I'm all through with my stem cell collection and haven't had any Neupogen (filgrastim) shots for 4 days, yet I am in pain. I feel extremely tired and achy, and am struggling with severe neuropathy in hands, arms and feet.
As I mentioned in an earlier posting, I had pain right after the Neupogen injections, prior to my collection, and I took Claritin (loratadine) and Tylenol (acetaminophen / paracetamol), which worked great. But now I have these lingering side effects.
Has anyone else experienced this and, if so, when did it lift?
I also had high-dose Cytoxan (cyclophosphamide) for my stem cell mobilization. Could that be the cause of what I'm experiencing?
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Melpen - Name: Melissa
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: Feb 5, 2014
- Age at diagnosis: 57
Re: Lingering side effects of Neupogen for stem cell collect
Hi Melissa,
So sorry to hear of your suffering! But please be reassured that the side effects you are experiencing are not uncommon.
The aching is likely the result of the Neupogen and is usually associated with a robust stem cell collection, so hopefully you reaped that benefit. And yes, this effect can linger despite not receiving the Neupogen for some time. You should check with your doctor, first, but if Tylenol was helpful, it would be reasonable to continue to take it for the next few days. I expect that this symptom will resolve within a week.
The fatigue is likely multifactorial, with a significant contribution from Cytoxan (cyclophosphamide). This is unfortunate but also not uncommon, and is expected to resolve. If you are proceeding directly to transplant, there may not be much time with adequate energy in between. Yet, as much as it is a challenge, I encourage my patients to attempt to stay active (even incremental activity helps) throughout. Walking for some distance daily (0.5 - 1 mile) (1 - 2 km) is a good prescription in this regard.
Lastly, the neuropathy is likely related to your induction therapy, especially if bortezomib (Velcade) was utilized. Even if it first manifested during collection. Unfortunately, this can get worse before it gets better, even with no more chemo, and if it is severe, likely requires medical management. We often use vitamin supplements (vitamin B12, B6, alpha lipoic acid, glutamine, L-carnitine) to start, but more often patients who have severe symptoms require medicines like gabapentin (Neurontin) or pregabalin (Lyrica) for a period of time. The good news is that these medicines are effective in most patients, but the bad news is that this symptom takes longer to resolve (12 months or longer). I would recommend you discuss the neuropathy with your doctor since it will require some ongoing attention.
Hope this helps!
So sorry to hear of your suffering! But please be reassured that the side effects you are experiencing are not uncommon.
The aching is likely the result of the Neupogen and is usually associated with a robust stem cell collection, so hopefully you reaped that benefit. And yes, this effect can linger despite not receiving the Neupogen for some time. You should check with your doctor, first, but if Tylenol was helpful, it would be reasonable to continue to take it for the next few days. I expect that this symptom will resolve within a week.
The fatigue is likely multifactorial, with a significant contribution from Cytoxan (cyclophosphamide). This is unfortunate but also not uncommon, and is expected to resolve. If you are proceeding directly to transplant, there may not be much time with adequate energy in between. Yet, as much as it is a challenge, I encourage my patients to attempt to stay active (even incremental activity helps) throughout. Walking for some distance daily (0.5 - 1 mile) (1 - 2 km) is a good prescription in this regard.
Lastly, the neuropathy is likely related to your induction therapy, especially if bortezomib (Velcade) was utilized. Even if it first manifested during collection. Unfortunately, this can get worse before it gets better, even with no more chemo, and if it is severe, likely requires medical management. We often use vitamin supplements (vitamin B12, B6, alpha lipoic acid, glutamine, L-carnitine) to start, but more often patients who have severe symptoms require medicines like gabapentin (Neurontin) or pregabalin (Lyrica) for a period of time. The good news is that these medicines are effective in most patients, but the bad news is that this symptom takes longer to resolve (12 months or longer). I would recommend you discuss the neuropathy with your doctor since it will require some ongoing attention.
Hope this helps!
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Dr. Heather Landau - Name: Heather Landau, M.D.
Beacon Medical Advisor
Re: Lingering side effects of Neupogen for stem cell collect
I also had an increase in neuropathy symptoms after my stem cell harvesting. During collection, my feet felt like they were on fire, and my doctors upped my gabapentin dosage to 1,200 mg daily.
