Some background info:
My brother-in-law was diagnosed with multiple myeloma in 2010. He hit remission in 2013.
He relapsed last year (M-band at 2.81 and kappa-lambda ratio at 100), and the symptoms started coming back. He had pain in his leg and fever. Then we started medication again (Velcade, Revlimid, and dexamethasone). the M-band came down to 0.75 (with kappa-lambda ratio at 2.6) by February 2017.
Then in March 2017 he started having severe visual distortion due to the medication. So we stopped medication for a few months and then the M-band spiked up to 2.16 (and kappa-labmda = 294) in May 2017. He also developed neoplasms on the left lower back.
Then we started treatment in June with Velcade, Pomalyst 4 mg, and dex. In July the M-band came down to 1.16 and kappa-lambda ratio 79.8. So we reduced the Pomalyst dosage to 2 mg.
Three weeks ago, the hemoglobin started falling. Now the hemoglobin is at 7.2. Was 7.7 last week.
Pain due to the neoplasms has been unbearable except when he takes dex. He has also lost considerable amount of weight and is very weak.
I am hoping to get guidance on what we can do to increase the hemoglobin levels.
Some more info on hemoglobin. The ferritin is very high at 2172, the B12 and other iron levels seem to be within range. 3 injections to increase the hemoglobin called Cresp (darbepoetin alfa, Aranesp) have been given in the last three weeks, in spite of which the hemoglobin continues to fall.
Any insight on whats going on? What should we do, or not do? Happy to answer any further questions.
Thanks a lot. God bless. Mo
Forums
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mo love - Name: Mo Love
- Who do you know with myeloma?: A family member
- When were you/they diagnosed?: 2010
- Age at diagnosis: 43
Re: Hemoglobin low during treatment: how to increase it?
Hi Mo,
As I understand it, it can take a few weeks to see improvements from erythropoietin therapy (Cresp, etc) - so I wouldn't give up hope just yet. Has your doctor discussed the possibility of blood transfusions in the interim or in case the erythropoietin doesn't work for him?
As I understand it, it can take a few weeks to see improvements from erythropoietin therapy (Cresp, etc) - so I wouldn't give up hope just yet. Has your doctor discussed the possibility of blood transfusions in the interim or in case the erythropoietin doesn't work for him?
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Hemoglobin low during treatment: how to increase it?
Topical testosterone can help raise hemoglobin levels. My husband started 4 months ago and we're seeing an uptick the past 2 months in his RBC, hematocrit, and hemoglobin. Not worldshaking increases, but it's the first time since he started back on treatment that he isn't going down a bit each month.
He's got more energy (yes, let's call it energy)
, as well, which isn't bothering me one bit!
He's got more energy (yes, let's call it energy)
, as well, which isn't bothering me one bit!-
LisaE - Name: Lisa
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: April 2014
- Age at diagnosis: 67
Re: Hemoglobin low during treatment: how to increase it?
Hello,
This is a topic that also interests me.
I was diagnosed with multiple myeloma in mid August , I just had my second Velcade shot and yesterday I started Revlimid. I'm also receiving dexamethasone when I go for the Velcade. They give me the dex right before the Velcade infusion. I'm also taking aspirin to prevent clots and acyclovir to prevent infections.
I have learned a lot from this forum and I want to thank everyone for sharing. I was wondering if anybody has a diet plan or any advice to me that would help to raise or keep my hemoglobin numbers up. My hemoglobin was 9 when I did my first Velcade shot. The second time it was at 8.6. I did change my diet slightly by adding more vegetables last week, thinking it would help, but it didn't. All levels were down. I cut out coffee last week also.
Any help would be greatly appreciated. I am a 51-year-old male. I'm very athletic and normally I would do a 10k or 5k just about every weekend. I haven't done any running or exercise since my diagnosis.
This is a topic that also interests me.
I was diagnosed with multiple myeloma in mid August , I just had my second Velcade shot and yesterday I started Revlimid. I'm also receiving dexamethasone when I go for the Velcade. They give me the dex right before the Velcade infusion. I'm also taking aspirin to prevent clots and acyclovir to prevent infections.
