S.T. my experience was different from yours. l was into emergency twice both times sent out with pain pills. The first time by ambulance - and my hospital was not excepting ambulances so l got wearhoused for several hours in another hospitals ER (Providence) where l received absolutely no help and in fact was forced to hear the staff make salty remarks like -"we don't admit people for having bad backs "- ??? l was in to much pain to argue with these idiots.
The second trip l went in by car but had to be extracted from the passenger seat with a personell crane lift, they still did not figure it out - my wife finally took me to my GP, who was the first one to suspect l had multiple myeloma and ordered tests.
l then had a bone marrow extraction - and then was treated with thalodmide & dex for 10 months along with 4 months of morphine - which gave me the hebi jebies - pink spiders with legs the size of bananas.
That was almost 10 years ago and l'm doing ok, except l don't walk well any more. l'm ok around the house but no good on distances due to foot deformities and my back is good for only a few minutes standing then l need to sit down.
Kidneys are problematic but my last blood test showed some improvement - but also that my blood sugar is high ??? Other than that minor trivia, l'm doing great.
Best regards and good luck with your treatment,
N.G.
Forums
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Nipon Ginko - Name: Nipon Ginko
- Who do you know with myeloma?: ME
- When were you/they diagnosed?: 2004
- Age at diagnosis: 66
Re: My multiple myeloma curveball
Libby - It's a surreal wonder how a disease can be a binding commonality for folks to gather 'round. Sorta like comrades in battle I suppose, especially when non-sufferers often don't know how how to approach the subject. So yeah I already appreciate this site that I didn't expect.
As for my own bone recovery, I too, have been on the Zometa, but still been babying myself because A) I don't want to cause more injury to myself as you had, and B) because my wife would throw fits if I experienced A, and I fear B more than A.
Debit - That is terrific news of your state of remission. There ought to nothing said or written to diminish how wonderful that is!! My hope is to be able to say that as well, yet my positive attitude isn't hinging on it. Don't get me wrong, I am having some crap days, it's just that early in this tough journey I accepted the very stark outcome of death -- or as I have been terming it -- "standing at the dark precipice". I don't know, after I got comfortable with the prospect of checking out, I've been okay.
Nipon Ginko - You have had a very bumpy ride. Had that been us, I am certain we would not be doing as well. I can come off laissez faire with things, but I am not the most self-advocating and my wife would be making a kill list, so I give you props for getting through that, and not to mention fighting the good fight day after day for so long. Your username is interesting ... I took Nihongo in highschool (forgot almost all of it) ... and just closed my account at Chase
As for my own bone recovery, I too, have been on the Zometa, but still been babying myself because A) I don't want to cause more injury to myself as you had, and B) because my wife would throw fits if I experienced A, and I fear B more than A.
Debit - That is terrific news of your state of remission. There ought to nothing said or written to diminish how wonderful that is!! My hope is to be able to say that as well, yet my positive attitude isn't hinging on it. Don't get me wrong, I am having some crap days, it's just that early in this tough journey I accepted the very stark outcome of death -- or as I have been terming it -- "standing at the dark precipice". I don't know, after I got comfortable with the prospect of checking out, I've been okay.
Nipon Ginko - You have had a very bumpy ride. Had that been us, I am certain we would not be doing as well. I can come off laissez faire with things, but I am not the most self-advocating and my wife would be making a kill list, so I give you props for getting through that, and not to mention fighting the good fight day after day for so long. Your username is interesting ... I took Nihongo in highschool (forgot almost all of it) ... and just closed my account at Chase
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StandingTall - Who do you know with myeloma?: Me! yay!!
- When were you/they diagnosed?: Sept. 2013
- Age at diagnosis: 39
Re: My multiple myeloma curveball
Hi StandingTall. I am also a patient at SCCA, and can't say enough great things about the doctors and staff. Had an auto three years ago, which gave me a wonderful two and a half year drug free remission. Unfortunately its now time to do battle again, been on a trial since June, and now time to do another transplant. Looks like we are going to begin an auto/allo tandem here in the next month or so, so I've got that ahead of me.
If you do decide to proceed with a Stem Cell transplant, as much as I like all the staff, the folks upstairs on the sixth floor are top notch, for whatever thats worth.
For me, diagnosed with MGUS at age 45, 8 compression fractures in lower back about a year later (never said I was smart...), and willing to go through whatever is best to stick around to raise my kids.
