Hi Everyone.
I am a caregiver to my husband who was diagnosed with multiple myeloma last March at 48 years old. He has been treated with RVD [Revlimid, Velcade, and dex] and has had an excellent partial response. His doctor at Stanford has said that his is a good candidate for an auto transplant.
On Saturday, he received Cytoxan (cyclophosphamide) and Zofran (ondansetron) for nausea and we are currently administering Neupogen (filgrastim) at home. My husband is concerned because he has had a headache most of the time since Saturday. We took him off the Zofran, substituting Compazine (prochlorperazine) and Ativan (lorazepam), and he seems to be doing better.
We were curious if others had a difficult time with the prep and harvest? What challenges did you face during the process?
Our doctor said that the harvest was easier than the transplant and that has us a little worried, because he's been struggling already.
Thank you for your help.
Forums
Re: Side effects during SCT prep and collection
Hi chefsgirl,
Sorry to hear about the problems your husband is having with the preparations for his stem cell transplant. I hope the worst of it is over.
Up until recently, I had the impression that it's usually the Neupogen injections that cause people problems during the preparation for stem cell harvesting. The injections can lead to pain in the bones that some people have found REALLY painful. Just do a search on "Neupogen" from the forum search box and you'll see a number of forum discussions on the subject, including tips related to medications that can really help get rid of the bone pain -- for example, Tylenol (acetaminophen / paracetamol) and Claritin (loratadine).
There was, however, a discussion recently where it was pointed out that the Cytoxan used for mobilization also can cause problems. You may want to read through it:
"Lingering side effects of Neupogen for stem cell collection," forum disc. started Dec 26, 2014.
I'd also recommend you check out goldmine848's detailed "Complete guide to stem cell collection," if you haven't seen it already.
Good luck!
Sorry to hear about the problems your husband is having with the preparations for his stem cell transplant. I hope the worst of it is over.
Up until recently, I had the impression that it's usually the Neupogen injections that cause people problems during the preparation for stem cell harvesting. The injections can lead to pain in the bones that some people have found REALLY painful. Just do a search on "Neupogen" from the forum search box and you'll see a number of forum discussions on the subject, including tips related to medications that can really help get rid of the bone pain -- for example, Tylenol (acetaminophen / paracetamol) and Claritin (loratadine).
There was, however, a discussion recently where it was pointed out that the Cytoxan used for mobilization also can cause problems. You may want to read through it:
"Lingering side effects of Neupogen for stem cell collection," forum disc. started Dec 26, 2014.
I'd also recommend you check out goldmine848's detailed "Complete guide to stem cell collection," if you haven't seen it already.
Good luck!
Re: Side effects during SCT prep and collection
My husband had horrible nausea from the Cytoxan. I don't remember him having a headache.
Reassure your husband that just because he's having a rough time now doesn't forecast that he will also have a rough time throughout. For better or worse, it just varies greatly for each patient. Hang in there!
Reassure your husband that just because he's having a rough time now doesn't forecast that he will also have a rough time throughout. For better or worse, it just varies greatly for each patient. Hang in there!
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rumnting - Who do you know with myeloma?: husband
- When were you/they diagnosed?: 4/9/11
- Age at diagnosis: 54
Re: Side effects during SCT prep and collection
I had a headache from the Cytoxan for about 1 day. Other than that, I had the Neupogen shots for 6 days, and, the last day before the stem cell harvest, I had some lower back pain.
I took Claritin each day with the Neupogen. Once the lower back pain started from the Neupogen, I took Tylenol, and that helped with the pain.
I took Claritin each day with the Neupogen. Once the lower back pain started from the Neupogen, I took Tylenol, and that helped with the pain.
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DallasGG - Name: Kent
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: 6/20/2013
- Age at diagnosis: 56
Re: Side effects during SCT prep and collection
I suffered dreadfully from the harvest - massive fatigue, aches, and pains. I was told the bone aches are from the mobilization of the stem cells - and that it is a GOOD sign. No pain no gain, and in the long run, it's all worth it 
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Salzmav - Name: Salzmav
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: 2010
- Age at diagnosis: 52
Re: Side effects during SCT prep and collection
I had a particularly difficult time with the apheresis/collection of stem cells.
I went into distress. My breathing, anxiety, and body became uncontrollable. I had to be prompted by the nurse to open my eyes and regulate my breathing. It was a very scary process.
I went into distress. My breathing, anxiety, and body became uncontrollable. I had to be prompted by the nurse to open my eyes and regulate my breathing. It was a very scary process.
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Dondons
Re: Side effects during SCT prep and collection
I only had a squeamish feeling from the Cytoxan the day after the infusion. I was given a dose of Zofran prior to being discharged from the hospital. That took care of the nausea and it didn't return. The last 2 days before my stem cell collection I had joint pain and malaise like I had flu. I had been warned that this could happen, so I took Tylenol. That helped with the discomfort. Knowing that it was a possibility made it easier to tolerate. I also knew that my stem cells would be collected in a couple of days so I could tolerate it better.
