Hello all,
I am going in for my stem cell harvest only this coming Monday. I had my high dose Cytoxan (cyclophosphamide) 11 days ago, with two daily shots of Neupogen that started 10 days ago. I will have another one tomorrow before I leave to have my central line placed.
Since I have to travel 200 miles from the stem cell transplant (SCT) hospital, they are going to place the line and do a harvest on the first day. even if I don't collect enough the first day. At least that's one less day away from home.
I have read where some people have severe bone pain from the Neupogen. I have had very little. Only in my lower legs, from the knee down. I had some issues with neuropathy weeks ago, from Velcade. I have been taking Lyrica (pregabalin) which, for me, was a miracle drug that took all the neuropathy pain away. All my treatments have stopped, but I am still taking the Lyrica 100 mg 3 time per day.
I am wondering if the Lyrica is the reason for very little pain from the Neupogen. The Neupogen dose is 800.
Anyone have any thoughts on this?
Thank You, Castaway
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Castaway - Name: George
- Who do you know with myeloma?: just myself
- When were you/they diagnosed?: 1/24/14
- Age at diagnosis: 62
Re: Stem cell harvest / Lyrica & bone pain from Neupogen
I just wanted to update my stem cell harvest and Lyrica for neuropathy pain.
As far as Lyrica helping with possible pain from Neupogen, my stem cell coordinator and my myeloma specialist told me that, due to it having such an effect on my neuropathy, it could very well be aiding in any possible pain from the Neupogen injections. They also explained that everyone has a different pain tolerance level. Mine has always been high, so maybe it's a combination of things. Like everything about this cancer, it seems everyone is a little different when it comes to drug reactions, complications, and pain from treatments.
As far as my actual stem cell harvest, I would have to start way before the harvest to let everyone know how my whole process started.
I decided to do a cell harvest first, then do the transplant later. Several circumstances and distance to the SCT hospital dictated my decision. Once that was coordinated between my local oncologist and the SCT hospital, all the tests and information was given to my local oncologist to order. All the tests had to be done 3 weeks prior to the cell harvest, no more than 3 weeks.
My tests were – bone survey, bone scan, pulmonary function tests, gated heart-planar, EKG, and enough labs to fill 19 vials. Oh, and yes, another bone marrow biopsy; no pain at all from the procedure – only a little sting from the shots to numb the biopsy area.
After that, it was wait and see if all was good to go for the harvest. It was, and the exact date was set for the harvest. Then hotel reservations were made. My wife having to use a week of vacation time had to be addressed. And getting the travel info to the hospital from our hotel.
The first day we arrived at the hospital at 6:30 a.m. to register and have more labs done. Then it was off to have the line placed around 9:00 am. I basically wore sweats and a tee shirt. The line placement was done in a surgery room. A light sedative with pain meds were given through IV. I was awake throughout the procedure. A slight amount of pressure was felt when the line was placed. It took all of about 10 to 15 minutes to place the line. Most of the 2 hours spent at radiology was prep time.
Then it was off to start the cell collection. I decided to do both the line placement and collection in one day. It was a very long day, to say the least, for me and my wife. Once hooked up to collect the cells for 5 hours, you are not going anywhere. A nurse was with me the whole time. I collected 3.2 million on day one and another 2.0 on day 2. They needed between 3 and 5 million for a transplant. Every cell collection is double typed, meaning that they label the cell bag and have you verify it's actually you. Then they draw a vial of blood, label it again, and ask if it's you on the label. Then the bag of cells and the vial are together. I did not collect enough for a second transplant. But I am happy with enough to at least have one.
On day three I came back myself, this time to the radiology department, to have the line removed, again in a surgery room. They prepped the area around the line, and before you know it, the line was out. I had to wait about 30 minutes before I could leave radiology.
Some suggestions: Wear a button-up shirt so your line can be accessed without removing your shirt entirely. Wear cozy light sweats. You are going to be in a bed for 5 hours, and if you are cold, they will give warm blankets as you need them. I had my Ipad so I played some games and sent some emails out.
