12/13 – Mah Nishtanah – 4 Questions

Yesterday Dr. J came upstairs at Mt. Sinai and gave me a visit at treatment.

BOTTOM LINE: Yes – the disease is progressing.

He is NOT changing a thing however. Regimen will stay the same. Off to Mexico on the 18th through the 27th. Go enjoy yourself. We are so close to transplant that it wouldn’t make sense to change anything anyway even if he wanted to. He said that it wasn’t a big enough progression to warrant a change yet anyway. If I wasn’t going to transplant so soon he would probably track this next cycle and then make a change if appropriate.

I did persist a bit and say that I didn’t think a 30% increase in Kappa Chain was insignificant and he shrugged his shoulders. Draw your own interpretation on that one.

So – I have a higher M Spike, higher Kappa Chain and IGg is still normal. There is a slight M Spike in the urine for the first time in six months as well.

He said that once I get through transplant I will be in complete remission anyway. The Melphalan (high dose chemo given day before stem cell transplant) will kill all the myeloma cells – along with everything else! The big question is how long that remission will last. That we don’t know. After the transplant is done we will redo all the baseline tests – bone marrow biopsy, test for residual disease etc. That will give us a better idea of where we stand. I think that is at 100 days post transplant.

I asked him 4 basic questions (MA NISHTANAH) during our visit. On Passover, in the Jewish religion, we ask four questions – MA NISHTANAH – WHAT HAS CHANGED? WHY IS THIS DIFFERENT?

1. Is the disease progressing? ANSWER: YES
2. Should I be on a lower dose of meds? I have read articles that some patients have better response to lower dose Carfilzomib. ANSWER: NOT CHANGING ANYTHING NOW
3. Should I order more Revlimid ( maybe a lower dose) to take to Mexico to keep the disease progression at bay? ANSWER: NO. TAKE YOUR LAST REVLIMID ON THIS CYCLE ON FRIDAY 12/21. NEED TO BE “CLEAN” GOING INTO TRANSPLANT
4. Will I need a 2nd transplant right away (back to back or tandem transplants are one protocol used in Myeloma treatment) ANSWER: DONT THINK SO. OUTSIDE SHOT. LESS THAN 20% CHANCE.

BONUS QUESTION: How was the conference? Are we close to finding a cure? HE SMIRKED. I BELIEVE – AND HE SAID – HE IS CONFIDENT. LOTS OF GREAT NEW INFORMATION. NOW HE NEEDS TO PUT TOGETHER AT MT. SINAI TO BEGIN WORKING ON IT.

WHAT DOES IT ALL MEAN? I am not worried so you all should not be. I haven’t worried much about this from the beginning so I am not going to start now.

I have much work to do over the next few days – I have money to raise for work. I need to get to Victor’s basketball ready for a game Sunday and then I have 2 teams in the fantasy football semi finals starting tonight. Family – you ought to hope I lose otherwise I will be spending next Sunday looking for a sports bar in Mexico! Big money on the line.

Love you all – as my beautiful wife Helene says – it’s time for the next phase. TRANSPLANT. Cancer is fighting hard but I have more arrows in the quiver to fight it. AND – coming out of the ASH (hematology) conference last week – we are adding more and more quickly.

Off to two more treatment sessions – Monday and Tuesday – then Mexico Wednesday. When I return? The journey to remission (however long lasting) begins January 6th.

#bradstrong

6 responses to “12/13 – Mah Nishtanah – 4 Questions

  1. I like the bonus question, and I like Dr J confident ways he answers your questions. You know the best medicine? Relaxing and enjoying with your family in Mexico. Enjoy, your body needs a break from stress and just enjoy! Love ya!

  2. A mortal man would be crushed ,are u not telling us something???? You renew my spirit ever time I read the blog. I have friends who are fighting cancer as you are, I tell them about your amazing strength as you fight through this. I think it helps them as well. So I hope you know how many people you inspire. As always thoughts & prayers are with you. Soak up the sun and enjoy your beautiful family. Jeffrey joins me in sending love& hugs XXOO Joni

  3. Hi Brad,
    We have never met but I fell across your blog this summer after my 42 year old husband was diagnosed with Multiple Myeloma in May 2013. You have been such an inspiration to me with your silver linings blog and I check it weekly to see how you and your family are doing. We also have 2 kids though both are girls- 11 & 13 and it has been difficult for them to understand what is happening to Daddy. My husband been thru VRD drug therapy & several rounds of radiation on a tumor in his arm.

    I really enjoyed your post about the Dex and the baseball game with your other MM friends. So true. 🙂 We also appreciated your post about Zometa — my husband had gotten it the same day as you did and was also feeling yucky the next day. It apparently is tougher on men with MM than on the women with MM who I have talked with about it.

    My husband is in the hospital now (we live in Virginia) as he had his stem cell transplant yesterday after receiving the Malphalan on Tuesday. It has been a surreal experience but he’s doing OK at this point. Our kids are coming to see him for the 1st time since hosptalization this afternoon.

    I am glad to hear your Dr attended the New Orleans symposium. We received an email from the International Myeloma group about a free teleconference on this gene therapy. Here is a link to that. https://online.myeloma.org/NetCommunity/BOA2013?srctid=1&erid=3737732&trid=bc15baef-27da-424b-83de-838d9a336532 You will likely be in the hospital when this is broadcast in mid-January but perhaps your wife or friends can listen to it for you.

    Enjoy your holidays & Mexico trip with your family! That will be the best medicine for you. It is so nice to feel close connection to family before the transplant begins. Thank you again for all of your inspirational blogs!! I will continue to follow your progress.

  4. Enjoy Mexico! Chips and salsa. Beer and tequila. (Try the medicinal worm.). Walks on the beach. Hanging out with your best friend and kids. That’s good living bro.

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