Hey Snip,
There is a difference between consolidation therapy and maintenance after SCT...I think.
Maintenance, in my case, is low dose Revlimid. If I opted for Consolidation therapy, it was going to be more heavy duty chemo.
Since I don't have any side effects from Revlimid, I opted to take it. I don't worry about the secondary cancers since it appears to be a pretty small number.
I'm sure everyone is reviewing their Avitars after Susie's comment! Your pic is fine.
Forums
Re: Post-ASCT treatments... yes or no?
Hi Stann,
lol lol...I LIKE Snipp's new personable avatar!!
He has a distinguished visage.
The other scowling one was mean and sinister, the brow was furrowed, there was a dark shadow over the face along with a heavy mustache and a very strong square jawline. I can't of course speak for others, but I did scroll past the avatar.
My apologies, if that observation was off putting to others.
lol lol...I LIKE Snipp's new personable avatar!!
He has a distinguished visage.
The other scowling one was mean and sinister, the brow was furrowed, there was a dark shadow over the face along with a heavy mustache and a very strong square jawline. I can't of course speak for others, but I did scroll past the avatar.
My apologies, if that observation was off putting to others.
-
suzierose - Name: suzierose
- When were you/they diagnosed?: 2 sept 2011
Re: Post-ASCT treatments... yes or no?
wrong thread
-
suzierose - Name: suzierose
- When were you/they diagnosed?: 2 sept 2011
Re: Post-ASCT treatments... yes or no?
Suzierose, The port in the arm has been available for a number of years. My mother had 2 of them and then 1 in her chest. The ones she had in her arms after a time became infected and then she went to chest area. She didn't have any problems with that one. I would ask about what the docs see as far as infections issues with one or the other. May not be any difference but thought I'dlet you know my experience. Never hurts to ask questions.
I haven't had a port, but did have a Neostar cath for my SCT. I didn't have any problems with it, but didn't like the thing hangin from me, couldn't get it wet so taking a shower was always a longer process.
Ritz
I haven't had a port, but did have a Neostar cath for my SCT. I didn't have any problems with it, but didn't like the thing hangin from me, couldn't get it wet so taking a shower was always a longer process.
Ritz
-
Ritz - Name: Ritz
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: Oct 2010
- Age at diagnosis: 62
Re: Post-ASCT treatments... yes or no?
Hi Ritz,
Just for clarity..did your mom have a PICC line or a port in your arm?
Often times, they are confused.
Were the lines exposed outside the arm?
PICC lines hang out of the arm and are exposed thus the higher infection rate. The port in the arm is not exposed just as the port in the chest is not.
A port in the arm is often described as an unexposed PICC line. Due to it snaking up the arm like a PICC.
Based on your sayin things were hangin outside the arm, I believe you are speaking about a PICC line vs a port.
And you are soooo right, about asking questions. I ask lots of questions..and thus the thread. I want to hear what folks experiences have been.
Just for clarity..did your mom have a PICC line or a port in your arm?
Often times, they are confused.
Were the lines exposed outside the arm?
PICC lines hang out of the arm and are exposed thus the higher infection rate. The port in the arm is not exposed just as the port in the chest is not.
A port in the arm is often described as an unexposed PICC line. Due to it snaking up the arm like a PICC.
Based on your sayin things were hangin outside the arm, I believe you are speaking about a PICC line vs a port.
And you are soooo right, about asking questions. I ask lots of questions..and thus the thread. I want to hear what folks experiences have been.
-
suzierose - Name: suzierose
- When were you/they diagnosed?: 2 sept 2011
Re: Post-ASCT treatments... yes or no?
Suzierose....Sorry for not being clear with my response. My mother had under the skin ports.
The first one was app. 10 yrs ago. First one arm then the other after the first became infected.
After the second port got infected, she had it placed in her chest. I believe the ones in her arms each lasted a yr. or so, but the one in chest was still in when she passed on 3 yrs ago.
I had the neostar cath for my SCT. It had 3 lines and was rather bulky. It was in place for 2 mths. or so.
My mother was dx'ed IGA lambda at age 75 and lived for 10 years.
I was dx'ed in Oct. 2010 with the same strain IGA lambda. Had the SCT on Nov. 9th
and am doing well.
ritz
The first one was app. 10 yrs ago. First one arm then the other after the first became infected.
After the second port got infected, she had it placed in her chest. I believe the ones in her arms each lasted a yr. or so, but the one in chest was still in when she passed on 3 yrs ago.
I had the neostar cath for my SCT. It had 3 lines and was rather bulky. It was in place for 2 mths. or so.
My mother was dx'ed IGA lambda at age 75 and lived for 10 years.
I was dx'ed in Oct. 2010 with the same strain IGA lambda. Had the SCT on Nov. 9th
and am doing well.
ritz
-
Ritz - Name: Ritz
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: Oct 2010
- Age at diagnosis: 62
Re: Post-ASCT treatments... yes or no?
wrong thread.
-
suzierose - Name: suzierose
- When were you/they diagnosed?: 2 sept 2011
Re: Post-ASCT treatments... yes or no?