As far as the ports, I really didn't mind them too much, the pic line was a piece of cake and to me not really that big a deal, but when I went through the Stem cell, I got what I believe is the standard Hickman line, a little more intrusive for me, but the biggest problem I had while I had the hickman was just not really getting to enjoy a shower. Trying to keep the thing dry and clean in the shower is a challenge. Other than that, for me, it was just something to deal with. Getting away from getting poked from all the blood tests and IV inserts is nice (I am commonly referred to as a "tough stick").
If you have any other questions, feel free to drop me a private line, happy to answer any questions you might have.
Best of luck in your battle, keep a good positive outlook. That seems to have helped me as much as anything.
Eric
If you do decide to proceed with a Stem Cell transplant, as much as I like all the staff, the folks upstairs on the sixth floor are top notch, for whatever thats worth.
For me, diagnosed with MGUS at age 45, 8 compression fractures in lower back about a year later (never said I was smart...), and willing to go through whatever is best to stick around to raise my kids.
As far as the ports, I really didn't mind them too much, the pic line was a piece of cake and to me not really that big a deal, but when I went through the Stem cell, I got what I believe is the standard Hickman line, a little more intrusive for me, but the biggest problem I had while I had the hickman was just not really getting to enjoy a shower. Trying to keep the thing dry and clean in the shower is a challenge. Other than that, for me, it was just something to deal with. Getting away from getting poked from all the blood tests and IV inserts is nice (I am commonly referred to as a "tough stick").
If you have any other questions, feel free to drop me a private line, happy to answer any questions you might have.
Best of luck in your battle, keep a good positive outlook. That seems to have helped me as much as anything.
Eric
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Eric T - Name: Eric T
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: June, 2009
- Age at diagnosis: 46
Re: My multiple myeloma curveball
Standing Tall-
Thank you for telling us your story about being diagnosed. Fortunately my story was very non-eventful. I was due to have shoulder surgery and my pre-surgical bloodwork came back abnormal. The doctor sent me back to my primary to have the testing redone to make sure that there hadn't been a mistake. It again came back abnormal. My primary only approved me to go on to surgery after I promised to see a hematologist/oncologist after I recovered and by the surgeon assuring my primary that they would take extra care in monitoring me for infections.
I was diagnosed as smoldering multiple myeloma and had no treatment for a year other than regular appointments with my multiple myeloma specialist every 6 weeks. Then I developed a pathologic fracture in my left humerus, fortunately not on the same side where I had the shoulder surgery. All of the testing done when my arm fractured showed that everything had progressed quickly and I now had bone lesions everywhere. I started treatment with Rev/Dex and Zometa infusions for my bones, followed by an autologous stem cell transplant 8 months later - timing by my choice. I went almost 3 years without any drugs other than Zometa for my bones. I'm currently back on Rev/Dex with really good results again.
You didn't say what your treatment is. I haven't had a port at any time. For the transplant I had a central line placed for the harvesting of the stem cells and for use during the transplant. I requested that it be removed before I was discharged from the hospital because it was too much of a tease for my cats who wanted to play with the 3 catheters that were hanging from my chest.
I went back to work full time 10 weeks after my transplant as a physical therapist. It was difficult at first since I was still really worn out from the transplant, but things slowly improved. My cognitive function and my energy returned to almost normal. I retired this Spring, because I turned 66 and have other things that I want to do other than work 40+ hours per week on someone else's schedule.
Things will get better as time and your blood levels improve. It is important to keep track of your test results and what is going on in Myelomaland as far as research, newly approved drugs, etc. Have conversations with you oncologist. This is a collaborative endeavor among you, your wife and your oncologist(s). You should be making treatment decisions collectively.
The best to you,
Nancy in Phila
Thank you for telling us your story about being diagnosed. Fortunately my story was very non-eventful. I was due to have shoulder surgery and my pre-surgical bloodwork came back abnormal. The doctor sent me back to my primary to have the testing redone to make sure that there hadn't been a mistake. It again came back abnormal. My primary only approved me to go on to surgery after I promised to see a hematologist/oncologist after I recovered and by the surgeon assuring my primary that they would take extra care in monitoring me for infections.
