Oh how do I love Solu-Medrol! As I posted before I finished up my 5th course on Saturday. Sunday (without meds) my symptoms were back in full force and these past couple days have been bad with weakness, burning and numbness. The doctors have prescribed 3 more days of Solu-Medrol and I am such a happier camper. As I sit in the comfort of my own home and watch the medicine drip I feel better. This stuff rocks.
My home nurse said some people do a 3-5 day course every month - forever. Not sure it that is the best possible solution and I am making time to follow up with the docs to see what else is out there. I am happy to know that there is at least a drug that works. Hopefully we can maybe find something a little less potent to take over the long haul but in the meantime I will continue my love affair with solu-medrol.
I wonder what my post in 3 days will be coming down from this - probably cursing it and wanting more. Oh well I guess I can only take things a day at a time.
A journal to keep everyone up to date with my Primary Refractory Hodgkin’s, radiation myelitis, and the little Z’s.
Followers
A QUICK TIMELINE
2006
January
Conceived our third child
Began to display symptoms of Hodgkin's - night sweats, itching, swelling, shortness of breath
March
Diagnosed with Hodgkin's and began 6 cycles of ABVD
Pregnant with cancer - what luck
August
Delivered Alex on August 28
PET Scan on August 31 - results that the ABVD did not reduce my tumor
re-diagnosed with Primary Refractory Hodgkin's
September
Consultation with NIH and Hopkins - recommended that I have 2 cycles of ICE then Stem Cell Transplant (SCT).
October
PET Scan results that I could get the SCT
November
Had another cycle of ICE while waiting for transplant (3rd) Began SCT process
December
Final cycle (4th) of ICE
Unable to mobilize stem cells and waiting for bone marrow harvest
2007
January
Harvest bone marrow from bones under twilight meds Admitted into hospital for SCT; new birthday Jan. 16
February
Released from hospital - 2 days later back with VOD
Final release on Feb. 14 (happy v-day)
April - May
Radiation treatments
June
PET scan to see if treatment & SCT worked - it did and I am cancer free!
July
Hospitalized for pneumonia and missed Charlotte Marie's 4th bday.
On oxygen support
August
Alex's first birthday - can you believe it!
September
Returned to work part time
Lee started kindergarten
October
Diagnosed with BOOP - out of work again
Back on oxygen support and steroids
Resigned from job to focus on health
2008
Jan.
1 year anniversary of SCT - still cancer free
April
Diagnosed with radiation myelitis
July/August
Lost moblity in lower extremities - wheelchair bound.
Using Avastin to try to stop progression of myelitis to my arms and hands
January
Conceived our third child
Began to display symptoms of Hodgkin's - night sweats, itching, swelling, shortness of breath
March
Diagnosed with Hodgkin's and began 6 cycles of ABVD
Pregnant with cancer - what luck
August
Delivered Alex on August 28
PET Scan on August 31 - results that the ABVD did not reduce my tumor
re-diagnosed with Primary Refractory Hodgkin's
September
Consultation with NIH and Hopkins - recommended that I have 2 cycles of ICE then Stem Cell Transplant (SCT).
October
PET Scan results that I could get the SCT
November
Had another cycle of ICE while waiting for transplant (3rd) Began SCT process
December
Final cycle (4th) of ICE
Unable to mobilize stem cells and waiting for bone marrow harvest
2007
January
Harvest bone marrow from bones under twilight meds Admitted into hospital for SCT; new birthday Jan. 16
February
Released from hospital - 2 days later back with VOD
Final release on Feb. 14 (happy v-day)
April - May
Radiation treatments
June
PET scan to see if treatment & SCT worked - it did and I am cancer free!
July
Hospitalized for pneumonia and missed Charlotte Marie's 4th bday.
On oxygen support
August
Alex's first birthday - can you believe it!
September
Returned to work part time
Lee started kindergarten
October
Diagnosed with BOOP - out of work again
Back on oxygen support and steroids
Resigned from job to focus on health
2008
Jan.
1 year anniversary of SCT - still cancer free
April
Diagnosed with radiation myelitis
July/August
Lost moblity in lower extremities - wheelchair bound.
Using Avastin to try to stop progression of myelitis to my arms and hands
Good Links
Maple
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