Mostly I slept a lot the two days of collection. Make sure your spouse or someone that is considered your caregiver has something to do also. It is rather boring for them.
If I lived closer to the SCT hospital, I would have had the line placed one day and start the collection the next. I felt bad for my wife just having to hang out during the cell collection. She could have left, but there was really nothing for her to do. Plus, she would probably get lost driving around in a large city.
Bottom line, I feel much better now, knowing I have those cells waiting for me. Plus, I was also put on the hospitals blood bank register. I never knew my blood type. B-Positive, so that's a good thing. I would do it again, no question.
Castaway
As far as Lyrica helping with possible pain from Neupogen, my stem cell coordinator and my myeloma specialist told me that, due to it having such an effect on my neuropathy, it could very well be aiding in any possible pain from the Neupogen injections. They also explained that everyone has a different pain tolerance level. Mine has always been high, so maybe it's a combination of things. Like everything about this cancer, it seems everyone is a little different when it comes to drug reactions, complications, and pain from treatments.
As far as my actual stem cell harvest, I would have to start way before the harvest to let everyone know how my whole process started.
I decided to do a cell harvest first, then do the transplant later. Several circumstances and distance to the SCT hospital dictated my decision. Once that was coordinated between my local oncologist and the SCT hospital, all the tests and information was given to my local oncologist to order. All the tests had to be done 3 weeks prior to the cell harvest, no more than 3 weeks.
My tests were – bone survey, bone scan, pulmonary function tests, gated heart-planar, EKG, and enough labs to fill 19 vials. Oh, and yes, another bone marrow biopsy; no pain at all from the procedure – only a little sting from the shots to numb the biopsy area.
After that, it was wait and see if all was good to go for the harvest. It was, and the exact date was set for the harvest. Then hotel reservations were made. My wife having to use a week of vacation time had to be addressed. And getting the travel info to the hospital from our hotel.
The first day we arrived at the hospital at 6:30 a.m. to register and have more labs done. Then it was off to have the line placed around 9:00 am. I basically wore sweats and a tee shirt. The line placement was done in a surgery room. A light sedative with pain meds were given through IV. I was awake throughout the procedure. A slight amount of pressure was felt when the line was placed. It took all of about 10 to 15 minutes to place the line. Most of the 2 hours spent at radiology was prep time.
Then it was off to start the cell collection. I decided to do both the line placement and collection in one day. It was a very long day, to say the least, for me and my wife. Once hooked up to collect the cells for 5 hours, you are not going anywhere. A nurse was with me the whole time. I collected 3.2 million on day one and another 2.0 on day 2. They needed between 3 and 5 million for a transplant. Every cell collection is double typed, meaning that they label the cell bag and have you verify it's actually you. Then they draw a vial of blood, label it again, and ask if it's you on the label. Then the bag of cells and the vial are together. I did not collect enough for a second transplant. But I am happy with enough to at least have one.
On day three I came back myself, this time to the radiology department, to have the line removed, again in a surgery room. They prepped the area around the line, and before you know it, the line was out. I had to wait about 30 minutes before I could leave radiology.
Some suggestions: Wear a button-up shirt so your line can be accessed without removing your shirt entirely. Wear cozy light sweats. You are going to be in a bed for 5 hours, and if you are cold, they will give warm blankets as you need them. I had my Ipad so I played some games and sent some emails out.
Mostly I slept a lot the two days of collection. Make sure your spouse or someone that is considered your caregiver has something to do also. It is rather boring for them.
If I lived closer to the SCT hospital, I would have had the line placed one day and start the collection the next. I felt bad for my wife just having to hang out during the cell collection. She could have left, but there was really nothing for her to do. Plus, she would probably get lost driving around in a large city.
Bottom line, I feel much better now, knowing I have those cells waiting for me. Plus, I was also put on the hospitals blood bank register. I never knew my blood type. B-Positive, so that's a good thing. I would do it again, no question.
