Hi everyone and let me start by saying thank you to all forum contributors. I haven't spent a lot of time on this website or forum yet, but it feels good to know that there is a family of fellow folk out there who have been on the journey which I am just starting.
I am a 61 years old male engineer. My story starts 2 weeks ago with a visit to my doctor for rib pain and backache, a concern that my urine flow was slowing, and some symptoms of depression. He ran blood tests and urine tests and sent me for a chest Xray. The Xray showed an apparent opacity in the pleura and he quickly sent me for a backup chest CT scan. The CT scan then showed multiple lesions of the ribs and a few vertebrae, and combined with the unusual blood results, to his credit, he correctly diagnosed multiple myeloma.
He then sent me to a hematologist, where I had a bone sample taken from my pelvis. I have a return visit scheduled for Friday when I expect he will outline his planned course of treatment, so currently I can't give a lot more details as I just don't know yet.
My current concern is how to break the news to my sister and 90 year old mother in England. My mother is one of those dear sweet old ladies who worries about everything on everyone else's behalf. We often joke that if Mum isn't worried about something then it is time to start worrying. The first thing she will try to do is find a reason to blame herself - did I pass on bad genes? should I have stopped their Dad smoking? what did I do wrong? I can't imagine she will sleep for months after hearing this news.
I hate to put her through that but not telling her seems dishonest. Possibly the best action at the moment is to wait for next Fridays meeting at the Hospital and then I will at least be able to answer her concerns with greater accuracy and maybe shine a less gloomy light on the topic.
To be continued.....
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MattSchtick - Name: Andy
- Who do you know with myeloma?: me
- When were you/they diagnosed?: Feb27 2014
- Age at diagnosis: 61
Re: G'day from Australia
Hell Matt,
So sorry you are now a member of the club. We are a hearty bunch though!!
Ironically, my dad passed away 2 weeks before I started having symptoms. I've often spoken with my sisters about how grateful I am that he hasn't had to see me with my battle as he was a chronic worrier like your mother.
I can't give you any advice on how to proceed, as I think that is a personal decision that only you can answer.
I wish you the best on your journey and there are many fine folks here as well as medical professionals to lend support.
Welcome to the boards!
So sorry you are now a member of the club. We are a hearty bunch though!!
Ironically, my dad passed away 2 weeks before I started having symptoms. I've often spoken with my sisters about how grateful I am that he hasn't had to see me with my battle as he was a chronic worrier like your mother.
I can't give you any advice on how to proceed, as I think that is a personal decision that only you can answer.
I wish you the best on your journey and there are many fine folks here as well as medical professionals to lend support.
Welcome to the boards!
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Guitarnut - Name: Scott Hansgen
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Sept 2011
- Age at diagnosis: 47
Re: G'day from Australia
G'Day Matt
Will be thinking of you on Friday, its not an easy time for you and I know with having elderly parents myself the worry of upsetting them.
I would say u r right to wait until u have a plan but in my opinion...and I know ppl see things differently...if ur mum is 100% compus mentus tell her as soon as u feel able and tell her in such a way that you think your mum will cope best. Perhaps u want one of your family at home to alert your mum to the fact that u r having tests, this at least avoids her facing the bolt out of the blue. I think the main thing to remember is that your mum is your mum and she doesnt stop being your mum even when you are 61 and she is 90 and she will want to provide you with as much support as she can even if she is far away. Elderly people can have pretty amazing attitudes towards things, they have seen a lot, your mum has lived through a world war and although you say she is a worrier she must have something that helps her cope with stress or she would not be around today. My dad is 85 and a worrier and mum 82 and not a worrier, maybe they complement each other?
I wish you all the best with this extremely difficult time. Kay
Will be thinking of you on Friday, its not an easy time for you and I know with having elderly parents myself the worry of upsetting them.
I would say u r right to wait until u have a plan but in my opinion...and I know ppl see things differently...if ur mum is 100% compus mentus tell her as soon as u feel able and tell her in such a way that you think your mum will cope best. Perhaps u want one of your family at home to alert your mum to the fact that u r having tests, this at least avoids her facing the bolt out of the blue. I think the main thing to remember is that your mum is your mum and she doesnt stop being your mum even when you are 61 and she is 90 and she will want to provide you with as much support as she can even if she is far away. Elderly people can have pretty amazing attitudes towards things, they have seen a lot, your mum has lived through a world war and although you say she is a worrier she must have something that helps her cope with stress or she would not be around today. My dad is 85 and a worrier and mum 82 and not a worrier, maybe they complement each other?
I wish you all the best with this extremely difficult time. Kay
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blessthischick - Name: Blessthischick
- Who do you know with myeloma?: Me (SMM)
- When were you/they diagnosed?: Oct 10th 2013
- Age at diagnosis: 46
Re: G'day from Australia
... continued
Just got home from the hematologist and pharmacy. I was told that my myeloma is pretty aggressive and he wants to hit it hard and soon. He has given me dexamethasone to start with and some other stuff in case I suffer from dex's side effects with sleeplessness / reflux / gout. He also warned me of a few other effects and told me not to make any crazy lifestyle decisions as they are possibly the result of the drugs.
The therapy will probably then be cyclophosphamide / Velcade(bortezomib) / dexamethasone with the aim of getting me ready for an auto SCT as soon as possible.
Hopefully I can avoid any infections and major side-effects as it is a bit of a trek into the city on the train to get to the hospital, and I want the chemo/SCT behind me by Oct/Nov so that I can go to the UK for my Mums 90th birthday, so I don't want any major setbacks to the schedule.
