Hi, I have recently been newly diagnosed in May 2012 and currently in a smoldering state and hope to be in this state for many years.
The specialist report that I have may have had this condition in my blood for some time. I am a 48 year old caucasian male, pretty active and completed my kng fu 1st degree black belt grdaing in December 2011 along with my now 19 year old son (9+ hour ordeal) that involved being very fit, and I also train in Tai Chi. This was naturally quite a shock for me and has been quite an emotional period. It may seem strange but I have not cried so much in such a short time. WOW. My family remind me that I am alive and I am focussing on the future.
On 7 Feb 2004 I had a stroke at 39 and related to stress, that I fully recovered from and have hoped to speak publicly about this and encourage others. The strike was due to a combination of working long hours in a stressful job, the situation in South Africa and had also completed two degree, including an MBA part time in this time. This finally caused us to re-evaluate our life and migrated from SA to New Zealand in 2005. I fully recovered and am a fighter through and through.
This will be my biggest battle in life. My family and I are also Christians so together we will have to be strong in this journey ahead. I have been married for over 26 years and also we also have a 22 year old daughter.
I have herididitory cholestral and Factor V Leiden, a blood disorder that can cause clotting and I take medication for these two.
Regards
Gavin
Forums
6 posts
• Page 1 of 1
Re: Newly diagnosed
Welcome to the forum.
I am smoldering as well and was diagnosed in August.
I am smoldering as well and was diagnosed in August.
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mrsv118 - Name: Kate
- Who do you know with myeloma?: ME
- When were you/they diagnosed?: 7/19/12
- Age at diagnosis: 48
Re: Newly diagnosed
Gavin,
My husband was diagnosed in 2010. Our faith in our Lord and Savior Jesus Christ is what has carried us through. Stay strong.
Praying with you for a cure!
My husband was diagnosed in 2010. Our faith in our Lord and Savior Jesus Christ is what has carried us through. Stay strong.
Praying with you for a cure!
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Marie64 - Name: Marie
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: 2010
- Age at diagnosis: 45
Re: Newly diagnosed
Gavinwn
Sorry to hear of your diagnosis. I was Dx'd with SMM in December 2011 at the age of 40. I understand what you are going through. But please try to remember that you have SMM and technically that is a precursor to Cancer and Not active disease. This took me quite some time to realize and I did so on my own. I wish someone would have told me this. Hang in there and stay strong it will get better.
Gods Blessings
Art
Sorry to hear of your diagnosis. I was Dx'd with SMM in December 2011 at the age of 40. I understand what you are going through. But please try to remember that you have SMM and technically that is a precursor to Cancer and Not active disease. This took me quite some time to realize and I did so on my own. I wish someone would have told me this. Hang in there and stay strong it will get better.
Gods Blessings
Art
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Art - Name: Art
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: 12/2011
- Age at diagnosis: 40
Re: Newly diagnosed
Hello Gavin,
I ,too, want to say "hang in there". My introduction to multiple myeloma began in July, 2009 when I fell over on my right arm while trying to get out of bed. ER doctors called it a damaged rotary cuff and put me in splint, then sent me to an orthopedic Dr. who suspected something else. Turned out that there was a malignant tumor sitting on my shoulder blade. No idea how long it had been there and there had been absolutely no pain!!! Called it plasmacytoma. Anyway, I underwent 30 radiation treatments to shrink the tumor and went into remission.
DR. said if it came back, it would most likely be ""years down the road.""" Well, August 14,2012, I had a bone survey done per request of my oncologist. Results indicated that cancer is back in my left hip area and right upper arm. Devastation is a light description to size up how I feel right now. What is even more weird is that there was no pain in my body UNTIL I had the bone test done. I have cried and prayed and prayed and cried. I have lost almost 10 pounds since the day I was told, can't sleep, can't focus. As I write this, I have been up and down all night reading about multiple myeloma and thinking. I have been searching for a forum where I can speak to others who are going through or have gone through. I finally found this site at 5:00 A.M. central standard time and breathed a sigh of relief. It helps to talk to people.
My DR. says I have to start chemo because multiple myeloma is no longer confined to one area. I am soooooooo scared !!! I have seen what chemo has done to others some of them in my family. I am to start lots of other tests in the upcoming weeks and see the radiation DR. next week to see about treating the most critical area in my left leg(the long weight, bearing pelvic bone.My DR. is afraid of fracture or breakage.) I am stretching out on my faith in God for healing. I know that my God honors His word, and He will not forsake those who put their trust in Him. Let us pray for each other, and pray that God will guide the doctors in their treatments for us.
Betty
I ,too, want to say "hang in there". My introduction to multiple myeloma began in July, 2009 when I fell over on my right arm while trying to get out of bed. ER doctors called it a damaged rotary cuff and put me in splint, then sent me to an orthopedic Dr. who suspected something else. Turned out that there was a malignant tumor sitting on my shoulder blade. No idea how long it had been there and there had been absolutely no pain!!! Called it plasmacytoma. Anyway, I underwent 30 radiation treatments to shrink the tumor and went into remission.
