I am new to the forum, Joe, and just read through your posts. I'm hoping you are doing ok and that the DVT is being dissolved.
Thinking of you and all the best for your recovery.
Forums
Re: Stemming the tide: Wobbles & his transplant
Day +24
Thanks everybody for your recovery wishes. I appreciate them all. And yes, Colin, weather here is sunny. It’s been great to walk around without an umbrella. The mountain views are fantastic with gads of fresh snow. Brenols, welcome to the Beacon! Dippydo, thanks for the prayers.
I’ve recently moved from my home in Burnaby to my caregiver’s townhouse in Vancouver. This has some advantages, as I am 15 minutes closer to hospital, I get to wake up to a beautiful garden outside my window (comes with nesting birds) and, most importantly, my caregiver is more relaxed back in her own place. Also, there is a dog, Charlie, in the house, but I am careful to wash my hands frequently.
My DVT is slowly improving. I was able to go for a 1500 foot (460 m) walk this morning. As my platelets have consistently been above 50 per nanoliter, I am able to take my full dose of anticoagulant – 1250 IU of dalteparin sodium (Fragmin) injection. I am being careful to keep my leg elevated when it starts to ache. Also I use hot compresses to soothe the area, and Tylenol (acetaminophen, paracetamol) to control the pain.
My white blood cell counts continue to languish around 2 per nanoliter. My doctors are referring to my situation as a “hesitant” recovery. My Hickman line may not be removed for at least a few more days. I am still not out of the woods.
Wishing every one well,
Joe
Thanks everybody for your recovery wishes. I appreciate them all. And yes, Colin, weather here is sunny. It’s been great to walk around without an umbrella. The mountain views are fantastic with gads of fresh snow. Brenols, welcome to the Beacon! Dippydo, thanks for the prayers.
I’ve recently moved from my home in Burnaby to my caregiver’s townhouse in Vancouver. This has some advantages, as I am 15 minutes closer to hospital, I get to wake up to a beautiful garden outside my window (comes with nesting birds) and, most importantly, my caregiver is more relaxed back in her own place. Also, there is a dog, Charlie, in the house, but I am careful to wash my hands frequently.
My DVT is slowly improving. I was able to go for a 1500 foot (460 m) walk this morning. As my platelets have consistently been above 50 per nanoliter, I am able to take my full dose of anticoagulant – 1250 IU of dalteparin sodium (Fragmin) injection. I am being careful to keep my leg elevated when it starts to ache. Also I use hot compresses to soothe the area, and Tylenol (acetaminophen, paracetamol) to control the pain.
My white blood cell counts continue to languish around 2 per nanoliter. My doctors are referring to my situation as a “hesitant” recovery. My Hickman line may not be removed for at least a few more days. I am still not out of the woods.
Wishing every one well,
Joe
-
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
I have updated my white blood cell graph. My counts seem to be plateauing instead of increasing. I am hoping that they soon start to rise so that I can finally get my Hickman line removed.
- My WBC Apr 1.png (16.53 KiB) Viewed 1220 times
-
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
Good morning Joe!
Thanks for the update and posting in about your stem cell transplant journey. Glad to hear that the DVT is clearing up with the help of Fragmin injections.
Good to know that you have moved to be closer to the hospital.
It will be a relief to have the Hickman catheter removed. Mine was in until the 100 day mark, which was a long time considering it was installed before my stem cell harvest!
Best wishes from Nancy (on the other side of the snowy mountains).
Thanks for the update and posting in about your stem cell transplant journey. Glad to hear that the DVT is clearing up with the help of Fragmin injections.
Good to know that you have moved to be closer to the hospital.
It will be a relief to have the Hickman catheter removed. Mine was in until the 100 day mark, which was a long time considering it was installed before my stem cell harvest!
Best wishes from Nancy (on the other side of the snowy mountains).
-
Nancy Shamanna - Name: Nancy Shamanna
- Who do you know with myeloma?: Self and others too
- When were you/they diagnosed?: July 2009
Re: Stemming the tide: Wobbles & his transplant
Good morning Nancy,
Wow! You had your Hickman catheter installed for 100 days. And here I was beginning to feel sorry for myself. Did you have a slow engraftment like me or were there other reasons to keep your Hickman catheter installed?
