ONC Final Diagnostic: Reclassified Me To HIGH Risk SMM Based On FISH Test, Dup(1q) & Gains (5,9,15), Onc Says Dup 1q=xtra Chromosome!
1. Wants me to start REVLIMID now! Says Dup 1q xtra chromosome makes SMM more aggressive
2. 21 days on, 7 days off
3. Side effects, Leah’s swelling, diarrhea (amodium) blood clots (aspirin).
4. Onc Says revlimid will suppress it to prevent tru myeloma?
5. Statistically now I am higher risk of turning SMM into tru bad myeloma bec of xtra bad chromosome!
6. 25 mg per day.
7. I requested a 2nd opinion and referral to a hematoligist
8. They wanted me to sign up today to process the prescription… read more
Don’t send to India or any foreign country except Canada or England for any drug. I used to manufacturer vaccines, and worked in a quality control in the USA. I saw many foreign manufacturing plants for other companies and I am telling you some look similar to the squaller we see on TV these days and some look just like those in the USA. The trouble is you don’t know which unless you go there and purchase it. I would never buy any vaccine from any other country than USA, Canada or UK.
Dan,
The cost you were quoted sounds high. The generic cost for 21 days is $15,160 (per the specialty pharmacy I use). If you have drug insurance your cost will be considerably less. If you have Medicare, your total out of pocket cost for all of your drugs is $8,000 for 2024, and $2,000 for 2025.
We all understand the initial shock of the diagnosis. Do your grieving, get through that process, then determine to have a positive attitude and fight MM with all your might.
The good news is, you got an early diagnosis. This greatly improves your odds of living with MM for a long time. Hopefully, you will live to see the cure developed.
You are in my prayers.
I would go for a second opinion for reassurance and to verify the first opinion. I would start the Revlimid. Hoping you only need to take it for a year or so. I'm glad they caught yours early. It's much easier to treat.
Dan,
Get out of the Advantage plan, and get traditional Medicare with a supplement plan, and a Part D drug plan. The Part D has a maximum out of pocket cap of $2,000 for participant spend in 2025. If your total drug spend for the year is $200,000, you pay $2,000 and the insurer pays $198,000.
My first day did cost big bucks, but after that the cost went way down.. Talk to your Dr.
Final Diagnostic Based On This FISH Addendum. See Bottom On Page ADDENDUM 8/15/24
Can Someone Explain To Me What This Fish Report Means :cells Positive For Igh T(11:14), CKS1b(1q) Addition(lowlevel,+1extrasignal),p53 Delit
Can Someone Tell Me What Factors Make Multiple Myeloma High Risk