It would have been nice if this morning's meeting hadn't included the word 'aggressive' but there you are, you have to play the hand you are dealt.
I have settled on a course of action for my 'tell or don't tell' dilemma, and my partner Jenni now knows and has been awesome, I will tell my sister next week once her visitors have gone, but I will leave telling Mum until I know how I am responding to the induction therapy.
I would love to hear from others especially anyone who has undergone a C/V/D drug combination.
Andy ( aka MattSchtick)
Just got home from the hematologist and pharmacy. I was told that my myeloma is pretty aggressive and he wants to hit it hard and soon. He has given me dexamethasone to start with and some other stuff in case I suffer from dex's side effects with sleeplessness / reflux / gout. He also warned me of a few other effects and told me not to make any crazy lifestyle decisions as they are possibly the result of the drugs.
The therapy will probably then be cyclophosphamide / Velcade(bortezomib) / dexamethasone with the aim of getting me ready for an auto SCT as soon as possible.
Hopefully I can avoid any infections and major side-effects as it is a bit of a trek into the city on the train to get to the hospital, and I want the chemo/SCT behind me by Oct/Nov so that I can go to the UK for my Mums 90th birthday, so I don't want any major setbacks to the schedule.
It would have been nice if this morning's meeting hadn't included the word 'aggressive' but there you are, you have to play the hand you are dealt.
I have settled on a course of action for my 'tell or don't tell' dilemma, and my partner Jenni now knows and has been awesome, I will tell my sister next week once her visitors have gone, but I will leave telling Mum until I know how I am responding to the induction therapy.
I would love to hear from others especially anyone who has undergone a C/V/D drug combination.
Andy ( aka MattSchtick)
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MattSchtick - Name: Andy
- Who do you know with myeloma?: me
- When were you/they diagnosed?: Feb27 2014
- Age at diagnosis: 61
Re: G'day from Australia
Hi Andy,
I'm also from Australia and I've just started VCD a couple of days ago at Westmead. So far there hasn't been any side effects except the usual ones from Dex ... some good and some bad. The good effects for me are that it reduces my back pain and gives me more energy. The bad side effects are the lack of sleep and the mood swings - make sure you warn people around you that you might be a bit "snappy"
At the end of a few months I'll probably have my second auto-SCT to consolidate the treatment. I hope all goes well for you.
Best Regards, Paul
I'm also from Australia and I've just started VCD a couple of days ago at Westmead. So far there hasn't been any side effects except the usual ones from Dex ... some good and some bad. The good effects for me are that it reduces my back pain and gives me more energy. The bad side effects are the lack of sleep and the mood swings - make sure you warn people around you that you might be a bit "snappy"
At the end of a few months I'll probably have my second auto-SCT to consolidate the treatment. I hope all goes well for you.
Best Regards, Paul
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wwoofa - Name: Paul
- Who do you know with myeloma?: Myself & others
- When were you/they diagnosed?: 2009
Re: G'day from Australia
When I was diagnosed I told my 92 yrs old mother I had anemia. Before the transplant, however, I could not keep lying . So I told her the truth BUT added the luckily the transplant would get rid of the disease for good. She either accepted it or refused to know more, often old people shield themselves from pain. Now I am in good shape, she is 94 and I hope to stay well while she is alive. For her...and for me!
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Annamaria - Name: Annamaria
- Who do you know with myeloma?: I am a patient
- When were you/they diagnosed?: April 2012
- Age at diagnosis: 58
Re: G'day from Australia
Dear Andy,
I too was told I had the 'aggressive form' of myeloma, but I wouldn't worry much about that as I am still here after nearly 10 years, I've just had to slow down a bit. I've had 3 lots of chemo so far (Velcade mostly - terrible stuff, but does the trick) and a stem cell transplant originally. I lead a great life, also caring for my hubby who has Parkinson's, but we laugh a lot and have lots of time now to 'smell the roses'.
I've had no chemo or anything now for more than 2 years, but my kappa light chains are beginning to soar again, so some sort of treatment again is not far away for me. Since my diagnosis, I found it wasn't the end of the world after all.
Jennifer
I too was told I had the 'aggressive form' of myeloma, but I wouldn't worry much about that as I am still here after nearly 10 years, I've just had to slow down a bit. I've had 3 lots of chemo so far (Velcade mostly - terrible stuff, but does the trick) and a stem cell transplant originally. I lead a great life, also caring for my hubby who has Parkinson's, but we laugh a lot and have lots of time now to 'smell the roses'.
I've had no chemo or anything now for more than 2 years, but my kappa light chains are beginning to soar again, so some sort of treatment again is not far away for me. Since my diagnosis, I found it wasn't the end of the world after all.
Jennifer
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redcarnation - Name: Jennifer
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: 2004
- Age at diagnosis: 49
Re: G'day from Australia
I am on second cycle of CVD [Cytoxan, Velcade, dexamthasone - aka VCD, CyBorD] treatment and have a stem cell transplant (SCT) planned after 3rd or 4th cycle. Also having monthly pamidronate [Aredia] for bone strengthening. I have had minimal side effects, achey bones after treatment and tingling in lips and mouth from Velcade (but none in hands or feet).
Hope your treatment goes well and you get to your mum's birthday. It's good to have a goal to plan for. I feel much better since I made some plans rather than worrying about how long i will last!
Take care of yourself and avoid sick people!
Hope your treatment goes well and you get to your mum's birthday. It's good to have a goal to plan for. I feel much better since I made some plans rather than worrying about how long i will last!
Take care of yourself and avoid sick people!
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NZMum - Name: NZMum
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: March2014
- Age at diagnosis: 49
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