My thought has always been that I wanted to keep the dosage a low as possible because I'm already limited by my bone damage. I have difficulty walking and felt that increasing my dosage would affect the feeling in my legs. My brother, who has a different medical condition, takes 3,600 mg daily.
That level of dosage seems extreme to me. Am I wrong to feel this way?
Kully
My thought has always been that I wanted to keep the dosage a low as possible because I'm already limited by my bone damage. I have difficulty walking and felt that increasing my dosage would affect the feeling in my legs. My brother, who has a different medical condition, takes 3,600 mg daily.
That level of dosage seems extreme to me. Am I wrong to feel this way?
Kully
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kullybunnny1 - Name: Kully
- Who do you know with myeloma?: me
- When were you/they diagnosed?: August 2013
- Age at diagnosis: 48
Re: Lingering side effects of Neupogen for stem cell collect
I had an autologous stem cell transplant on October 20. After 7 courses of Velcade prior to the transplant, I experienced minor peripheral neuropathy in my feet. However, 7 days after the transplant, my neuropathy rapidly got to a point that I needed a walker to get around. Use of my right leg is completely gone, and I have about 70% use of my left leg.
My neurologist and my myeloma specialist do not think it is a manifestation of my myeloma; the consensus is I have developed a demyelating neuropathy due to an auto response of some kind. The sooner you treat neuropathy, the better. Don't ignore your neuropathy.
Wishing you the best.
My neurologist and my myeloma specialist do not think it is a manifestation of my myeloma; the consensus is I have developed a demyelating neuropathy due to an auto response of some kind. The sooner you treat neuropathy, the better. Don't ignore your neuropathy.
Wishing you the best.
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Dano - Who do you know with myeloma?: Me
- When were you/they diagnosed?: Jan 2014
- Age at diagnosis: 65
Re: Lingering side effects of Neupogen for stem cell collect
I agree Dano, addressing neuropathy is essential. And depending on the cause of the neuropathy, there are different ways to manage it. Indeed, it sounds like you have an autoimmune-related neuropathy affecting your strength, which would be expected to resolve in the next several weeks to months. In some settings, IVIG and/or plasmapharesis may help speed recovery.
On the otherhand, neuropathy due to chemotherapy is more often painful and can be manged with medicines such as gabapentin. We often escalate the dose with better control of the symptoms; and all patients do not respond to the same dose. Doses up to 3600 mg / day are safe. And in patients with other conditions such as seizure disorders, doses of 3600 mg / day are often necessary.
Kully, it makes good sense to use the lowest effective dose of a medication because in general at higher doses there may be more side effects. However, in the absence of side effects, increasing a medication dose to get the most benefit from it is also sensible.
Hope this helps!
On the otherhand, neuropathy due to chemotherapy is more often painful and can be manged with medicines such as gabapentin. We often escalate the dose with better control of the symptoms; and all patients do not respond to the same dose. Doses up to 3600 mg / day are safe. And in patients with other conditions such as seizure disorders, doses of 3600 mg / day are often necessary.
Kully, it makes good sense to use the lowest effective dose of a medication because in general at higher doses there may be more side effects. However, in the absence of side effects, increasing a medication dose to get the most benefit from it is also sensible.
Hope this helps!
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Dr. Heather Landau - Name: Heather Landau, M.D.
Beacon Medical Advisor
Re: Lingering side effects of Neupogen for stem cell collect
Thanks Dr Landau. I started IVIG infusions on Tuesday and I have one more on Friday. My neurologist and my multiple myeloma specialist both agree that IVIG therapy is the next step in treatment. High-dose steroids is also a consideration.
I'm currently on 1500 mg of gabapentin with no relief. According to the drug literature, 1800 mg / day is the maximum dose, but my neuropathy is so bad I plan to titrate my dose up. I didn't realize that you could use up to 3600 mg of gabapentin. My nerve pain is relentless and my muscle loss has changed my life completely. I'm hoping the IVIG therapy will be effective and I can get my life back.
I'm currently on 1500 mg of gabapentin with no relief. According to the drug literature, 1800 mg / day is the maximum dose, but my neuropathy is so bad I plan to titrate my dose up. I didn't realize that you could use up to 3600 mg of gabapentin. My nerve pain is relentless and my muscle loss has changed my life completely. I'm hoping the IVIG therapy will be effective and I can get my life back.
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Dano - Who do you know with myeloma?: Me
- When were you/they diagnosed?: Jan 2014
- Age at diagnosis: 65
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