Hello all,
I was officially diagnosed on Febuary 22. Started out with a pain around my upper front hip that developed into a limp in 2014. At first we thought it was a pulled muscle (November 2014), then with no doubt it was a hernia (December 2014). After an X-ray it was a no brainer. Apparently a lesion had set up and eaten out a 4 inch (10 cm) area at the top neck of my femur requiring immediate attention in the form of a titanium rod the full length of my femur, at which I am still rehabbing.
I have completed 4 cycles of treatments (Velcade, Cytoxan drip, dex - VCD / CyBorD). I haven't had a treatment in almost 3 weeks now. The last time I asked, my M-spike was at 0.3 g/dL with one more cycle to go.
In the meantime, we have been gearing up for a stem cell transplant in the first of June, give or take a week. And we know what the tests and blood drawing that requires (bone biopsy hurts!)
The big kicker to this is my wife has just finished up a 2 year fight with a double mastectomy in battling breast cancer. This past November she had her final visit saying all is finally well. This was not an easy fight for her. She had multiple complications that required a dozen surgeries. Then, when we think all is clear, it seems I was next in line. We have 4 children from ages 9-18, combined family.
This has been hard for me to take in and absorb I think. My wife has been such an inspiration and care taker and I truly love her and couldn't have made it this far successfully without her. She has kinda led the drive on learning about this disease. I think I was just scared of what I might find. Maybe it would be worse than what I had already been told. But, as of late, I have made it a mission to stand alone and face this disease as well myself and head on.
This is the first time that I have typed this out and have been as open. So thanks for reading, for those who do, and good luck on your fight as well. Be it cancer or love.
Walking the Path.
Forums
7 posts
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Mhibberts - Name: Michael H
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Feb 22nd 2015
- Age at diagnosis: 42
Re: New member / introduction - diagnosed this February
Welcome to the forum, Michael. I'm so sorry that for the reason you're here, but I'm glad you found this community, and I hope we can help you and the rest of your family as you cope with your myeloma diagnosis.
You've been through a lot already, and your upcoming transplant won't be a walk in the park, even at your young age. Hopefully, your M-spike will have gone down a bit more during your most recent cycle of treatment, and then the melphalan during the transplant process will pound, pound, pound the disease further into submission.
Myeloma is a complicated disease, not least because there are no clear answers for some of the biggest questions doctors and patients face when dealing with the disease. You also have to learn about all the different lab results to track, complicated stuff like chromosomal abnormalities, and then there are all the different treatment options. You'll learn a lot by just reading through the discussions here in the forum and all the articles here on the site. But, if you have more questions, just let us know. We've either been there, and done that, on our own or as caregivers.
Take care and good luck!
You've been through a lot already, and your upcoming transplant won't be a walk in the park, even at your young age. Hopefully, your M-spike will have gone down a bit more during your most recent cycle of treatment, and then the melphalan during the transplant process will pound, pound, pound the disease further into submission.
Myeloma is a complicated disease, not least because there are no clear answers for some of the biggest questions doctors and patients face when dealing with the disease. You also have to learn about all the different lab results to track, complicated stuff like chromosomal abnormalities, and then there are all the different treatment options. You'll learn a lot by just reading through the discussions here in the forum and all the articles here on the site. But, if you have more questions, just let us know. We've either been there, and done that, on our own or as caregivers.
Take care and good luck!
Re: New member / introduction - diagnosed this February
Hello, M Hibberts,
At the time of my diagnosis in December 2013, I had the same problem as you – a terrible lesion at the neck of the femur that required urgent surgery to drive an " intramedulary nail" implant (metal bar) down the inside of the femur from my hip to my knee. Once I got over the swelling (which seemed to take forever), my leg is as good as new.
I also took the "CyBorD" chemo combination like you did, with great results. I took it for five months (January to June of 2014) even though it did the job in just the first three months. Then I went forward last summer with high dose chemo and an autologous stem cell transplant. Although I am an old guy, age 68, I was judged to be healthy enough to do the transplant as an outpatient!
Anyway, my thoughts are with you because you are walking the path that I walked just a year ago. For reference, look in the "Treatments and Side Effects" forum. The first discussion thread, called "Useful Links to Existing Forum Discussions", has a link to my transplant story, or search for the word "Mayo" and look for me, Mister Dana. If you search all forums for the word "nonsecretory", you will come across my account of my diagnosis and bone surgery, if you want to compare experiences.
Dana
At the time of my diagnosis in December 2013, I had the same problem as you – a terrible lesion at the neck of the femur that required urgent surgery to drive an " intramedulary nail" implant (metal bar) down the inside of the femur from my hip to my knee. Once I got over the swelling (which seemed to take forever), my leg is as good as new.
I also took the "CyBorD" chemo combination like you did, with great results. I took it for five months (January to June of 2014) even though it did the job in just the first three months. Then I went forward last summer with high dose chemo and an autologous stem cell transplant. Although I am an old guy, age 68, I was judged to be healthy enough to do the transplant as an outpatient!
