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Re: Stemming the tide: Wobbles & his transplant
Thanks for the detailed account of your stem cell harvest experience, Joe. I am sure you will have a successful day 3 and meet the collection target. Sounds like you are in good hands there.
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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: Stemming the tide: Wobbles & his transplant
It took another two sessions (four in total) for me to get my stem cell harvest count up to 2.04 million per kilogram of my body weight . The goal was to reach 2.5 million per kilogram. (As I weigh 62.3 kg, this amounts to 156 million stem cells. I only collected 127 M stem cells. ) Fortunately, I was told that the collection of 127 million stem cells is enough for me to proceed with my autologous stem cell transplant on March 9th. I was also told that since I have 4 bags of stem cells to be transfused, my transplant might occur over two days instead of the usual one day. The slower pace is done to minimize the side effects of the preservatives placed in the stem cell collection bags.
I felt a great deal of relief when I was told that I have enough stem cells to proceed with the transplant. When I started the collection process, I was expecting to spend only two days having my cells harvested. I did not expect it to drag along over 4 days. Moral: don’t count your stem cells until they are actually collected.
By the end of day 4 collection, my platelets had dropped to 10 per nanoliter (normal range is 150 to 400 per nL) and my hemoglobin level had dropped to 85 g/L (8.5 g/dL). So I had to have one unit of platelets transfused and 1 unit of red blood cells transfused. This added three hours to my medical stay at hospital. Another negative effect from the collection process has been edema. I gained 7 pounds of weight over the four days of cell harvesting. I hope to lose this over the next few days.
Today, I am catching up on neglected house chores and trying to enjoy my tea breaks.
Chin up, shoulder back … I am pressing on.
Joe
I felt a great deal of relief when I was told that I have enough stem cells to proceed with the transplant. When I started the collection process, I was expecting to spend only two days having my cells harvested. I did not expect it to drag along over 4 days. Moral: don’t count your stem cells until they are actually collected.
By the end of day 4 collection, my platelets had dropped to 10 per nanoliter (normal range is 150 to 400 per nL) and my hemoglobin level had dropped to 85 g/L (8.5 g/dL). So I had to have one unit of platelets transfused and 1 unit of red blood cells transfused. This added three hours to my medical stay at hospital. Another negative effect from the collection process has been edema. I gained 7 pounds of weight over the four days of cell harvesting. I hope to lose this over the next few days.
Today, I am catching up on neglected house chores and trying to enjoy my tea breaks.
Chin up, shoulder back … I am pressing on.
Joe
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Wobbles - Name: Joe
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: June 2016
- Age at diagnosis: 67
Re: Stemming the tide: Wobbles & his transplant
My edema has worsened to the point where I’ve gained 6 kg (13 lbs). I had hoped that it would have disappeared by now. To combat the edema I was given a prescription of a common diuretic called hydrochlorothiazide. I am not sure how many people have this problem post aphaeresis, but I certainly wish I didn’t.
I am attaching a photo of the aphaeresis unit that was being used when my stem cells were collected. It is an amazing machine emitting whirling and pumping sounds. Sometimes its beepers went off and nurses rushed into my room to make adjustments. More often than not, the problem was due to me moving my arms and somehow affecting its performance.
I am attaching a photo of the aphaeresis unit that was being used when my stem cells were collected. It is an amazing machine emitting whirling and pumping sounds. Sometimes its beepers went off and nurses rushed into my room to make adjustments. More often than not, the problem was due to me moving my arms and somehow affecting its performance.
- IMG_1452V2.jpg (101.27 KiB) Viewed 1612 times
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Wobbles - Name: Joe
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: June 2016
- Age at diagnosis: 67
Re: Stemming the tide: Wobbles & his transplant
My edema has finally gone away. I am glad for that, especially as I was so worried that it would stop my transplant from happening.
Alas, I ran into another problem in that my caregiver, Josephine, has come down with a cold or worse. As it is so close to the start of my procedure, I have been hustling to come up with an alternate plan in case Josephine does not get well before I really need her help.
My transplant coordinator told me that if there is any fever, then Josephine will potentially be infectious for three days after her temperature returns to normal. If there is no fever, then Jo probably has an ordinary cold virus and is no longer infectious.
An ailing caregiver certainly throws a wrench into having a transplant as an outpatient. This problem would not turn up in an in-patient setting … or so I think.
My chin is still up, but my shoulders are sagging slightly.
Alas, I ran into another problem in that my caregiver, Josephine, has come down with a cold or worse. As it is so close to the start of my procedure, I have been hustling to come up with an alternate plan in case Josephine does not get well before I really need her help.
My transplant coordinator told me that if there is any fever, then Josephine will potentially be infectious for three days after her temperature returns to normal. If there is no fever, then Jo probably has an ordinary cold virus and is no longer infectious.
An ailing caregiver certainly throws a wrench into having a transplant as an outpatient. This problem would not turn up in an in-patient setting … or so I think.
My chin is still up, but my shoulders are sagging slightly.
