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Don't know what to do
In 2002 I was diagnosed with mgus. Feb 2010 I was diagnosed with myeloma. Nov 2010 I had a stem cell transplant using my own stem cells. Feb 2012 my m-spike start to rise . Now a am on cytoxin, Revlimid and steroids. Now I have to make the decision of having a bone marrow transplant. I have no siblings but they have found an identicle match. The oncologists wants to do it as soon as possible maybe in a couple of months. What do you think
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Music meme - Who do you know with myeloma?: Self
- When were you/they diagnosed?: Feb 2010
- Age at diagnosis: 53
Re: Don't know what to do
Music Meme,
Sorry to hear about your relapse. I am attaching a link to the Be the Match Registry that shows the US Transplant Centers. Make sure the Center you may have the procedure at does a lot of Allos. Autos, while difficult on the patient, are very simple procedures compared to Allos. If you plan to do the Allo, you may want to get a 2nd opinion from another Transplant Doctor since there are so many different ways to do an Allo. I am doing well so far since my Allo, but mine was part of my planned front line therapy. It is important that you have a low disease burden before the Allo (I was in my first CR when I did mine.). Best of luck with whatever decision you make.
http://marrow.org/Patient/Transplant_Planning/Choosing_a_Transplant_Center/U_S__Transplant_Centers.aspx
Mark
Sorry to hear about your relapse. I am attaching a link to the Be the Match Registry that shows the US Transplant Centers. Make sure the Center you may have the procedure at does a lot of Allos. Autos, while difficult on the patient, are very simple procedures compared to Allos. If you plan to do the Allo, you may want to get a 2nd opinion from another Transplant Doctor since there are so many different ways to do an Allo. I am doing well so far since my Allo, but mine was part of my planned front line therapy. It is important that you have a low disease burden before the Allo (I was in my first CR when I did mine.). Best of luck with whatever decision you make.
http://marrow.org/Patient/Transplant_Planning/Choosing_a_Transplant_Center/U_S__Transplant_Centers.aspx
Mark
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Mark
Re: Don't know what to do
Dear Music Meme,
I was very hesitant to have a transplant, but really didn't have much choice after 18 months of continuous treatment with all the available drugs. I needed to have an auto first, to lower the tumor burden as Mark described. Then I had a mini haplo bmt, using a half-matched brother as a donor (I could also have used my father or one of my older children). From what I have been told, Johns Hopkins was the first hospital to do this and I was number 28 or so (not for the tandem transplant, but the half-matched donor). I found the allo transplant way more pleasant than the auto. As a mini, it was less toxic and much easier on my overall well-being. In fact, the day of the transplant I gorged on steamed clams overlooking the Chesapeake Bay--a far cry from how I felt with the auto! My brother, the real hero of this story, was not feeling as well, however. But even he said he would do it again, and has signed up with the Registry--amazing! We have all been amazed at my "resurrection" since the allo 8 months ago, and at how much stronger I have become. I can easily take 6-mile walks and just spent four days at amusement parks in Orlando with the kids, even riding the extreme Hollywood Rip Ride Rocket several times!
Unlike Mark, I was not in a CR when I had the allo, although I was close because of the auto. My doctor has never used the term "high risk" with me, but I am assuming that she would, since I am the first patient she has ever taken such aggressive measures with (she rarely uses transplants as front-line therapy). I did get a second opinion, and that was to do tandem autos. We finally decided that was a lot of toxicity and tax on an immune system that had already been greatly compromised, and that the graft vs. myeloma effect was what was needed. We also struggled with whether to have a full allo using a full-matched unrelated donor, or the mini with a half-match. Since I was already at a hospital that had been having success with half matches (the mortality rate is lower, at about 15%), and since I had several half matches to choose from and time was of the essence for the tandem, we decided to go that route. I have finally reached CR this month (8 months out) for the first time, and have not been on any chemotherapy since September (just Zometa for my bones).
Best of luck with your decision. It is overwhelming and hard to know which way to turn. While I think it can be helpful to hear what others have done, it's a very personal decision.