I was diagnosed as smoldering multiple myeloma and had no treatment for a year other than regular appointments with my multiple myeloma specialist every 6 weeks. Then I developed a pathologic fracture in my left humerus, fortunately not on the same side where I had the shoulder surgery. All of the testing done when my arm fractured showed that everything had progressed quickly and I now had bone lesions everywhere. I started treatment with Rev/Dex and Zometa infusions for my bones, followed by an autologous stem cell transplant 8 months later - timing by my choice. I went almost 3 years without any drugs other than Zometa for my bones. I'm currently back on Rev/Dex with really good results again.
You didn't say what your treatment is. I haven't had a port at any time. For the transplant I had a central line placed for the harvesting of the stem cells and for use during the transplant. I requested that it be removed before I was discharged from the hospital because it was too much of a tease for my cats who wanted to play with the 3 catheters that were hanging from my chest.
I went back to work full time 10 weeks after my transplant as a physical therapist. It was difficult at first since I was still really worn out from the transplant, but things slowly improved. My cognitive function and my energy returned to almost normal. I retired this Spring, because I turned 66 and have other things that I want to do other than work 40+ hours per week on someone else's schedule.
Things will get better as time and your blood levels improve. It is important to keep track of your test results and what is going on in Myelomaland as far as research, newly approved drugs, etc. Have conversations with you oncologist. This is a collaborative endeavor among you, your wife and your oncologist(s). You should be making treatment decisions collectively.
The best to you,
Nancy in Phila
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NStewart - Name: Nancy Stewart
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 3/08
- Age at diagnosis: 60
Re: My multiple myeloma curveball
Thanks Eric T. We consult next week and then probably get scheduled around late January...as my last appointment is Jan 17th for chemo here. But that's me thinking that it'll all go smoothly...so who knows...perhaps we'll run into each other! Sorry to hear that you are having to repeat the process...I only want to do it once (well actually not at all!) but I suppose that is why the oft repeat adage in these circles is taking it one day at a time. I may very well be hitting you up with questions.
NSTEWART...I'm getting Velcade injections and infusions of Cytoxan and Zometa. And then there's the good 'ol Dex oral tablets. Basically everything I am doing is according to how SCCA wants it done for my scenario. Doc wants to go for 6 cycles before shipping me off for transplant.
No port, but oncology nurses seem to prefer it, but doctor hasn't ordered it up..and frankly, I don't want one unless doc says otherwise. Yet with the material I received from Seattle Cancer Care Alliance...it sounds like it's the standard thing for the stem cell season ...getting a central line anyway...I guess that's not the same as a port? Anyhow, procedures where things are inserted and left to stick out don't sound ideal.
NSTEWART...I'm getting Velcade injections and infusions of Cytoxan and Zometa. And then there's the good 'ol Dex oral tablets. Basically everything I am doing is according to how SCCA wants it done for my scenario. Doc wants to go for 6 cycles before shipping me off for transplant.
No port, but oncology nurses seem to prefer it, but doctor hasn't ordered it up..and frankly, I don't want one unless doc says otherwise. Yet with the material I received from Seattle Cancer Care Alliance...it sounds like it's the standard thing for the stem cell season ...getting a central line anyway...I guess that's not the same as a port? Anyhow, procedures where things are inserted and left to stick out don't sound ideal.
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StandingTall - Who do you know with myeloma?: Me! yay!!
- When were you/they diagnosed?: Sept. 2013
- Age at diagnosis: 39
Re: My multiple myeloma curveball
Best of luck to you. I hope you are one of the long term survivors that I love to read about here. Stay strong!
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Spalmer - Name: Scott Palmer
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: 6/2013
- Age at diagnosis: 46
Re: My multiple myeloma curveball
Just got back from my SCT consultation. Basically wants to auto...take two month break...then come back for allo. Doc says my multiple myeloma case is aggressive...has those wonderful chromosomal mutations. Great setup at SCCA as far as I've seen. Long day.
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StandingTall - Who do you know with myeloma?: Me! yay!!
- When were you/they diagnosed?: Sept. 2013
- Age at diagnosis: 39
Re: My multiple myeloma curveball
Lots to do lots to do. I just don't have the time for multiple myeloma.
Got a call from Seattle Cancer Care Alliance...and they would like to schedule me to show up for my first appointment in one month. Tomorrow I talk to my doctor and see what he says...as well as my nephrologist. I was originally scheduled for 6 chemo cycles, but specialist thinks I'm ready now. Then I have to make sure I have a place to live in Seattle for two months+ 3months which I have to raise money for. Then I have to let Social Security know the first treatment date if I can get that information at this stage so I can get that settled...thank goodness I have a direct person that I have been working with.
