Hi all, my name is Katherine and my husband Henry was diagnosed with multiple myeloma last July. Like many of you it was a total shock to us as he is a self-employed contractor/carpenter with a workaholic mentality. They guy never stopped working. He had to have a total hip replacement 4 years ago and besides that he was totally healthy and always on the go. He went in for his annual physical July and his blood workup came back with higher than normal levels of protein in his blood. His general practitioner knew this was not right and immediately sent him to see a hematologist/oncologist. She did a complete blood workup and the results showed smoldering myeloma. She said what we could do is just watchful waiting. We were told to come back in 3 months for a blood work again. Well because my husband was feeling well and continuing to work it was his decision to do what she suggested. I myself was skeptical and wanted him to get a second opinion but being the worker he is and how he felt and his wishes to listen to her, I agreed. WOW did things go south after those three months. He went back for blood work at the end of October and his protein in his blood was up from 8.5 to 9.5. Other things were ok and he still felt pretty good. She decided to do a bone marrow biopsy which was scheduled for Nov. and also a FISH study that was sent to Mayo Clinic in Rochester, MN. His bone marrow biopsy came back positive of multiple myeloma and do did the FISH study. Because we are from a very small community and do have the resources necessary, she said we needed to go see a specialist in another city. We agreed. We finally got an appointment scheduled for Dec. 26th. During this time my husband's health declined drastically. By the time we got to the appointment my husband was barely able to walk because his hemoglobin was down to 4.9 and his platelets were 10. The doctor immediately sent him to get a blood transfusion of 2 units and platelets. The next day they started a full round of chemo treatments and let us go home.
To make a long story short the next day his health declined so badly and he could not talk with being out of breath. They said to bring him to the hospital immediately. Took him there and medi-vacced him to the hospital where we are now doing our doctoring 2 hours away. He spent 18 days in the hospital, 4 of them in intensive care as he had a bleeding ulcer and other issues in his GI tract. Once that was fixed he started his first round of 96 hours of straight chemo therapy. Then while in the hospital he contracted MERSA, Influenza, and pneumonia. Almost didn't make it. He has had 4 rounds of the 96 hour chemo treatments. They collected his stem cells in May, they collected enough in one day for two transplants. He had his killing chemo on June 4 and then his transplant on June 6th. He handled this fairly well, the worst side effect was severe diarrhea and just very tired and exhausted. We are 34 days post stem cell transplant and the other day his hgb was down from 9.8 to 9.2 and his platelets were 63. All of his white counts are back to normal and so is neutrophil counts. What worries me is his rbc counts are all worse. I worry that the transplant did not take and I know it is early and his doctor doesn't seem to concerned about that. He is going to start him on infusions of Zometa and then Rev/Dex sometime this week. He has felt ok other than the fatigue and breathlessness and he continues to try to do as much around the house as possible. We do not have any children and I am his total caregiver. I am a teacher and very thankful I have the summer off and good insurance. I has spent many sleepless nights in tears and worrying about this and it has almost consumed my entire being as I am sure it has for many of you out there. I know this is long and apologize but I guess I just needed to vent as I really don't have anyone here who understands all that is going on. IF anyone can tell me how long after a stem cell transplant counts started going up instead of down and how they are doing I would greatly appreciate it and thank you for listening to me. Katherine
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vbjose - Name: vbjose
- Who do you know with myeloma?: husband
- When were you/they diagnosed?: July, 2012
- Age at diagnosis: 57
Re: Husband's Story
Hi Katherine, Thanks for sharing more of your story about you and your husband Henry. Sounds like you have been through a really rough year, since last July.
It's good that your are under such close medical supervision and I am sure you must be in good hands at the Mayo Clinic.
I saved my lab test results from my stem cell transplant back in Jan. 2009, but not the results for the first month after the transplant. i guess I was just too exhausted and distracted to care about record keeping at that time! But I notice that after a month my counts were quite good again. If they had not been, at any time, I would also have received blood transfusions to tide me over until the situation improved.
I had to push myself to get up and go for walks outdoors...my family and friends walked with me since I was very weak. But I did recover from that and after a lot of treatments, am back to living a normal life again.
Wishing you the best of luck with all of this. Take good care of yourselves!
It's good that your are under such close medical supervision and I am sure you must be in good hands at the Mayo Clinic.
I saved my lab test results from my stem cell transplant back in Jan. 2009, but not the results for the first month after the transplant. i guess I was just too exhausted and distracted to care about record keeping at that time! But I notice that after a month my counts were quite good again. If they had not been, at any time, I would also have received blood transfusions to tide me over until the situation improved.
I had to push myself to get up and go for walks outdoors...my family and friends walked with me since I was very weak. But I did recover from that and after a lot of treatments, am back to living a normal life again.