I have learned a lot from this forum and I want to thank everyone for sharing. I was wondering if anybody has a diet plan or any advice to me that would help to raise or keep my hemoglobin numbers up. My hemoglobin was 9 when I did my first Velcade shot. The second time it was at 8.6. I did change my diet slightly by adding more vegetables last week, thinking it would help, but it didn't. All levels were down. I cut out coffee last week also.
Any help would be greatly appreciated. I am a 51-year-old male. I'm very athletic and normally I would do a 10k or 5k just about every weekend. I haven't done any running or exercise since my diagnosis.
Re: Hemoglobin low during treatment: how to increase it?
Cellmanplan,
If your anemia can be improved by increasing your iron intake, you may want to read this thread:
"Counteracting anemia" (started July 22, 2014)
Eating a ton of iron-rich vegetables on a daily basis didn't really do anything to help my hemoglobin level. But taking an iron supplement and eating red meat did have an impact.
But keep in mind that I'm smoldering and not on any treatment, so your situation is quite a bit different from mine. As always, please check with you oncologist before taking any supplements, especially since you are undergoing treatment.
If your anemia can be improved by increasing your iron intake, you may want to read this thread:
"Counteracting anemia" (started July 22, 2014)
Eating a ton of iron-rich vegetables on a daily basis didn't really do anything to help my hemoglobin level. But taking an iron supplement and eating red meat did have an impact.
But keep in mind that I'm smoldering and not on any treatment, so your situation is quite a bit different from mine. As always, please check with you oncologist before taking any supplements, especially since you are undergoing treatment.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Hemoglobin low during treatment: how to increase it?
Hello Cellmanplan,
I was diagnosed in November of 2016 and went on 5 1/2 months of induction therapy of CyBorD (cyclophosphamide, Velcade and dexamethasone) followed by an autologous stem cell transplant in June of this year. I am presently at day +97.
Like you I ran a lot before I was diagnosed. In fact, I have completed 22 marathons. The shock of the diagnosis coupled with lytic lesions of the spine and ribs curtailed my physical activity. I walked a lot during my induction and eventually tried a bit of running, even some biking. I seemed to have less energy back then. However, now I am very active again and am running about 5 to 8 km for 3 to 4 days a week and riding my bike about 20 km at a similar frequency. I am very pleased to have this much energy again and I hope it lasts. Perhaps I may even be able to run a marathon again. Scheduled to go on maintenance therapy with Revlimid next month, so will see.
Looking back, I believe I could have pushed myself a little harder soon after my diagnosis. My mind prevented that as much as my fatigue and pain. I stayed as active as I could during the stem cell transplant by daily walking as an outpatient, and I believe that fitness was very important in aiding my recovery.
I guess my message to you is to not be too quick to abandon activities you love, such as running.
I was diagnosed in November of 2016 and went on 5 1/2 months of induction therapy of CyBorD (cyclophosphamide, Velcade and dexamethasone) followed by an autologous stem cell transplant in June of this year. I am presently at day +97.
Like you I ran a lot before I was diagnosed. In fact, I have completed 22 marathons. The shock of the diagnosis coupled with lytic lesions of the spine and ribs curtailed my physical activity. I walked a lot during my induction and eventually tried a bit of running, even some biking. I seemed to have less energy back then. However, now I am very active again and am running about 5 to 8 km for 3 to 4 days a week and riding my bike about 20 km at a similar frequency. I am very pleased to have this much energy again and I hope it lasts. Perhaps I may even be able to run a marathon again. Scheduled to go on maintenance therapy with Revlimid next month, so will see.
Looking back, I believe I could have pushed myself a little harder soon after my diagnosis. My mind prevented that as much as my fatigue and pain. I stayed as active as I could during the stem cell transplant by daily walking as an outpatient, and I believe that fitness was very important in aiding my recovery.
I guess my message to you is to not be too quick to abandon activities you love, such as running.
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Colin - Name: Colin Rice
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: November 2016
- Age at diagnosis: 60
Re: Hemoglobin low during treatment: how to increase it?
Slightly off-topic to your question, but has your doctor discussed at what level he or she would recommend suspending treatment or considering a transfusion? I am not a doctor, but in untreated patients it is my understanding that transfusion is considered for cases where the hemoglobin is under 7 and not above 10, but the areas between 7 and 10 depends on the circumstances.
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goldmine848 - Name: Andrew
- When were you/they diagnosed?: June 2013
- Age at diagnosis: 60
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