Good evening all,
I have gone through this forum a few times over the past few days. First, I want to say thank you for all of the information that is on here. I had so many questions and most have been answered.
My husband Mark was diagnosed in July. He was going to our primary doctor just for blood pressure checks. He was borderline high and the doctor wanted him on meds and he declined, stating he could just lose weight. While they went back and forth for months I would just check his blood pressure at home every so often. Then one day, no reason at all, I made an appointment for him to see the doctor to check pressure. It was normal. She noticed he did not have blood work done in 2 years. She did just regular stuff: CMP, CBC, lipids etc. Protein was high, so she investigated further. M-spike was 1485 mg/dL (1.485 g/dL, or 14.85 g/l). He had no symptoms at all. She referred us to a hematologist. There we got the diagnosis of multiple myeloma. Ever since then we have been non stop..
How and when to tell our 3 kids? How to tell his overprotective mom? Should we tell her? (She is diabetic on dialysis and drives us all crazy.) What to expect? Is this a death sentence? Etc etc etc.
When the doctor told us we were going to have to do the stem cell transplant, then we had no choice. I have a cousin who is a breast cancer survivor, so I had her come over and we picked her brain. I spoke with my boss who is a neurologist. We even consulted a naturalist.
We are in week 2 of our infusions of Velcade and Zometa. He is taking Revlimid orally. He has severe body aches. The 1st infusion went fine. The next day, the flu-like symptoms started. He also got unexplained and uncontrollable hiccups. Got a fever of 101.9 F (38.8 C). Then the body aches. He describes it as someone having a rod in his back and not able to bend.
Today during the infusion he felt hot. I asked a nurse to take his temp. It was 101 F (38.3 C). Doctor put him out of work. Now we are just waiting for the next 2 sessions of infusion, then bloodwork to see if numbers go down. then off to the transplant.
I know I wrote a lot. There is a lot. Thanks for reading.
Forums
8 posts
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chapmantall - Name: Shana
- Who do you know with myeloma?: husband
- When were you/they diagnosed?: 7/25/16
- Age at diagnosis: 51
Re: Husband diagnosed 2 months ago, getting treatment
Hi Chapmantall,
I am sorry about your husbands recent diagnosis. My husband was diagnosed last year at
the age of 50. I very much remember the whirlwind.
Is your husband getting an IV infusion of Velcade? Changing to a subcutaneous shot seems to be much better tolerated. Along with the Revlimid, is he also getting dexamethasone?
Are you seeing a myeloma specialist? Has your husband had a bone marrow biopsy? Did he have any of the "CRAB" symptoms at diagnosis:
C - Elevated calcium in blood
R - Renal (kidney) damage
A - Anemia (low hemoglobin)
B - Bone lesions / damage
Please know that there are different treatment philosophies for the disease. You may want to get a second opinion before you agree to subsequent treatment after induction.
My husband has flu-like symptoms after every Zometa infusion, but has never had a fever.
Good luck. Keep us updated.
Kerri
I am sorry about your husbands recent diagnosis. My husband was diagnosed last year at
the age of 50. I very much remember the whirlwind.
Is your husband getting an IV infusion of Velcade? Changing to a subcutaneous shot seems to be much better tolerated. Along with the Revlimid, is he also getting dexamethasone?
Are you seeing a myeloma specialist? Has your husband had a bone marrow biopsy? Did he have any of the "CRAB" symptoms at diagnosis:
C - Elevated calcium in blood
R - Renal (kidney) damage
A - Anemia (low hemoglobin)
B - Bone lesions / damage
Please know that there are different treatment philosophies for the disease. You may want to get a second opinion before you agree to subsequent treatment after induction.
My husband has flu-like symptoms after every Zometa infusion, but has never had a fever.
Good luck. Keep us updated.
Kerri
Re: Husband diagnosed 2 months ago, getting treatment
First, very sorry about your husband's diagnosis. I know it was a shock.
Second, it's very important to consult with a myeloma specialist, an oncologist who treats only - or majority - myeloma patients. Hematologists don't see many myeloma patients, and it's a complex enough disease that clinical experience and knowledge is vital in order to get the best care. That doesn't mean needing to change local care, but consultation as to the best approach which then is administered in concert with your local doc.
Some people have better results with longer Zometa infusion times. Typical is 20-30 minutes, but I've read a number of accounts of people who had issues with that infusion time, having little to no pain with a one-hour infusion. I'll be starting Zometa in a month, and they will be accommodating me with one-hour infusions.
Second, it's very important to consult with a myeloma specialist, an oncologist who treats only - or majority - myeloma patients. Hematologists don't see many myeloma patients, and it's a complex enough disease that clinical experience and knowledge is vital in order to get the best care. That doesn't mean needing to change local care, but consultation as to the best approach which then is administered in concert with your local doc.
Some people have better results with longer Zometa infusion times. Typical is 20-30 minutes, but I've read a number of accounts of people who had issues with that infusion time, having little to no pain with a one-hour infusion. I'll be starting Zometa in a month, and they will be accommodating me with one-hour infusions.
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moonscape - Who do you know with myeloma?: me
- When were you/they diagnosed?: 11/2015
Re: Husband diagnosed 2 months ago, getting treatment
My husband was diagnosed in December of 2015. He was treated with four cycles of cyclophosphamide, Velcade (bortezomib), and dexamethasone (CyBorD) and had a stem cell transplant the first of June. His kidneys were in bad shape at diagnosis and he had lesions on his lower spine and ribs. He was pretty sick. After his induction therapy, he achieved a stringent complete response (sCR), and his lab tests 90 days after his transplant showed complete remission (no myeloma detected anywhere), and his kidneys were back to normal as well.
