Hello, I thought I'd share me & my dad's journey for the benefit of other caregivers/new patients out there. We've come a long way. Currently we are waiting for the call from the Bone Marrow Transpant unit to admit us for the Melphalan+ Auto stem cell transplant.
Everyones journey is completely different & there are varying options available. My post only addresses my dad's experience.
I have found this forum very helpful & informative-HUGE THANKS to the physician contributors, patients & caregivers.
Major Milestones: 1. Diagnosis & identify risk level 2. Start induction therapy (combination of any of these drugs (only list what my dad did) Revlimid (pills) + Dexamethasone (pills once a week) Zometa (bone strengthener IV once/month). 3. Reassess M spike dad went from 3 to .3 in 4 months added 1 cycle of Velcade (subcutaneous injection) m spike remained at .3. Hemoglobin increased to 12.5! (hadnt been that "high" for years!)
4. Work up for Auto Stem Cell transplant: 1. Pulmonary function test 2. MUGA & EKG, 3. Repeat bone marrow biopsy. Dad was clear 4. Skeletal scan-dad had no lesion progression (thank you Zometa & Rev Dex) 5. Many tubes of blood drawn, repeat 24 hr urine
5. Consult appts; cardiology to discuss insertion of central venous catheter insertion & care, orient to stem cell collection area, meet pharmacist, care coordinators, orient to unit...
6. Start injections of GCSF-this stimulates the marrow to kick stem cells into bloodstream. Dad had unremarkable side effects-he took Tylenol to minimize bone aches. (if this drug doesn't work-they have more potent-Mobozil)
7. Cardiology place the Central Venous Access Device day before stem cell collection: Dad was understandably super anxious. Outpatient procedure-very routine. Went great.
8. Stem cell collection! Hooked up to apheresis machine to catheter. The worst pat of this is you find out the next morning how many you get-anticipation/anxiety! He collected about 6 million stem cells over 3 days. Each day we were there about 6 hours. Dad's job was to lay there & keep busy-!!
Here we are... Awaiting the call for admit!-They say his treatment will be outpatient.
If any of you can help me by offering survival tips for the final phase of treatment, please do! I am nervous, anxious, not sure what to expect!
Thank you!
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