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SCT Referral - Decision Fiasco - Opinions Welcome
We currently live in the metro Nashville area. My husband was admitted via emergency room to one hospital - just due to location. From there, the oncology team began to work with his condition. Now, he is moving quickly towards SCT. We decided to get a second opinion with V and instantly felt comfortable with their team vs. the other hospital group. His oncologist stated that he felt our approach to go to another location for an opinion was "underhanded". He then went on to bash the team at V and promote his partners in the SCT. Last week, he said that my husband should wait until after the holidays, because he was going to be off for awhile anyway. Then, he said it was "no skin off of his nose" if we decide to go with the other group which seems to think my husband will be ready much sooner. My husband does not want any animosity with the oncologist and wants to make the right decision for HIS LIFE. We are wondering what is "in it for him" given that he so adamant that we stick with his team. Any ideas, opinions, etc?
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LadyLib - Name: LadyLib
- Who do you know with myeloma?: Spouse
- When were you/they diagnosed?: July 2013
- Age at diagnosis: 42
Re: SCT Referral - Decision Fiasco - Opinions Welcome
I wouldn't be comfortable with that kind of attitude and would be happy that the second opinion had raised the questions concerning him now, rather then later.
I am a little confused about "Admitted via emergency room" and "Quickly moving towards a SCT". The experience of a transplant on this forum seems uniform in chemo treatment, some success, and then a very measured move to a SCT in a facility with experience in the procedure.
My own experience was at Barnes- Jewish in St Louis that has several floors in a separate building dedicated to SCT's on a full time basis.
I am a little confused about "Admitted via emergency room" and "Quickly moving towards a SCT". The experience of a transplant on this forum seems uniform in chemo treatment, some success, and then a very measured move to a SCT in a facility with experience in the procedure.
My own experience was at Barnes- Jewish in St Louis that has several floors in a separate building dedicated to SCT's on a full time basis.
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Wayne K - Name: Wayne
- Who do you know with myeloma?: Myself, my sister who passed in '95
- When were you/they diagnosed?: 03/09
- Age at diagnosis: 70
Re: SCT Referral - Decision Fiasco - Opinions Welcome
Hi LadyLib, I have been reading your posts frequently. I have been amazed at how fast things are moving along for you as I am barely off the ground in getting treatment started and I learned of multiple myeloma at the beginning of August. I have a few issues with my oncologist and felt weird asking for a second opinion myself. My doctor didn't get hostile but I definitely felt a sense of disconnect afterwards . It was like she was washing her hands of me yet she said she was okay with it. I try to remind myself it's MY LIFE which is in danger and I have every right to question everything that is done. I believe it's important to trust your doctor and act as a team.
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kjpoppit - Name: Kim Nelson
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Sept. 19th, 2013
- Age at diagnosis: 47
Re: SCT Referral - Decision Fiasco - Opinions Welcome
Thanks for the responses. The emergency room visit was him being admitted for renal failure, which was later after several tests diagnosed as multiple myeloma. My husband was diagnosed 7/18 and started treatment immediately, they gave him chemo the first day while in the hospital and gave it for four days straight. He, then, started weekly treatments about a week later. He is concluding Cycle 3. If you saw him, you would not know that he is battling this, still very fit, working out and working his normal job. Its a blessing that he is doing everything to keep life business as usual. I think I am more worried than him.
He goes for SCT testing on November 15th. His light chains are within normal range now. They plan to do SCT towards the end of November. We will see...there is still a lot of verification/testing that needs to take place.
He goes for SCT testing on November 15th. His light chains are within normal range now. They plan to do SCT towards the end of November. We will see...there is still a lot of verification/testing that needs to take place.
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LadyLib - Name: LadyLib
- Who do you know with myeloma?: Spouse
- When were you/they diagnosed?: July 2013
- Age at diagnosis: 42
Re: SCT Referral - Decision Fiasco - Opinions Welcome
WayneK wrote:
I wouldn't be comfortable with that kind of attitude and would be happy that the second opinion had raised the questions concerning him now, rather then later.
I am a little confused about "Admitted via emergency room" and "Quickly moving towards a SCT". The experience of a transplant on this forum seems uniform in chemo treatment, some success, and then a very measured move to a SCT in a facility with experience in the procedure.
My own experience was at Barnes- Jewish in St Louis that has several floors in a separate building dedicated to SCT's on a full time basis.
[endquote]
Hi.
He is currently concluding his 3rd cycle of chemo. His light chains have moved down quickly - 518 at diagnosis, 73 after Cycle 1, and 28 after Cycle 2. Normal range on their scale is 3-19, so they definitely wanted to do 2 more rounds before SCT.
I wouldn't be comfortable with that kind of attitude and would be happy that the second opinion had raised the questions concerning him now, rather then later.
I am a little confused about "Admitted via emergency room" and "Quickly moving towards a SCT". The experience of a transplant on this forum seems uniform in chemo treatment, some success, and then a very measured move to a SCT in a facility with experience in the procedure.
My own experience was at Barnes- Jewish in St Louis that has several floors in a separate building dedicated to SCT's on a full time basis.
[endquote]
Hi.
He is currently concluding his 3rd cycle of chemo. His light chains have moved down quickly - 518 at diagnosis, 73 after Cycle 1, and 28 after Cycle 2. Normal range on their scale is 3-19, so they definitely wanted to do 2 more rounds before SCT.
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LadyLib - Name: LadyLib
- Who do you know with myeloma?: Spouse
- When were you/they diagnosed?: July 2013
- Age at diagnosis: 42
Re: SCT Referral - Decision Fiasco - Opinions Welcome
Dear LadyLib,
Go with the team with whom you are comfortable. No question.
Best of luck!
Pete V.
Go with the team with whom you are comfortable. No question.
Best of luck!
Pete V.
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Dr. Peter Voorhees - Name: Peter Voorhees, M.D.
Beacon Medical Advisor
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