He is doing 3 more months of consolidation chemo just to give it an extra kick in the butt, as his myeloma doc put it. LoL Then he will be on a Velcade injection every other week for maintenance.
You have found a great place for support and resources. My husband feels like his ole self again, maybe going to bed a little earlier, but pretty much getting on with his life again. Good luck to you and your husband.
He is doing 3 more months of consolidation chemo just to give it an extra kick in the butt, as his myeloma doc put it. LoL Then he will be on a Velcade injection every other week for maintenance.
You have found a great place for support and resources. My husband feels like his ole self again, maybe going to bed a little earlier, but pretty much getting on with his life again. Good luck to you and your husband.
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dogmom - Who do you know with myeloma?: husband
- When were you/they diagnosed?: December 2015
- Age at diagnosis: 58
Re: Husband diagnosed 2 months ago, getting treatment
Thanks for all the replies. My husband is getting Zometa, Velcade, and dexamethasone through infusions once a week. He is taking Revlimid 25 mg now every other day because of the side effects. He is continuing to get fever of 101 or 102 F almost every night. The energy he says is a 3. This is week 3, so we finish the first cycle of Revlimid this Friday. Then off one week. Hopefully he gets some energy on this off week. We then get blood work done next week. then the 2nd cycle of Revlimid, before going for stem cell replacement.
We did 3 opinions and all concur on the diagnosis. We are seeing a myeloma specialist. I work for a neurologist, so I 'report" to him every week with updates and get advice. What to ask, what to expect. He's called in a few favors to get us sooner appointments.
The oncologist says we are early. The M-spike was 3 times the normal range. He did talk to us about CRAB. Only thing is we have low hemoglobin today. It's just so much. He had a bone marrow biopsy. His number was 34%.
My only concern is he is getting the fever. The doctor says it's the Revlimid. Pain is manageable with Tylenol (acetaminophen, paracetamol), massage, and arnica cream. We are taking supplements because my husband is not a pill taker. We both are not sleeping well. Him because of pain, me because he can't sleep.
We did 3 opinions and all concur on the diagnosis. We are seeing a myeloma specialist. I work for a neurologist, so I 'report" to him every week with updates and get advice. What to ask, what to expect. He's called in a few favors to get us sooner appointments.
The oncologist says we are early. The M-spike was 3 times the normal range. He did talk to us about CRAB. Only thing is we have low hemoglobin today. It's just so much. He had a bone marrow biopsy. His number was 34%.
My only concern is he is getting the fever. The doctor says it's the Revlimid. Pain is manageable with Tylenol (acetaminophen, paracetamol), massage, and arnica cream. We are taking supplements because my husband is not a pill taker. We both are not sleeping well. Him because of pain, me because he can't sleep.
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chapmantall - Name: Shana
- Who do you know with myeloma?: husband
- When were you/they diagnosed?: 7/25/16
- Age at diagnosis: 51
Re: Husband diagnosed 2 months ago, getting treatment
Hang in there. It does get better. My husband had 70% plasma cells in his marrow and his kidneys were very compromised at diagnosis – creatinine was 5.0, and they start temporary dialysis at 6.0. His calcium was also very elevated.
After four months of induction therapy and an autologous stem cell transplant (ASCT), he is now myeloma free. The bone marrow is clean and all his labs are normal. Complete remission.
Good luck to you and your husband.
After four months of induction therapy and an autologous stem cell transplant (ASCT), he is now myeloma free. The bone marrow is clean and all his labs are normal. Complete remission.
Good luck to you and your husband.
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dogmom - Who do you know with myeloma?: husband
- When were you/they diagnosed?: December 2015
- Age at diagnosis: 58
Re: Husband diagnosed 2 months ago, getting treatment
Cathy,
Can you tell me how long was your husband in the hospital / motel during the transplant?
Did they use his own stem cells or donor cells? I think I remember reading getting 10 million cells. Not sure if it was his own or someone else's.
Were you able to see him? According to our doctor they will drop my husband's immune system to give him the replacement.
Is there a difference in a stem cell transplant and stem cell replacement? I keep reading on the forum transplant but the doctor is using the word replacement.
Can you tell me how long was your husband in the hospital / motel during the transplant?
Did they use his own stem cells or donor cells? I think I remember reading getting 10 million cells. Not sure if it was his own or someone else's.
Were you able to see him? According to our doctor they will drop my husband's immune system to give him the replacement.
Is there a difference in a stem cell transplant and stem cell replacement? I keep reading on the forum transplant but the doctor is using the word replacement.
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chapmantall - Name: Shana
- Who do you know with myeloma?: husband
- When were you/they diagnosed?: 7/25/16
- Age at diagnosis: 51
Re: Husband diagnosed 2 months ago, getting treatment
He received his own stem cells. They harvested enough for this transplant and froze enough for another should he ever need to have another transplant.
We were in the hospital and or motel for about 3 weeks, and yes, I was with him the entire time. I stayed with him in the hospital and at the motel. Our son came up on Father's Day and spent the day with him and I came home to touch base and get a few things but other than that we were together.
I am sure replacement and transplant are used in the same manner in this context. His was considered a combo in and outpatient transplant. Some places do totally inpatient and some do totally outpatient transplants.
We were in the hospital and or motel for about 3 weeks, and yes, I was with him the entire time. I stayed with him in the hospital and at the motel. Our son came up on Father's Day and spent the day with him and I came home to touch base and get a few things but other than that we were together.
I am sure replacement and transplant are used in the same manner in this context. His was considered a combo in and outpatient transplant. Some places do totally inpatient and some do totally outpatient transplants.
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dogmom - Who do you know with myeloma?: husband
- When were you/they diagnosed?: December 2015
- Age at diagnosis: 58
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