DR. said if it came back, it would most likely be ""years down the road.""" Well, August 14,2012, I had a bone survey done per request of my oncologist. Results indicated that cancer is back in my left hip area and right upper arm. Devastation is a light description to size up how I feel right now. What is even more weird is that there was no pain in my body UNTIL I had the bone test done. I have cried and prayed and prayed and cried. I have lost almost 10 pounds since the day I was told, can't sleep, can't focus. As I write this, I have been up and down all night reading about multiple myeloma and thinking. I have been searching for a forum where I can speak to others who are going through or have gone through. I finally found this site at 5:00 A.M. central standard time and breathed a sigh of relief. It helps to talk to people.
My DR. says I have to start chemo because multiple myeloma is no longer confined to one area. I am soooooooo scared !!! I have seen what chemo has done to others some of them in my family. I am to start lots of other tests in the upcoming weeks and see the radiation DR. next week to see about treating the most critical area in my left leg(the long weight, bearing pelvic bone.My DR. is afraid of fracture or breakage.) I am stretching out on my faith in God for healing. I know that my God honors His word, and He will not forsake those who put their trust in Him. Let us pray for each other, and pray that God will guide the doctors in their treatments for us.
Betty
Re: Newly diagnosed
Hello Gavinwn and others --
I am new to this forum as well. I was diagnosed in February 2001 with MGUS. At the time I was so frightened at the initial diagnosis, being told that it was a precursor to multiple myeloma. They put me through all kinds of tests, BMB, etc. and everything seemed to be okay. Each time I had to go to the doctor's it was a very scary experience wondering and waiting thinking, "Is this going to be the time that they tell me I have multiple myeloma?" This went on for many years until December 2010. I had experienced some back pain earlier in the year and was told it was muscle strain, etc. and was sent for PT. I had a feeling this was "NOT" muscle pain. Anyway, I continued to feel better and even was able to join my dragon boat team for the season and competed in two races that year. When November 2010 came, I started feeling "That" pain again and was given muscle relaxants. It started to get better. but on December 21, it came back with a vengence. At this point I was having trouble walking. I went to the doctor and she sent me for an MRI. The MRI showed some compression, but it didn't give the full picture of the thoracic spine. I remember that on Christmas day, I wasn't able to get out of bed on my own. My husband helped me and as soon as I stood up I thought I would pass out from the pain. I couldn't breathe. This was the worst pain I had ever felt in my life and I was scared. I went to the ER and was put on morphine and more muscle relaxants. I was told to see my own doctor on Monday. My doctor sent me for another MRI and this MRI showed a compression fracture of the T10. I was in shock. They immediately sent me to a back surgeon, who set me up for a bone biopsy and also a vertebroplasty. I had the bone biopsy and was supposed to have the vertebroplasty immediately after, but was told that I couldn't have the vertebroplasty because there was pathology. OK now what. Luckily for me I had been seeing a hemotolgist/oncologist for the MGUS and was seen right away. They sent be for a bone marrow biopsy and the results of that showed a slight increase in plasma cells in the BM and confirmed the diagnosis of smoldering myeloma with a plasmacytoma of the T10. At my visit with my oncologist I was told to get a second opionion with a back surgeon and he recommended no treatment at this time. I couldn't believe my ears -- no treatment, with a plasmacytoma! Luckily my husband did some research and found a wonderful doctor at Mass General in Boston. This doctor was a spine surgeon specializing in tumors of the spine. Longer story shorter I hope, the spine surgeon recommended radiation of the T10 to shrink the tumor and referred me to a colleague of his that was an oncologist with the BMT team. The new oncologist was also the assistant director. He recommended radiation of the tumor followed by 4 - 6 cycles of chemotherapy. That was May of 2012. Luckily my doctor in Boston was able to convince my doctor in CT that I should have the treatment. This greatly assisted me with my decision, as Boston is ~ 1-1/2 hours away from where I live. I had 12 radiation treatments followed by 6 cycles of chemotherapy consisting of Revlimid, Velcade and Dexamethesone. As you can imagine and as many of you know from personal experience, that the Velcade and dexamethesone was very hard on my body. My blood pressure became elevated to the point that I had to be put on blood pressure medicine as well as elevated my blood glucose. The velcaade caused severe peripherial neuropathy. In August of 2011, I stopped the chemotherapy in preparation to undergo a SCT in November. The induction for the SCT started in October. I was also able to have a procedure to cement my spine in February 2012 called kyphoplasty; what a world of difference that made. I'm doing well now, after being put on maintenance chemo with Revlimid in May 2012. I have some GI issues and my platelets are hovering just under 20,000. They want your platelets to be stable in the 20,000 to 50,000 range. It took me quite a while before I was strong enough to return to work and now I can only put in a 6 hour day. I just started bowling again. My husband and I are able to golf every weekend as long as we use a cart. I am thankful that I am able to do these things. The whole process has been quite scary and much of it has been a blur. I also experienced what they thought was PST due to all of the events that happened so quickly. I think being diagnosed with MGUS in 1999 did mentally prepare me for this diagnosis. I think we can get through anything if we have to. Considering the alternative, I think I would do it again. The SCT that is. They did collect enough stem cells for a second transplant and I do hope that it won't be necessary.