Wishing you the best of luck with all of this. Take good care of yourselves!
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Nancy Shamanna - Name: Nancy Shamanna
- Who do you know with myeloma?: Self and others too
- When were you/they diagnosed?: July 2009
Re: Husband's Story
Hi Nancy,
Thank you for the response. I know that if Henry's counts drop to low he will have transfusions as this has been the case more times than not. Since he was diagnosed and went from smoldering to stage 3 in a matter of 4 months, he has so many blood transfusions I have lost count. Like I said I know he is only a month out and I hope things start improving for him. He has been lucky in that he has not had a lot of bone involvement or kidney involvement. Even though his red counts are low he continues to do as much as possible. He is not one to just sit around and do nothing even when feeling so crappy. This morning he has already done the weed whipping around the trees and pond and along the drive way and he has blown the entire horseshoe driveway that was full of seeds and stuff left from the storm last night. But it is now break time as he is exhausted and a bit out of breath. Nancy, can you tell me how long it took before your counts were somewhat back to normal and when you started feeling good? When do they know if the transplant worked or not? I am so thankful for others to talk to on here as even though we have support here there really is no one who understands what he or I are going through. They see him out and about and think he is doing great but don't understand the weekly trips to the doctor or labs and the constant worry I have about this situation. I so worry about going back to school teaching in August and leaving him here alone but there is no option as it is my insurance we need as he was self employed and did not have insurance. I am also the girls volleyball coach at the high school and want to continue to coach this year but also know that he comes first in my life and if he is not well I will not do it, but it is a break for me, one that I haven't had since December, and it takes my mind off of all of this. I hope this makes sense to you. Anyway thank you for listening and being a sounding board for me. I wish you continued success as you also fight this terrible disease and best of luck to you.
Thank you for the response. I know that if Henry's counts drop to low he will have transfusions as this has been the case more times than not. Since he was diagnosed and went from smoldering to stage 3 in a matter of 4 months, he has so many blood transfusions I have lost count. Like I said I know he is only a month out and I hope things start improving for him. He has been lucky in that he has not had a lot of bone involvement or kidney involvement. Even though his red counts are low he continues to do as much as possible. He is not one to just sit around and do nothing even when feeling so crappy. This morning he has already done the weed whipping around the trees and pond and along the drive way and he has blown the entire horseshoe driveway that was full of seeds and stuff left from the storm last night. But it is now break time as he is exhausted and a bit out of breath. Nancy, can you tell me how long it took before your counts were somewhat back to normal and when you started feeling good? When do they know if the transplant worked or not? I am so thankful for others to talk to on here as even though we have support here there really is no one who understands what he or I are going through. They see him out and about and think he is doing great but don't understand the weekly trips to the doctor or labs and the constant worry I have about this situation. I so worry about going back to school teaching in August and leaving him here alone but there is no option as it is my insurance we need as he was self employed and did not have insurance. I am also the girls volleyball coach at the high school and want to continue to coach this year but also know that he comes first in my life and if he is not well I will not do it, but it is a break for me, one that I haven't had since December, and it takes my mind off of all of this. I hope this makes sense to you. Anyway thank you for listening and being a sounding board for me. I wish you continued success as you also fight this terrible disease and best of luck to you.
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vbjose - Name: vbjose
- Who do you know with myeloma?: husband
- When were you/they diagnosed?: July, 2012
- Age at diagnosis: 57
Re: Husband's Story
Hi Again...Katherine, I realized I made A typo..my ASCT was in Jan. 2010, not Jan. 2009. I have written extensively in the Beacon and hope I am not boring readers with my recollections, since I am a columnist here. The Beacon staff have helped me to edit my thoughts month by month, and that has been a wonderful experience too, for which I am very grateful.
But to answer your questions, I was really tired for at least a month. ..probably more. Since my transplant 'worked' in the sense of I survived it, and also my myeloma was still in a Very good partial response after it, I think now it must have been worthwhile doing it.
If you are wondering whether or not the transplant 'worked' in the sense of growing new cells, I think that you should look at the white blood cell counts, since white blood cells only live for 3-4 days in the bloodstream. My neutrophil count right after the transplant was way below normal levels, as my husband recalls. Then gradually the WBC started to come back up again, showing that the stem cells were producing new cells from the bone marrow. The red blood cells circulate for much longer, so a dip in those cells might indicate that the circulating red cells have died off, whereas the new red blood cells being produced and gradually replacing them are not quite enough yet to replace the old cells. Hope you can follow my thoughts on this. i am not a doctor though...I just became very interested in myeloma from the personal viewpoint. i was glad to find the Beacon too..it's a great source of information and feedback.
