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Re: Newly Diagnosed 43yr old with 8.9 M-Spike

by ninja performance on Fri Dec 16, 2011 11:52 pm

Found out test results from back when I was diagnosed that I was not told until now, by my new Dr at John Hopkins, Dr Huff.

I do not have chromosome 13 deletion, I do not have translocation 11;14, and I do not have any chromosome abnormalities.

She didn't have all the test results from the original tests, but from what she had she said I was light chain Lambda and probably Igg

-Chris

ninja performance
Name: Chris Hill
Who do you know with myeloma?: Self
When were you/they diagnosed?: 08/04/2011
Age at diagnosis: 43

Re: Newly Diagnosed 43yr old with 8.9 M-Spike

by suzierose on Sat Dec 17, 2011 2:08 am

That's great news Chris!

Between your supplements, outstanding lab result status, and now no other negative prognositic
factors...I'd say you are truly blessed and what better time of year to receive such wonderful news.

Happy Holidays!!

suzierose
Name: suzierose
When were you/they diagnosed?: 2 sept 2011

Re: Newly Diagnosed 43yr old with 8.9 M-Spike

by ninja performance on Wed Dec 21, 2011 10:37 am

Had blood tests done last week at Hopkins. Off chemo for 1 month 17 days with no maintenance drugs.
Got results yesterday.
M-Spike is still at 0.1 (hasn't moved which is GREAT!)
HGB at 16
WBC and kidney/liver functions all perfect.

Just waiting for all the paperwork etc to get the stem cell transplant going and get into full remission!

-Chris

ninja performance
Name: Chris Hill
Who do you know with myeloma?: Self
When were you/they diagnosed?: 08/04/2011
Age at diagnosis: 43

Re: Newly Diagnosed 43yr old with 8.9 M-Spike

by Dr. Ken Shain on Thu Dec 22, 2011 10:04 am

Congrats and good luck.
Enjoy your Holidays

Dr. Ken Shain
Name: Ken Shain, M.D., Ph.D.
Beacon Medical Advisor

Re: Newly Diagnosed 43yr old with 8.9 M-Spike

by ninja performance on Thu Jan 05, 2012 12:23 pm

Looks like I am geting my SCT at Johns Hopkins. Go in for pre testing next week and SCT starts 1/27.

I am also participating in the clinical trail they have running there. Lucky since only 32 people are going to be in it. The trail is
"Randomized Trial of Activated Marrow Infiltrating Lymphocytes
alone or in Conjunction with an Allogeneic GM-CSF-based Myeloma
Cellular Vaccine in the Autologous Transplant Setting in Multiple
Myeloma"

Anything to A. Help my possible outcome B. Help research for future treatment regimens.

Can't wait!

-Chris

ninja performance
Name: Chris Hill
Who do you know with myeloma?: Self
When were you/they diagnosed?: 08/04/2011
Age at diagnosis: 43

Re: Newly Diagnosed 43yr old with 8.9 M-Spike

by Jenn on Thu Jan 05, 2012 1:01 pm

Chris -
What wonderful, positive news. It sounds like you are doing fantastic. I look forward to reading all your postings about the sct. I have no doubt that you will do well with it.

Jenn
Name: Jenn
Who do you know with myeloma?: Husband
When were you/they diagnosed?: September 2011
Age at diagnosis: 45

Re: Newly Diagnosed 43yr old with 8.9 M-Spike

by Mark on Thu Jan 05, 2012 3:48 pm

Chris,

Great news. Keep us up to date on that Clinical trial. I did an Allogeneic transplant this past year, so this type of research interests me. I had seen this Clinical trial and would have been interested if the timing would have worked out. I really believe the approach taken in this Clinical Trial is the wave of the future. Best of luck for a very long remission.

Mark

Mark

Re: Newly Diagnosed 43yr old with 8.9 M-Spike

by letsbeatthis on Mon Jan 09, 2012 3:57 pm

Chris,

Way to go!!! What great news to go from 8.9 to 0.1.
Good luck on the ASCT.

This thread is very interesting since I'm looking for supplements that can help my husband.
So far, he went from 6.8 to 0.4. But is scheduled for an ASCT.

Have you heard or has anyone here heard about Green Barley?

Just curious...

letsbeatthis

Re: Newly Diagnosed 43yr old with 8.9 M-Spike

by ninja performance on Sat Jan 21, 2012 12:25 pm

I have been accepted into the Activated Marrow Infiltrating Lymphocytes trial.
I had blood drawn yesterday to test for HTLV1 and HTLV2, retroviruses that are very rare. I need to be tested for them due to the Lymphocyte trial. If I had either one they would be grown in large amounts and given back to me during the trial so they need to make sure I don't have them. takes a week to get results.

They also did a normal CBC and CMP.
Been off therapy since early November 2011 waiting for ASCT. Should be getting ASCT in about 6 weeks. I will be going to Hopkins end of January for the bone marrow collection (8 tablespoons) so they can grow the lymphocytes in the lab for 5 weeks before giving them back to me when they give me back my stem cells.

Here is my blood as of yesterday. Happy with most of it.
HGB 14.8
Platelet 145 (not real happy about that, I have seen 230 even on chemo on off chemo week)
WBC 7.4
RBC 4.67 (was 4.5 a month ago and as low as 2.1 when diagnosed 8/2011)
HCT 44
MCV 94
MCH 32
RDW 12.1
MCHC 34
MPV 9.0
Neutrophils 71
Lymph 21
Monocytes 8
Eosinophils 0
Basophils 0
Abs Lymph 1.5
Abs Neut 5.3
Abs Mono .6

Albumin 4.1
Total Protein 6.0
Calcium 9.3
Potasium 4.3
Sodium 141
Chloride 104
C02 32
Anion Gap 5
Glucose 95
BUN 15
Creatinine .78
Est GFR Non African American >59

-Chris

ninja performance
Name: Chris Hill
Who do you know with myeloma?: Self
When were you/they diagnosed?: 08/04/2011
Age at diagnosis: 43

Re: Newly Diagnosed 43yr old with 8.9 M-Spike

by Art on Sat Feb 11, 2012 6:08 pm

Hi Chris.
Glad to hear you are doing well. Good luck with your SCT. How much Curcumin and Spirulina are you taking. I mean total dosage in mg. The Curcumin I just bought is 1000mg 95%. I plan on taking 1 per day.
Thanks
Art

Art
Name: Art
Who do you know with myeloma?: Self
When were you/they diagnosed?: 12/2011
Age at diagnosis: 40

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