In closing, I just wanted to say, make sure you do your research. As scary as it is, try to process what you are going through and keep everything in perspective. They are coming out with new treatments all the time. Unfortunately, the way I look at it, there is always someone out there that may be worse off than I am, so I am thankful for what I have for as long as I have it.
Good luck to you and all the others.
I am new to this forum as well. I was diagnosed in February 2001 with MGUS. At the time I was so frightened at the initial diagnosis, being told that it was a precursor to multiple myeloma. They put me through all kinds of tests, BMB, etc. and everything seemed to be okay. Each time I had to go to the doctor's it was a very scary experience wondering and waiting thinking, "Is this going to be the time that they tell me I have multiple myeloma?" This went on for many years until December 2010. I had experienced some back pain earlier in the year and was told it was muscle strain, etc. and was sent for PT. I had a feeling this was "NOT" muscle pain. Anyway, I continued to feel better and even was able to join my dragon boat team for the season and competed in two races that year. When November 2010 came, I started feeling "That" pain again and was given muscle relaxants. It started to get better. but on December 21, it came back with a vengence. At this point I was having trouble walking. I went to the doctor and she sent me for an MRI. The MRI showed some compression, but it didn't give the full picture of the thoracic spine. I remember that on Christmas day, I wasn't able to get out of bed on my own. My husband helped me and as soon as I stood up I thought I would pass out from the pain. I couldn't breathe. This was the worst pain I had ever felt in my life and I was scared. I went to the ER and was put on morphine and more muscle relaxants. I was told to see my own doctor on Monday. My doctor sent me for another MRI and this MRI showed a compression fracture of the T10. I was in shock. They immediately sent me to a back surgeon, who set me up for a bone biopsy and also a vertebroplasty. I had the bone biopsy and was supposed to have the vertebroplasty immediately after, but was told that I couldn't have the vertebroplasty because there was pathology. OK now what. Luckily for me I had been seeing a hemotolgist/oncologist for the MGUS and was seen right away. They sent be for a bone marrow biopsy and the results of that showed a slight increase in plasma cells in the BM and confirmed the diagnosis of smoldering myeloma with a plasmacytoma of the T10. At my visit with my oncologist I was told to get a second opionion with a back surgeon and he recommended no treatment at this time. I couldn't believe my ears -- no treatment, with a plasmacytoma! Luckily my husband did some research and found a wonderful doctor at Mass General in Boston. This doctor was a spine surgeon specializing in tumors of the spine. Longer story shorter I hope, the spine surgeon recommended radiation of the T10 to shrink the tumor and referred me to a colleague of his that was an oncologist with the BMT team. The new oncologist was also the assistant director. He recommended radiation of the tumor followed by 4 - 6 cycles of chemotherapy. That was May of 2012. Luckily my doctor in Boston was able to convince my doctor in CT that I should have the treatment. This greatly assisted me with my decision, as Boston is ~ 1-1/2 hours away from where I live. I had 12 radiation treatments followed by 6 cycles of chemotherapy consisting of Revlimid, Velcade and Dexamethesone. As you can imagine and as many of you know from personal experience, that the Velcade and dexamethesone was very hard on my body. My blood pressure became elevated to the point that I had to be put on blood pressure medicine as well as elevated my blood glucose. The velcaade caused severe peripherial neuropathy. In August of 2011, I stopped the chemotherapy in preparation to undergo a SCT in November. The induction for the SCT started in October. I was also able to have a procedure to cement my spine in February 2012 called kyphoplasty; what a world of difference that made. I'm doing well now, after being put on maintenance chemo with Revlimid in May 2012. I have some GI issues and my platelets are hovering just under 20,000. They want your platelets to be stable in the 20,000 to 50,000 range. It took me quite a while before I was strong enough to return to work and now I can only put in a 6 hour day. I just started bowling again. My husband and I are able to golf every weekend as long as we use a cart. I am thankful that I am able to do these things. The whole process has been quite scary and much of it has been a blur. I also experienced what they thought was PST due to all of the events that happened so quickly. I think being diagnosed with MGUS in 1999 did mentally prepare me for this diagnosis. I think we can get through anything if we have to. Considering the alternative, I think I would do it again. The SCT that is. They did collect enough stem cells for a second transplant and I do hope that it won't be necessary.
In closing, I just wanted to say, make sure you do your research. As scary as it is, try to process what you are going through and keep everything in perspective. They are coming out with new treatments all the time. Unfortunately, the way I look at it, there is always someone out there that may be worse off than I am, so I am thankful for what I have for as long as I have it.
Good luck to you and all the others.
-
LisaG
6 posts
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