Joe
Wow! You had your Hickman catheter installed for 100 days. And here I was beginning to feel sorry for myself. Did you have a slow engraftment like me or were there other reasons to keep your Hickman catheter installed?
Joe
-
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,
I don't know if it was a 'slow engraftment', but I did get Neupogen injections to speed the growth of the white blood cells. I know that when the turning point came around for engraftment, I was getting close to needing a transfusion (I think of platelets, but am not sure). The Neupogen probably caused me to have a fever and other symptoms that caused me to be readmitted to hospital for a couple of days.. It sure was not an easy time, but I got really good medical care and had fantastic support from my family and friends.
I think that the Hickman catheter was left in because, in the case of needing a second transplant right after the first one, that would have been one less medical procedure to have, to insert one again. However, everything turned out fine, and I asked if I needed a second transplant and the answer was that I did not! From my reading on the Beacon, I learned that most others do not seem to have the Hickman catheter left in for a long time.
Hope that helps!
I don't know if it was a 'slow engraftment', but I did get Neupogen injections to speed the growth of the white blood cells. I know that when the turning point came around for engraftment, I was getting close to needing a transfusion (I think of platelets, but am not sure). The Neupogen probably caused me to have a fever and other symptoms that caused me to be readmitted to hospital for a couple of days.. It sure was not an easy time, but I got really good medical care and had fantastic support from my family and friends.
I think that the Hickman catheter was left in because, in the case of needing a second transplant right after the first one, that would have been one less medical procedure to have, to insert one again. However, everything turned out fine, and I asked if I needed a second transplant and the answer was that I did not! From my reading on the Beacon, I learned that most others do not seem to have the Hickman catheter left in for a long time.
Hope that helps!
-
Nancy Shamanna - Name: Nancy Shamanna
- Who do you know with myeloma?: Self and others too
- When were you/they diagnosed?: July 2009
Re: Stemming the tide: Wobbles & his transplant
Day +27
Hi Nancy,
Thanks for that info. It does indeed help me get a better handle on my situation.
Right now I’ve had such good improvement in my platelet (86 per nanoliter) and neutrophil counts (1.6 per nanoliter) that my doctors want to take my Hickman line out next Monday (Day +32). They will do one more blood test prior to removal of Hickman line in order to be sure that I will not need the line anymore.
A second transplant is not an option for me as my harvesting procedure barely got enough stem cells for one transplant. I've been lucky to get this far.
Thanks again,
Joe
Hi Nancy,
Thanks for that info. It does indeed help me get a better handle on my situation.
Right now I’ve had such good improvement in my platelet (86 per nanoliter) and neutrophil counts (1.6 per nanoliter) that my doctors want to take my Hickman line out next Monday (Day +32). They will do one more blood test prior to removal of Hickman line in order to be sure that I will not need the line anymore.
A second transplant is not an option for me as my harvesting procedure barely got enough stem cells for one transplant. I've been lucky to get this far.
Thanks again,
Joe
-
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,
Thanks for the additional updates. I'm sorry to hear about the challenges that have come up the past week or two, such as the DVT. But it's great that to hear that your your blood cell counts are recovering. I hope you continue to get good news.
Good luck!
Thanks for the additional updates. I'm sorry to hear about the challenges that have come up the past week or two, such as the DVT. But it's great that to hear that your your blood cell counts are recovering. I hope you continue to get good news.
Good luck!
Re: Stemming the tide: Wobbles & his transplant
Day 33
Yesterday, I had my Hickman line removed. It was essentially a painless process. All the doctor had to do was remove one suture and then yank on the line. I believe he had to crush the collar attached to the line just before it reached the exit point on my chest. After the line was removed, pressure was applied for twenty minutes to help minimize any bleeding.
I am now officially discharged from the bone marrow clinic at Vancouver General Hospital, although I will remain in the care of one of the doctors associated with the clinic for about three more months. She has given me a requisition for monthly blood work. The blood work is the usual stuff for multiple myeloma patients: complete blood panel, liver and kidney panels, and protein monitoring including a search for any remaining monoclonal proteins.