Sounds like your husband is very active! Maybe he should not over do it...it's difficult to find a balance in all of this, but I hope he does really well. There is no doubt that having all of these treatments is a big disruption in our lives, but then on the other hand, it's good that we now can hope to survive this cancer for many years.
Probably there are other readers here who are closer in time to the situation you are in right now who could give you some insights also!
But to answer your questions, I was really tired for at least a month. ..probably more. Since my transplant 'worked' in the sense of I survived it, and also my myeloma was still in a Very good partial response after it, I think now it must have been worthwhile doing it.
If you are wondering whether or not the transplant 'worked' in the sense of growing new cells, I think that you should look at the white blood cell counts, since white blood cells only live for 3-4 days in the bloodstream. My neutrophil count right after the transplant was way below normal levels, as my husband recalls. Then gradually the WBC started to come back up again, showing that the stem cells were producing new cells from the bone marrow. The red blood cells circulate for much longer, so a dip in those cells might indicate that the circulating red cells have died off, whereas the new red blood cells being produced and gradually replacing them are not quite enough yet to replace the old cells. Hope you can follow my thoughts on this. i am not a doctor though...I just became very interested in myeloma from the personal viewpoint. i was glad to find the Beacon too..it's a great source of information and feedback.
Sounds like your husband is very active! Maybe he should not over do it...it's difficult to find a balance in all of this, but I hope he does really well. There is no doubt that having all of these treatments is a big disruption in our lives, but then on the other hand, it's good that we now can hope to survive this cancer for many years.
Probably there are other readers here who are closer in time to the situation you are in right now who could give you some insights also!
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Nancy Shamanna - Name: Nancy Shamanna
- Who do you know with myeloma?: Self and others too
- When were you/they diagnosed?: July 2009
Re: Husband's Story
Hi Vbjose --
Wow! Your husband has had quite the ride. I'm glad he's past is SCT - hopefully things will start to settle down for him, and for you.
EJ has the same type of energy your husband has -- Always has to be busy, won't stop until the project's done, etc. I worry about his activity level, too. I constantly have to remind myself that life is for living, and although I'd be happier if he wouldn't push boundaries as much as he does, he wouldn't be. The night EJ got out of the hospital after his SCT, he took some of his cousins, who happened to be in town, on a tour of the monuments in DC. We didn't get home until after midnight! I thought for sure we'd be back at the hospital the next day, but it was fine.
RE: Blood tests. My understanding is that after a SCT all your blood counts can jump around for a while and it can take some time to fully recover. That's why they typically don't check your m-spike (or determine how successful the procedure was) until around Day 100. Although like most things myeloma, this isn't set in stone, either. EJ's m-spike continued to come down for another two months after Day 100.
It sounds like your husband had very intensive therapy before the SCT, in addition to the SCT, so I'm sure it is taking him his blood counts a bit longer to recover. The fact that he's up and about is a good thing! Like Nancy, EJ tried to walk a little bit everyday. He also used to go to the neighborhood basketball court and try to shoot baskets for a bit. He slowly got better, and was back at work within 6 -7 weeks. He's been working full time since then.
I know it is easier said than done, but be patient. You are doing all that you can, and your husband is lucky to have you.
Lyn
Wow! Your husband has had quite the ride. I'm glad he's past is SCT - hopefully things will start to settle down for him, and for you.
EJ has the same type of energy your husband has -- Always has to be busy, won't stop until the project's done, etc. I worry about his activity level, too. I constantly have to remind myself that life is for living, and although I'd be happier if he wouldn't push boundaries as much as he does, he wouldn't be. The night EJ got out of the hospital after his SCT, he took some of his cousins, who happened to be in town, on a tour of the monuments in DC. We didn't get home until after midnight! I thought for sure we'd be back at the hospital the next day, but it was fine.
RE: Blood tests. My understanding is that after a SCT all your blood counts can jump around for a while and it can take some time to fully recover. That's why they typically don't check your m-spike (or determine how successful the procedure was) until around Day 100. Although like most things myeloma, this isn't set in stone, either. EJ's m-spike continued to come down for another two months after Day 100.
It sounds like your husband had very intensive therapy before the SCT, in addition to the SCT, so I'm sure it is taking him his blood counts a bit longer to recover. The fact that he's up and about is a good thing! Like Nancy, EJ tried to walk a little bit everyday. He also used to go to the neighborhood basketball court and try to shoot baskets for a bit. He slowly got better, and was back at work within 6 -7 weeks. He's been working full time since then.
I know it is easier said than done, but be patient. You are doing all that you can, and your husband is lucky to have you.
Lyn
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Christa's Mom - Name: Christa's Mom
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: September, 2010
- Age at diagnosis: 53
Re: Husband's Story
Thank so much for your replies. I am greatly appreciative that you took time out of your schedule to write. My mind is put more at ease listening to your stories and knowing that there is this site that I can post to and get some answers. Again thanks and I will keep all posted as to Henry's progress and will stay in touch with how you are doing also.