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Wobbles - Name: Joe
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: June 2016
- Age at diagnosis: 67
Re: Stemming the tide: Wobbles & his transplant
Joe,
Thank you for sharing your experience with us, It makes the unknown a little less frightening for those of us who are lingering in the background awaiting to take our turn. So glad you are doing better with the edema! Now for Josephine to get better, I'm sure she has just ran herself down a little and will recover quickly. Good luck and stay well!
Thank you for sharing your experience with us, It makes the unknown a little less frightening for those of us who are lingering in the background awaiting to take our turn.
So glad you are doing better with the edema! Now for Josephine to get better, I'm sure she has just ran herself down a little and will recover quickly. Good luck and stay well!-
Dippydoo - Name: DippyDoo
- Who do you know with myeloma?: Myself MGUS
- When were you/they diagnosed?: 2/9/2017
- Age at diagnosis: 49
Re: Stemming the tide: Wobbles & his transplant
Dippydoo - I know what you mean about the daunting aspects of having a stem cell transplant. When my hematologist first mentioned that this was a possibility for me, my heart sank a lot. Eventually, I realized that I needed to keep a sharp focus on what were my two main aims, namely to live long and to live happily. For me (fingers crossed), going for a stem cell transplant will help me achieve those aims.
My caregiver’s health seems to be getting better and I am hopeful that she will improve enough that she will be able to act as my caregiver about the time I have my melphalan treatment next week. Just in case Jo does not get better, I’ve made reservations to stay in one of the cancer lodges (Jean C Barber Lodge) near the hospital where I am to have my transplant. That’s plan B.
Today, I managed to go for a long walk in the rain. It was refreshing and the exercise has buoyed my spirits.
I go for blood tests on Sunday and on Monday I have my Hickman line inserted. I am not anticipating any problems with the procedure.
Joe
My caregiver’s health seems to be getting better and I am hopeful that she will improve enough that she will be able to act as my caregiver about the time I have my melphalan treatment next week. Just in case Jo does not get better, I’ve made reservations to stay in one of the cancer lodges (Jean C Barber Lodge) near the hospital where I am to have my transplant. That’s plan B.
Today, I managed to go for a long walk in the rain. It was refreshing and the exercise has buoyed my spirits.
I go for blood tests on Sunday and on Monday I have my Hickman line inserted. I am not anticipating any problems with the procedure.
Joe
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Wobbles - Name: Joe
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: June 2016
- Age at diagnosis: 67
Re: Stemming the tide: Wobbles & his transplant
Today, I had my Hickman line inserted. For the most part it was smooth sailing. The fist step in the procedure was to insert an IV line into my left arm. Next, I was given IV antibiotics.
Once in the operating theatre, I was I given a mild IV sedative (hardly felt it) and also local anesthetic around the entrance and exit points as well as along the path from entrance to exit points.
After the anesthetics were administered, the surgeon got down to work. The only thing that I could sense was some pressure and pulling as the Hickman line was inserted. I felt no discomfort at all.
After the Hickman line was inserted, I was sent to my bone marrow daycare centre where I was watched for two hours. I did have a minor amount of bleeding. I was sent home with instructions to watch for signs of infection.
Once I got home, the local anesthetic began to wear off and I experienced a small amount of dull pain near the entrance wound. I’ve taken Tylenol (acetaminophen, paracetamol) to combat that discomfort.
My biggest problem has been trying to figure out the best way to wash my head without wetting the dressing. I decided to use the kitchen sink. I feel like a kid again.
Tomorrow, I go back to hospital for a dressing change.
The next day I will have the chemotherapy drug melphalan infused through my Hickman line. Day -1.
Now that my caregiver's cold has disappeared, I can go back to my original plan to stay at my place as I am treated as an outpatient.
Since we’re having an unusually snowy winter here in Vancouver, I decided to include a picture of yesterday’s snow fall. The view is from my bedroom window.
Joe
Once in the operating theatre, I was I given a mild IV sedative (hardly felt it) and also local anesthetic around the entrance and exit points as well as along the path from entrance to exit points.
After the anesthetics were administered, the surgeon got down to work. The only thing that I could sense was some pressure and pulling as the Hickman line was inserted. I felt no discomfort at all.
After the Hickman line was inserted, I was sent to my bone marrow daycare centre where I was watched for two hours. I did have a minor amount of bleeding. I was sent home with instructions to watch for signs of infection.
Once I got home, the local anesthetic began to wear off and I experienced a small amount of dull pain near the entrance wound. I’ve taken Tylenol (acetaminophen, paracetamol) to combat that discomfort.
My biggest problem has been trying to figure out the best way to wash my head without wetting the dressing. I decided to use the kitchen sink. I feel like a kid again.
Tomorrow, I go back to hospital for a dressing change.
The next day I will have the chemotherapy drug melphalan infused through my Hickman line. Day -1.
Now that my caregiver's cold has disappeared, I can go back to my original plan to stay at my place as I am treated as an outpatient.
Since we’re having an unusually snowy winter here in Vancouver, I decided to include a picture of yesterday’s snow fall. The view is from my bedroom window.