During the stem cell collection, the nurse told me that I might feel a vibration sensation. She said that this was from calcium being leached from my bones. She told me to let me know if this occurred and she would give me a TUMS, which usually took care of the problem. If it didn't help, then she would hook me up to a calcium infusion for the duration. I ended up on the infusion, which stopped the vibration sensation. Other than that, the pre-harvest and harvesting went well. I collected enough cells for 2 transplants in one day. I also felt a lot better following the harvesting.
All the best to your husband. Be sure to let his treatment team know of any side effects that your husband is having that they haven't mentioned to you.
Nancy in Phila
During the stem cell collection, the nurse told me that I might feel a vibration sensation. She said that this was from calcium being leached from my bones. She told me to let me know if this occurred and she would give me a TUMS, which usually took care of the problem. If it didn't help, then she would hook me up to a calcium infusion for the duration. I ended up on the infusion, which stopped the vibration sensation. Other than that, the pre-harvest and harvesting went well. I collected enough cells for 2 transplants in one day. I also felt a lot better following the harvesting.
All the best to your husband. Be sure to let his treatment team know of any side effects that your husband is having that they haven't mentioned 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: Side effects during SCT prep and collection
I get terrible headaches from Zofran, so it was not given to me during Cytoxan induction.
However, I did get bad nausea for about 12 hours and a terrible migraine headache for 3 full days, and one day my vision was blurry during the headache. The doctors don't know what caused the headache, but said the Cytoxan was the likely culprit.
I was okay for awhile but, when I had to double up on the Neupogen at the end of the mobilization week, I got terrible joint, muscle, and nerve pain, and the neuropathy was at its worst. Claritin and Tylenol helped with this pain.
Anyhow, you are not alone with side effects during mobilization and collection.
After collection, I developed a terrible rash on my chest from the prep and Tegaderm that was used over the line.
Right now, as I write this on my iPad, I am in the hospital on Day +7 post transplant.
It seems like I have been here forever. It can't end soon enough. I pray for myself and others who go through transplantation that remission is granted for years.
However, I did get bad nausea for about 12 hours and a terrible migraine headache for 3 full days, and one day my vision was blurry during the headache. The doctors don't know what caused the headache, but said the Cytoxan was the likely culprit.
I was okay for awhile but, when I had to double up on the Neupogen at the end of the mobilization week, I got terrible joint, muscle, and nerve pain, and the neuropathy was at its worst. Claritin and Tylenol helped with this pain.
Anyhow, you are not alone with side effects during mobilization and collection.
After collection, I developed a terrible rash on my chest from the prep and Tegaderm that was used over the line.
Right now, as I write this on my iPad, I am in the hospital on Day +7 post transplant.
It seems like I have been here forever. It can't end soon enough. I pray for myself and others who go through transplantation that remission is granted for years.
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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: Side effects during SCT prep and collection
Thank you everyone...all of your comments have been very enlightening and helpful.
Today Jeff had his first labs since starting the Neupogen injections on Sunday. We receive the results of the blood panels electronically and were curious what the doctors are looking for to determine if he has enough stem cells to harvest? They performed a White blood Cell differential (Lymphocytes, Monos, Eosinophils, RBC's morphology, Platelets ct, Platelets morphology, and Neutrophils) and a CBC with differential (WBC Count, RBC Count, HgB, Hematocrit, MCV, RDW/RBC, Platelets count, and Differential panel).
Again thank you...best wishes to you all.
Today Jeff had his first labs since starting the Neupogen injections on Sunday. We receive the results of the blood panels electronically and were curious what the doctors are looking for to determine if he has enough stem cells to harvest? They performed a White blood Cell differential (Lymphocytes, Monos, Eosinophils, RBC's morphology, Platelets ct, Platelets morphology, and Neutrophils) and a CBC with differential (WBC Count, RBC Count, HgB, Hematocrit, MCV, RDW/RBC, Platelets count, and Differential panel).
Again thank you...best wishes to you all.
Re: Side effects during SCT prep and collection
Just thought I'd update my husband's status.
Well, it appears that all of the pain he was experiencing was worth it. On Wednesday, after about 4 hours, they harvested 13.8 million stem cells. Jeff's nurses said they've never seen anything like it.
Now he gets a break for a couple of weeks before he starts the transplant.
Hope everyone is doing well. If anyone has any tips for coping with the BCNU and melphalan, we would greatly appreciate it.
Thanks in advance.
Well, it appears that all of the pain he was experiencing was worth it. On Wednesday, after about 4 hours, they harvested 13.8 million stem cells. Jeff's nurses said they've never seen anything like it.
Now he gets a break for a couple of weeks before he starts the transplant.
Hope everyone is doing well. If anyone has any tips for coping with the BCNU and melphalan, we would greatly appreciate it.
Thanks in advance.
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