Castaway
-
Castaway - Name: George
- Who do you know with myeloma?: just myself
- When were you/they diagnosed?: 1/24/14
- Age at diagnosis: 62
Re: Stem cell harvest / Lyrica & bone pain from Neupogen
Thanks for sharing your experience Castaway,
I also had a stem cell harvest, which lasted 4 days. We collected for 4 hours a day.
I just wanted to point out for those who might be unaware of it that the American Cancer Society provide free housing in what they call the Hope Lodge. It is not dependent on personal income but just the distance that you have to travel to the hospital for treatment. The facility is clean and very nice. I would recommend to anyone to contact ACS through their website to check it out if you are planning a treatment in a distant, but major, hospital.
Good Luck
I also had a stem cell harvest, which lasted 4 days. We collected for 4 hours a day.
I just wanted to point out for those who might be unaware of it that the American Cancer Society provide free housing in what they call the Hope Lodge. It is not dependent on personal income but just the distance that you have to travel to the hospital for treatment. The facility is clean and very nice. I would recommend to anyone to contact ACS through their website to check it out if you are planning a treatment in a distant, but major, hospital.
Good Luck
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Cerberus - Name: martin
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 2010
- Age at diagnosis: 57
Re: Stem cell harvest / Lyrica & bone pain from Neupogen
For those interested in another patient's experience with the stem cell collection process, please see Beacon columnist Andrew Gordon's posting in the earlier Beacon forum discussion, "Stem Cell Harvest - The Complete Guide" (started Jan 24, 2014).
Re: Stem cell harvest / Lyrica & bone pain from Neupogen
Martin,
Thank you for the information on the free housing. I was unaware of that. I have to gather up all my receipts for the hotel stay during my stem cell harvest. My stem cell coordinator told me that the American Cancer Society will assist with the hotel expenses. How much, I don't really know. Anything helps.
Thank You, Castaway
Thank you for the information on the free housing. I was unaware of that. I have to gather up all my receipts for the hotel stay during my stem cell harvest. My stem cell coordinator told me that the American Cancer Society will assist with the hotel expenses. How much, I don't really know. Anything helps.
Thank You, Castaway
-
Castaway - Name: George
- Who do you know with myeloma?: just myself
- When were you/they diagnosed?: 1/24/14
- Age at diagnosis: 62
Re: Stem cell harvest / Lyrica & bone pain from Neupogen
There is also the Gift of Life transplant house in the Mayo area, and other places as well, but I don't remember them all right now. We paid 30 dollars a day to stay there, 2 beds, bathroom, and kitchens to do your own cooking. Very nice place, and a sense of camaraderie.
Re: Stem cell harvest / Lyrica & bone pain from Neupogen
Cindylouise & Martin,
I checked on the American Cancer Society web site, and unfortunately, there are no Hope Lodge listed here in California. I am going to call them today and try to speak with someone there about housing assistance when I do the actual transplant.
I found several housing assistance programs in the Los Angeles area but you have to be using the hospital that helps with housing. My hospital is not one of those.
I will check with the Gift of Life as you mentioned. I do have an Aflac cancer policy, which has really paid a lot for treatments and some towards travel and hotel stay. I don't believe they pay for extended stay but I will have to look into that also.
Thank you, Castaway
I checked on the American Cancer Society web site, and unfortunately, there are no Hope Lodge listed here in California. I am going to call them today and try to speak with someone there about housing assistance when I do the actual transplant.
I found several housing assistance programs in the Los Angeles area but you have to be using the hospital that helps with housing. My hospital is not one of those.
I will check with the Gift of Life as you mentioned. I do have an Aflac cancer policy, which has really paid a lot for treatments and some towards travel and hotel stay. I don't believe they pay for extended stay but I will have to look into that also.
Thank you, Castaway
-
Castaway - Name: George
- Who do you know with myeloma?: just myself
- When were you/they diagnosed?: 1/24/14
- Age at diagnosis: 62
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