Looking back, I can say I’ve been through a lot. I continue to have bowel issues (intestinal cramping), and I still have to deal with my deep vein thrombosis for at least the next three months. I have lost weight (7%) and still feel weak and tired. In the next few days, I hope to resume a regular exercise regimen. I am sure this will help.
Looking to the future, my hematologist at VGH suggested that I soon start maintenance therapy. I was told that post-transplant maintenance therapy extends the overall survivability time line. The suggested chemo agent was Revlimid (lenalidomide), which unfortunately has deep vein thrombosis as a side effect. I’ll be exploring the possibility of maintenance therapy over the next month.
Thanks to all the people who have added comments to my thread on my stem cell transplant journey. I found them to be encouraging and of help in my journey.
I want to recognize all the help given to me by the staff at the Bone Marrow Clinic at VGH. They are a truly remarkable group. I always felt that I was getting top level care along with important emotional support on my down days.
Lastly, I also recognize the essential support that my caregiver, Josephine, has provided me over the last five weeks. I could not have gotten this far without her help. Bless her.
Joe
Yesterday, I had my Hickman line removed. It was essentially a painless process. All the doctor had to do was remove one suture and then yank on the line. I believe he had to crush the collar attached to the line just before it reached the exit point on my chest. After the line was removed, pressure was applied for twenty minutes to help minimize any bleeding.
I am now officially discharged from the bone marrow clinic at Vancouver General Hospital, although I will remain in the care of one of the doctors associated with the clinic for about three more months. She has given me a requisition for monthly blood work. The blood work is the usual stuff for multiple myeloma patients: complete blood panel, liver and kidney panels, and protein monitoring including a search for any remaining monoclonal proteins.
Looking back, I can say I’ve been through a lot. I continue to have bowel issues (intestinal cramping), and I still have to deal with my deep vein thrombosis for at least the next three months. I have lost weight (7%) and still feel weak and tired. In the next few days, I hope to resume a regular exercise regimen. I am sure this will help.
Looking to the future, my hematologist at VGH suggested that I soon start maintenance therapy. I was told that post-transplant maintenance therapy extends the overall survivability time line. The suggested chemo agent was Revlimid (lenalidomide), which unfortunately has deep vein thrombosis as a side effect. I’ll be exploring the possibility of maintenance therapy over the next month.
Thanks to all the people who have added comments to my thread on my stem cell transplant journey. I found them to be encouraging and of help in my journey.
I want to recognize all the help given to me by the staff at the Bone Marrow Clinic at VGH. They are a truly remarkable group. I always felt that I was getting top level care along with important emotional support on my down days.
Lastly, I also recognize the essential support that my caregiver, Josephine, has provided me over the last five weeks. I could not have gotten this far without her help. Bless her.
Joe
- Attachments
-
- My WCB Apr 10, 2017.png (17.49 KiB) Viewed 792 times
-
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 Wobbles:
So glad to hear that you are recovering quickly from the transplant.
You said that it was your understanding that maintenance Revlimid increases your overall survival. I am not a doctor, nor do I claim to be an expert, but I believe the maintenance Revlimid increases your progression-free survival, not your overall survival. I hope if this is incorrect someone with much more knowledge will correct me.
I only believe this is the case, because I have tried to get as much info as possible, because Revlimid makes me very ill, and I am weighing heavily not resuming my maintenance dosage.
Kathleen
So glad to hear that you are recovering quickly from the transplant.
You said that it was your understanding that maintenance Revlimid increases your overall survival. I am not a doctor, nor do I claim to be an expert, but I believe the maintenance Revlimid increases your progression-free survival, not your overall survival. I hope if this is incorrect someone with much more knowledge will correct me.
I only believe this is the case, because I have tried to get as much info as possible, because Revlimid makes me very ill, and I am weighing heavily not resuming my maintenance dosage.
Kathleen
-
kshornb - Name: kshornber
- Who do you know with myeloma?: self
- When were you/they diagnosed?: July 2015
- Age at diagnosis: 52
Return to Treatments & Side Effects