Joe
- SundaySnowV3.jpg (45.8 KiB) Viewed 1433 times
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Wobbles - Name: Joe
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: June 2016
- Age at diagnosis: 67
Re: Stemming the tide: Wobbles & his transplant
Hi Joe. Sounds like you're getting all set for the transplant. I am glad to hear your caregiver is recovering.
I was in to visit the hematologist on Monday. Having read your thread so far has prepared me fairly well for my consultation. I was able to understand most of it, and my daughter helped take notes. I was provided a lot of information. They sent me over to the lab for some more blood work, 12 vials. We discussed the timing, the potential side effects, etc. Of course I have your account to get the real picture.
Turns out that I will have to wait until July or August for the transplant. They will contact me in a couple of weeks with the schedule. I am okay with this as it will give me time to plan out my stay in Vancouver and organize my needs.
Best of luck to you, Joe. I know there are some bumpier parts coming up, but you are a positive and determined guy who will do just great.
I was in to visit the hematologist on Monday. Having read your thread so far has prepared me fairly well for my consultation. I was able to understand most of it, and my daughter helped take notes. I was provided a lot of information. They sent me over to the lab for some more blood work, 12 vials. We discussed the timing, the potential side effects, etc. Of course I have your account to get the real picture.
Turns out that I will have to wait until July or August for the transplant. They will contact me in a couple of weeks with the schedule. I am okay with this as it will give me time to plan out my stay in Vancouver and organize my needs.
Best of luck to you, Joe. I know there are some bumpier parts coming up, but you are a positive and determined guy who will do just great.
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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: Stemming the tide: Wobbles & his transplant
Hi Joe,
Thanks for your updates. You're really providing a lot of detail in your posts, which I appreciate a lot.
I also am glad to hear that Jo is doing better. I'll take it as a good omen prior to your melphalan infusion tomorrow and the first week or two after the infusion. I hope you sail through the process with few, if any, major side effects, and that the melphalan really does a number on any remaining myeloma in your system.
Good luck!
Thanks for your updates. You're really providing a lot of detail in your posts, which I appreciate a lot.
I also am glad to hear that Jo is doing better. I'll take it as a good omen prior to your melphalan infusion tomorrow and the first week or two after the infusion. I hope you sail through the process with few, if any, major side effects, and that the melphalan really does a number on any remaining myeloma in your system.
Good luck!
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JimNY
Re: Stemming the tide: Wobbles & his transplant
Colin and Jim - Thanks for your encouraging comments. I appreciate them.
Today was the day I had my melphalan treatment. It went quite well.
The first thing they did was to draw blood from my Hickman line for lab testing purposes. I was also given dexamethasone (8 mg) and ondansetron (Zofran) (8 mg) to control nausea.
Next I had a two-hour infusion of saline solution. Once this was over, the nurse came into the room and attached a bag containing the melphalan chemotherapy agent. This was infused along with the saline solution. (My Hickman line has three lumens, allowing three simultaneous flows if necessary.) Once the first bag of melphalan was empty, I was given a second bag. The whole infusion process took 4 hours from start to end.
I had no problems at all with the infusion of the melphalan. No nausea or discomfort. Just a feeling of happiness that the melphalan “did a number” on my myeloma.
I had a long consult with the resident pharmacist who explained in a very clear manner the purposes of all the drugs being prescribed for me. Suffice it to say, they were all centered on anti-emetics, antibacterials, antifungals, and antivirals. It will be quite a task to get it all sorted out and put into my daily routine.
Tomorrow, I get my stem cell transplant, all four bags from my four days of aphaeresis. It’ll be good to have those little fellows return home.
Joe
P.S. - Caregiver Jo is with me now and she is just starting to make us dinner. What more could I ask for?
Today was the day I had my melphalan treatment. It went quite well.
The first thing they did was to draw blood from my Hickman line for lab testing purposes. I was also given dexamethasone (8 mg) and ondansetron (Zofran) (8 mg) to control nausea.
Next I had a two-hour infusion of saline solution. Once this was over, the nurse came into the room and attached a bag containing the melphalan chemotherapy agent. This was infused along with the saline solution. (My Hickman line has three lumens, allowing three simultaneous flows if necessary.) Once the first bag of melphalan was empty, I was given a second bag. The whole infusion process took 4 hours from start to end.
I had no problems at all with the infusion of the melphalan. No nausea or discomfort. Just a feeling of happiness that the melphalan “did a number” on my myeloma.
I had a long consult with the resident pharmacist who explained in a very clear manner the purposes of all the drugs being prescribed for me. Suffice it to say, they were all centered on anti-emetics, antibacterials, antifungals, and antivirals. It will be quite a task to get it all sorted out and put into my daily routine.
Tomorrow, I get my stem cell transplant, all four bags from my four days of aphaeresis. It’ll be good to have those little fellows return home.
Joe
P.S. - Caregiver Jo is with me now and she is just starting to make us dinner. What more could I ask for?
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Wobbles - Name: Joe
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: June 2016
- Age at diagnosis: 67
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