Anyway, my thoughts are with you because you are walking the path that I walked just a year ago. For reference, look in the "Treatments and Side Effects" forum. The first discussion thread, called "Useful Links to Existing Forum Discussions", has a link to my transplant story, or search for the word "Mayo" and look for me, Mister Dana. If you search all forums for the word "nonsecretory", you will come across my account of my diagnosis and bone surgery, if you want to compare experiences.
Dana
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Mister Dana - Name: Mister Dana
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: December 2013
- Age at diagnosis: 66
Re: New member / introduction - diagnosed this February
Your wife just having got over her breast cancer is a big kicker. Your wife and you have been through a lot together these last few years, and even though I have myeloma, it would be hard for me to understand how tough this must have been for you. It is good to have the strong support for each other you two have through all of this and a reason to keep going. Going through this alone would be very hard and so would going through this with young children. I hope all goes well with your SCT. I hope you can get into complete remission so you can get a respite from all this cancer malady at least for a while. Best wishes,
Eric
Eric
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Eric Hofacket - Name: Eric H
- When were you/they diagnosed?: 01 April 2011
- Age at diagnosis: 44
Re: New member / introduction - diagnosed this February
It sounds like you are responding well to your treatment and hopefully the transplant knocks you in a complete response and you stay there a long while!
I am younger (37) so I can understand some of the family stress, work stress, etc. that is a bit different to younger adults dealing with cancer. My husband has good health, so I don't know what it would be like if he was also sick, very difficult situation. I encourage you to build a support network outside of your immediate family. It took us a while to do this but now I am 5 years into myeloma, we have build a network of friends who understand our cancer (church connections, young adult cancer community connections, extended friends and family etc.)
You have taken a step by posting on here and sharing your story. I know at first I wanted to keep everything very private, but now we are more open about things.
I am younger (37) so I can understand some of the family stress, work stress, etc. that is a bit different to younger adults dealing with cancer. My husband has good health, so I don't know what it would be like if he was also sick, very difficult situation. I encourage you to build a support network outside of your immediate family. It took us a while to do this but now I am 5 years into myeloma, we have build a network of friends who understand our cancer (church connections, young adult cancer community connections, extended friends and family etc.)
You have taken a step by posting on here and sharing your story. I know at first I wanted to keep everything very private, but now we are more open about things.
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lys2012 - Name: Alyssa
- When were you/they diagnosed?: 2010, Toronto, Canada
- Age at diagnosis: 32
Re: New member / introduction - diagnosed this February
Thanks for the big welcome guys, I received my port and start the Nup Wednesday and yesterday.
Cheryl; you are correct on digging deep on the chain type, sub class and categories etc..my wife immediately started digging deep and asked questions that they were not prepared to answere and what we researched already seems to give better hope. So thanks for the suggestion.
Eric; this has been a long 2 1/2 years. And the kids have been excellent. No trouble and good grades, that makes me happy.
Lys2012; Lys this has been hard. After the smoke cleared from the initial diagnosis it seemed I had a no friends or family. I have 2 brothers that are minsters and have their on church, I have only saw one of my brothers one time since it all(no hard feelings between us either). And the other sparing(I do not hold grudges btw) So things like that put me in a slump but I am trying to reach out like you suggest. It seems to be helping, this post is already seeming to help.
Dana; it is amazing that you have had the same procedure with the femur. I am worried about the recovery so thank you for the links. I think I'm not being patient enough. Knowing you came out well gives me better hope and can maybe start look Forward to some things again.
Thank all of you for your words and advice. I needed this mentally.
Cheryl; you are correct on digging deep on the chain type, sub class and categories etc..my wife immediately started digging deep and asked questions that they were not prepared to answere and what we researched already seems to give better hope. So thanks for the suggestion.
Eric; this has been a long 2 1/2 years. And the kids have been excellent. No trouble and good grades, that makes me happy.
Lys2012; Lys this has been hard. After the smoke cleared from the initial diagnosis it seemed I had a no friends or family. I have 2 brothers that are minsters and have their on church, I have only saw one of my brothers one time since it all(no hard feelings between us either). And the other sparing(I do not hold grudges btw) So things like that put me in a slump but I am trying to reach out like you suggest. It seems to be helping, this post is already seeming to help.
Dana; it is amazing that you have had the same procedure with the femur. I am worried about the recovery so thank you for the links. I think I'm not being patient enough. Knowing you came out well gives me better hope and can maybe start look Forward to some things again.
Thank all of you for your words and advice. I needed this mentally.
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Mhibberts - Name: Michael H
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Feb 22nd 2015
- Age at diagnosis: 42
Re: New member / introduction - diagnosed this February
I take it by now you have had you SCT. If this is true, then you are spending most of your day on the couch and wondering if you will ever have energy again. You will. It's a tough go but worth every minute of it. Take care and hope your wife is not wearing herself out.
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deb b
7 posts
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