

Hi Angela
What i am saying is you cannot second guess without more information,May be the nurse on Ellane on this site might be better at explaining it than I am.
I would hate you to think your father died because he was not well cared for.
I can only tell you after every cycle bloods are checked and any problems show up and your meds are adjusted.
Have you thought about talking to his consultant,
I say this as my husband has had a few hiccups on his journey and it it a big learning curve,many people are starting there journey and they need informed information.
I hope you find the answers you are looking for.Eve

[tomParticipant]

Hi Angela

So So Sorry to hear about your sad loss, My condolences to you and your Family.

Love
Tom xx

[stormywatersParticipant]

thank you Tom

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