Katherine
Katherine
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vbjose - Name: vbjose
- Who do you know with myeloma?: husband
- When were you/they diagnosed?: July, 2012
- Age at diagnosis: 57
Re: Husband's Story
I sound like your husband. I too like to work and enjoy doing a variety of projects. My wife constantly checks on me. If she's leaving for a weekend she makes the kids come by and check on me. Nobody wants me to die on their shift! Frankly I'd like things to go back to they way they were last year before I got diagnosed. But, I guess it will never be back to the way it was, we can only move forward.
To get to your point, I had my SCT on Jan. 21st of this year. Although I did not have any blood transfusions like your husband I have struggled with getting my blood counts back to normal even six months past transplant. My platelets came back rather quickly and my RBC bounced around for several months along with my WBC. My counts are still borderline which they tell me is a just a result of the body not fully recovered from the transplant. I wouldn't be too worried about the blood numbers just yet as mine bounced around for several months and the transplant docs seemed to have no worries.
Also, don't be surprised if the results of the transplant look less encouraging. My numbers seem to improve each month they test me so I think this transplant takes some time to show results. I'm now on maintenance therapy (Revlimid) and doing well.
I'm thinking of your husband, I know what he is going through. Its tough physically and mentally. And yes the caregiver can be in worse shape mentally than the patient. The love a good spouse is so important during these times. Good luck to you and your husband and keep us posted. Jerry.
To get to your point, I had my SCT on Jan. 21st of this year. Although I did not have any blood transfusions like your husband I have struggled with getting my blood counts back to normal even six months past transplant. My platelets came back rather quickly and my RBC bounced around for several months along with my WBC. My counts are still borderline which they tell me is a just a result of the body not fully recovered from the transplant. I wouldn't be too worried about the blood numbers just yet as mine bounced around for several months and the transplant docs seemed to have no worries.
Also, don't be surprised if the results of the transplant look less encouraging. My numbers seem to improve each month they test me so I think this transplant takes some time to show results. I'm now on maintenance therapy (Revlimid) and doing well.
I'm thinking of your husband, I know what he is going through. Its tough physically and mentally. And yes the caregiver can be in worse shape mentally than the patient. The love a good spouse is so important during these times. Good luck to you and your husband and keep us posted. Jerry.
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JBarnes - Name: Jerry Barnes
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: Aug 17, 2012
- Age at diagnosis: 54
Re: Husband's Story
I should add one thing. You think you are feeling good and attempt to work like you did before the diagnosis. I paid the price recently when I spent the day working on my barn. I got to the point that I got physically ill and unable to move due to sudden exhaustion. I spent two days on the couch with extreme fatigue. I learned my lesson that I can't do what I use to do and when I get a feeling of being tired I go inside and rest.
Of course my wife mentioned this to the oncologist which got me a stearn lecture. She's suppose to be on my side! Jerry.
Of course my wife mentioned this to the oncologist which got me a stearn lecture. She's suppose to be on my side! Jerry.
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JBarnes - Name: Jerry Barnes
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: Aug 17, 2012
- Age at diagnosis: 54
Re: Husband's Story
Dear vbjose,
I am so sorry to hear that your husband has had such a hard time of it. It sounds as though he got VDT-PACE, or something to that effect, for 4 cycles followed by his transplant. If that is the case, I am not at all surprised that the counts have not fully recovered. The hemoglobin change should be followed but a level of 9.2 would not be unexpected under the circumstances.
A platelet count of 10 at initial diagnosis is extremely low. As such, I suspect the burden of myeloma in the bone marrow was quite high at initial diagnosis. I would touch base with your husband's myeloma physician to determine when and if a repeat bone marrow biopsy is planned to re-stage his disease. I would be an advocate of that given the circumstances.
Hang in there!
Pete V.
I am so sorry to hear that your husband has had such a hard time of it. It sounds as though he got VDT-PACE, or something to that effect, for 4 cycles followed by his transplant. If that is the case, I am not at all surprised that the counts have not fully recovered. The hemoglobin change should be followed but a level of 9.2 would not be unexpected under the circumstances.
A platelet count of 10 at initial diagnosis is extremely low. As such, I suspect the burden of myeloma in the bone marrow was quite high at initial diagnosis. I would touch base with your husband's myeloma physician to determine when and if a repeat bone marrow biopsy is planned to re-stage his disease. I would be an advocate of that given the circumstances.
Hang in there!
Pete V.
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Dr. Peter Voorhees - Name: Peter Voorhees, M.D.
Beacon Medical Advisor
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