Snip wrote:
>
> Oh my goodness... taking me to places I had no idea existed. I see I have more
> studying to do.
>
Snip, you should read the following article:
http://onlinelibrary.wiley.com/doi/10.1002/ajh.22237/full
This article is designed as continuing education for MD's and is written by one particular MD so it is the opinion of one practitioner. However based on what little I know (I'm a multiple myeloma patient, not a doctor) it appears to incorporate a lot of the most recent "best practices" in multiple myeloma diagnosis, risk mgmt, and treatment.
May I ask how your risk level was determined? Was it done using Durie/Salmon, ISS, mSMART, or gene expression profiling? My understanding is that an accurate risk assessment is essential to determine an appropriate treatment plan and that gene expression profiling has greater predictive power than the other three staging systems.
Pete N
>
> Oh my goodness... taking me to places I had no idea existed. I see I have more
> studying to do.
>
Snip, you should read the following article:
http://onlinelibrary.wiley.com/doi/10.1002/ajh.22237/full
This article is designed as continuing education for MD's and is written by one particular MD so it is the opinion of one practitioner. However based on what little I know (I'm a multiple myeloma patient, not a doctor) it appears to incorporate a lot of the most recent "best practices" in multiple myeloma diagnosis, risk mgmt, and treatment.
May I ask how your risk level was determined? Was it done using Durie/Salmon, ISS, mSMART, or gene expression profiling? My understanding is that an accurate risk assessment is essential to determine an appropriate treatment plan and that gene expression profiling has greater predictive power than the other three staging systems.
Pete N
-
Pete N - Name: Pete N
- Who do you know with myeloma?: me in south Florida
Re: Post-ASCT treatments... yes or no?
Pete N wrote:
> May I ask how your risk level was determined? Was it done using Durie/Salmon, ISS,
> mSMART, or gene expression profiling? My understanding is that an accurate risk
> assessment is essential to determine an appropriate treatment plan and that gene
> expression profiling has greater predictive power than the other three staging
> systems.
>
> Pete N
I don't actually know. My oncologist just casually mentioned it during our last visit... I will certainly be asking him more about this (and other things) in our next follow-up.
Thanks for that link... a serious amount of info in there!
> May I ask how your risk level was determined? Was it done using Durie/Salmon, ISS,
> mSMART, or gene expression profiling? My understanding is that an accurate risk
> assessment is essential to determine an appropriate treatment plan and that gene
> expression profiling has greater predictive power than the other three staging
> systems.
>
> Pete N
I don't actually know. My oncologist just casually mentioned it during our last visit... I will certainly be asking him more about this (and other things) in our next follow-up.
Thanks for that link... a serious amount of info in there!
-
Snip - Name: John Snippe
- Who do you know with myeloma?: me
- When were you/they diagnosed?: Jan, 2011
- Age at diagnosis: 56
Re: Post-ASCT treatments... yes or no?
Hi Pete, I am like you. Low risk multiple myeloma, dx early, successful ASCT in Sept. I have no credentials for advising you. What I can share is that my Doctor is one of the Rev maintenance guys. There was no doubt that he wanted me on Rev as soon as possible. He clearly discussed all options and educated me on side effects and the studies both pro and con. Dr. Bahlis is a multiple myeloma specialist at a respected BMT clinic here in Calgary. I consider him a world class multiple myeloma Doctor.
I have serious concerns on the continuing use of high toxicity drugs. I started Rev in Jan. and the side effects are minor at 15mg. for me. My take is that it is a good thing to keep putting the boots to multiple myeloma for awhile after the ASCT. I consider myself a multiple myeloma serial killer so I get a perverse pleasure picturing the little demons writhing in death's grip, but I wander. I don't want it getting up for round two any time soon. I hate Dex so Rev was an acceptable option. However I'm discussing the implications of eventually dropping it if my results remain stable for 6 months to a year.
So I voted yes for myself in the near future while discussing the long term protocol. I sometimes feel I'm making decisions on rocket science and planetary travel with a grade 6 education! It would be a lot funnier if the results weren't so important. I practice a life-long skill in these regards that is helping. I can make a decision and move on without excrutiating second guessing or regrets down the road.
I have serious concerns on the continuing use of high toxicity drugs. I started Rev in Jan. and the side effects are minor at 15mg. for me. My take is that it is a good thing to keep putting the boots to multiple myeloma for awhile after the ASCT. I consider myself a multiple myeloma serial killer so I get a perverse pleasure picturing the little demons writhing in death's grip, but I wander. I don't want it getting up for round two any time soon. I hate Dex so Rev was an acceptable option. However I'm discussing the implications of eventually dropping it if my results remain stable for 6 months to a year.
So I voted yes for myself in the near future while discussing the long term protocol. I sometimes feel I'm making decisions on rocket science and planetary travel with a grade 6 education! It would be a lot funnier if the results weren't so important. I practice a life-long skill in these regards that is helping. I can make a decision and move on without excrutiating second guessing or regrets down the road.
-
Canuck Bob - Name: Bob
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: Feb. 2011
- Age at diagnosis: 57
20 posts
• Page 2 of 2 • 1, 2
Return to Treatments & Side Effects