Today I opened up a donation account at my bank...in anticipation for what we are going to do to raise attention to my need. Thankfully I have good insurance, but it doesn't cover lodging which will probably cost about 10k for the cumulative 5 month stay that is being anticipated. My out-of pocket has already maxed out, so the first auto SCT should be in the bag...but Jan. 1st it restarts so I have another out-of-pocket ceiling to hit which my second allo transplant will certainly attain
. Still this is a drop in the bucket compared to what my insurance is taking on but still it's more than I have. Luckily, I have some family who will be giving to help. I also have to work with my employer HR to figure out the COBRA...and get that underway when it's time.
On day at a time, folks!!!!
Got a call from Seattle Cancer Care Alliance...and they would like to schedule me to show up for my first appointment in one month. Tomorrow I talk to my doctor and see what he says...as well as my nephrologist. I was originally scheduled for 6 chemo cycles, but specialist thinks I'm ready now. Then I have to make sure I have a place to live in Seattle for two months+ 3months which I have to raise money for. Then I have to let Social Security know the first treatment date if I can get that information at this stage so I can get that settled...thank goodness I have a direct person that I have been working with.
Today I opened up a donation account at my bank...in anticipation for what we are going to do to raise attention to my need. Thankfully I have good insurance, but it doesn't cover lodging which will probably cost about 10k for the cumulative 5 month stay that is being anticipated. My out-of pocket has already maxed out, so the first auto SCT should be in the bag...but Jan. 1st it restarts so I have another out-of-pocket ceiling to hit which my second allo transplant will certainly attain
. Still this is a drop in the bucket compared to what my insurance is taking on but still it's more than I have. Luckily, I have some family who will be giving to help. I also have to work with my employer HR to figure out the COBRA...and get that underway when it's time.On day at a time, folks!!!!
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StandingTall - Who do you know with myeloma?: Me! yay!!
- When were you/they diagnosed?: Sept. 2013
- Age at diagnosis: 39
Re: My multiple myeloma curveball
You have a lot to manage right now. Here are some suggestions for seeking financial assistance and for lodging assistance:
1 Financial assistance - Leukemia and Lymphoma Society, up to $10,000 annually for people who qualify financially, income limit is relatively high; Chronic Disease fund, up to $10,000 annually for prescription assistance, income limit is relatively high; and there are others. Talk with the social worker at Seattle to get help with this and any other needs that you have.
2. Housing - contact the American Cancer Society to see if the have Hope Lodging in Seattle - I would bet they do. It is discounted lodging for people who are being treated for cancer. Again talk with the social worker in Seattle.
Managing all of the things that you have to do for treatment of cancer, and other chronic conditions, is such a time consuming endeavor. And, when you are making arrangements to be away from home for an extended period of time, it's worse. See if you can talk with other Myeloma survivors of both ASCT and allogeneic transplants who have been treated at Seattle to get suggestions of ways to manage your life for these treatments and what financial assistance they may have found.
Sending you all of the best as you begin this journey,
Nancy in Phila
1 Financial assistance - Leukemia and Lymphoma Society, up to $10,000 annually for people who qualify financially, income limit is relatively high; Chronic Disease fund, up to $10,000 annually for prescription assistance, income limit is relatively high; and there are others. Talk with the social worker at Seattle to get help with this and any other needs that you have.
2. Housing - contact the American Cancer Society to see if the have Hope Lodging in Seattle - I would bet they do. It is discounted lodging for people who are being treated for cancer. Again talk with the social worker in Seattle.
Managing all of the things that you have to do for treatment of cancer, and other chronic conditions, is such a time consuming endeavor. And, when you are making arrangements to be away from home for an extended period of time, it's worse. See if you can talk with other Myeloma survivors of both ASCT and allogeneic transplants who have been treated at Seattle to get suggestions of ways to manage your life for these treatments and what financial assistance they may have found.
Sending you all of the best as you begin this journey,
Nancy in Phila
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NStewart - Name: Nancy Stewart
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 3/08
- Age at diagnosis: 60
Re: My multiple myeloma curveball
Thanks Nancy,
I will look all of those resources up!!
I will look all of those resources up!!
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StandingTall - Who do you know with myeloma?: Me! yay!!
- When were you/they diagnosed?: Sept. 2013
- Age at diagnosis: 39
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