Blessings and peace, Dana
I was very hesitant to have a transplant, but really didn't have much choice after 18 months of continuous treatment with all the available drugs. I needed to have an auto first, to lower the tumor burden as Mark described. Then I had a mini haplo bmt, using a half-matched brother as a donor (I could also have used my father or one of my older children). From what I have been told, Johns Hopkins was the first hospital to do this and I was number 28 or so (not for the tandem transplant, but the half-matched donor). I found the allo transplant way more pleasant than the auto. As a mini, it was less toxic and much easier on my overall well-being. In fact, the day of the transplant I gorged on steamed clams overlooking the Chesapeake Bay--a far cry from how I felt with the auto! My brother, the real hero of this story, was not feeling as well, however. But even he said he would do it again, and has signed up with the Registry--amazing! We have all been amazed at my "resurrection" since the allo 8 months ago, and at how much stronger I have become. I can easily take 6-mile walks and just spent four days at amusement parks in Orlando with the kids, even riding the extreme Hollywood Rip Ride Rocket several times!
Unlike Mark, I was not in a CR when I had the allo, although I was close because of the auto. My doctor has never used the term "high risk" with me, but I am assuming that she would, since I am the first patient she has ever taken such aggressive measures with (she rarely uses transplants as front-line therapy). I did get a second opinion, and that was to do tandem autos. We finally decided that was a lot of toxicity and tax on an immune system that had already been greatly compromised, and that the graft vs. myeloma effect was what was needed. We also struggled with whether to have a full allo using a full-matched unrelated donor, or the mini with a half-match. Since I was already at a hospital that had been having success with half matches (the mortality rate is lower, at about 15%), and since I had several half matches to choose from and time was of the essence for the tandem, we decided to go that route. I have finally reached CR this month (8 months out) for the first time, and have not been on any chemotherapy since September (just Zometa for my bones).
Best of luck with your decision. It is overwhelming and hard to know which way to turn. While I think it can be helpful to hear what others have done, it's a very personal decision.
Blessings and peace, Dana
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Dana - Name: Dana
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: 2009
- Age at diagnosis: 43
Re: Don't know what to do
I am probably going to go ahead with the transplant. I feel like I am trying to fulfill my bucket list. I've never been to calif, so I am going there for a few days and then to Hawaii .i want to spend some time with my grandchildren ( all nine ) this summer. The physician told me that he will not use strong chemo. It just seems as if I finally almost get back to normal and now here we go again.
I know that God is watching over me.
I know that God is watching over me.
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Music meme - Who do you know with myeloma?: Self
- When were you/they diagnosed?: Feb 2010
- Age at diagnosis: 53
Re: Don't know what to do
Dear Music Meme,
I felt the same way before my allo transplant--trying hard to squeeze in all the living I could! We went to Alaska in between the auto and allo, and it was wonderful for both the body and soul! But I have to say that the recovery from the allo seemed a lot easier and I felt more engaged in life afterward, possibly because I could see the end of the tunnel. You have a lot of living left to do--don't ever stop setting goals! And God certainly has many more plans for your life. He will carry you through this and you can still live abundantly in the process. We have not lost anything but the illusion of a longer life, which is all anybody has. There is a lot of living to do in every day, and we are just as alive today as everyone else! We have just been given the gift of perspective. I will keep you close in prayer. xoxo, Dana
I felt the same way before my allo transplant--trying hard to squeeze in all the living I could! We went to Alaska in between the auto and allo, and it was wonderful for both the body and soul! But I have to say that the recovery from the allo seemed a lot easier and I felt more engaged in life afterward, possibly because I could see the end of the tunnel. You have a lot of living left to do--don't ever stop setting goals! And God certainly has many more plans for your life. He will carry you through this and you can still live abundantly in the process. We have not lost anything but the illusion of a longer life, which is all anybody has. There is a lot of living to do in every day, and we are just as alive today as everyone else! We have just been given the gift of perspective. I will keep you close in prayer. xoxo, Dana
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Dana - Name: Dana
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: 2009
- Age at diagnosis: 43
Re: Don't know what to do
"We have not lost anything but the illusion of a longer life, which is all anybody has. There is a lot of living to do in every day, and we are just as alive today as everyone else! We have just been given the gift of perspective." - Very well said, Dana!
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Ben S.
Re: Don't know what to do
Thanks Dana for those words of encouragement. Yes we who have had the pleasure of having a physician tell you "you may have x amount of years left", tend to look at everyday and every situation differently and appreciate the life God has given us.
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Music meme - Who do you know with myeloma?: Self
- When were you/they diagnosed?: Feb 2010
- Age at diagnosis: 53
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