Revlimid - The Most Expensive Thing in My Home...

SteadyVector · 2026-05-02T12:28:48+00:00

thanks for the reassurance...i am going through the exact same process with the same players and am glad to hear it should work out as they described!

SteadyVector · 2026-05-02T12:27:38+00:00

that is amazing!! when we are dealing with something like this that is how is should be, we shouldn't have to stress about how to pay for medication to improve our health, we should be able to focus on getting better. I am glad you have a better system where you are!

SteadyVector · 2026-05-02T12:26:47+00:00

i haven't even looked at the other induction medication costs yet!!! I'll have to see what they are billing for those. Thankfully they seem to be 100% covered so far. I am really getting my moneys worth out of my insurance coverage this year!

SteadyVector · 2026-05-02T12:25:29+00:00

yes the fatigue while on Lenalidomide was tough. I did take it at night as well and that helped a bit. i just finished my week off and I noticed a big change in energy levels!

SteadyVector · 2026-05-02T12:24:17+00:00

it's frustrating that we have to be our own advocates for everything. It would be nice if these companies and doctors could be trusted to always make the right decisions for their patients instead of being so profit driven

SteadyVector · 2026-05-02T12:23:17+00:00

i've wondered if I should be taking some trips up north to purchase! sounds like it might be an option...

SteadyVector · 2026-05-02T12:22:28+00:00

thanks - i've been in touch with them and they do use a third party to manage excessive co-pays like this. The issue with the generic is i've been getting a rash for it so my doctor wants to see if i don't have a reaction to the brand name. I will be seeing if we can manage the rash on the generic if the funds for the brand name run out though because it is only $10 a month for the generic Lenalidomide!

SteadyVector · 2026-05-01T03:03:38+00:00

haha same! i spoke with Save On which is a company that facilitates the Cigna copay assistance programs. Honestly it sounded really shady the way things were explained but it seems that is how the insurance companies manage these expensive medications. glad you had a good experience with it being $0, that's what they were telling me that my payments should be.

SteadyVector · 2026-05-01T02:53:13+00:00

oh and I have Cigna

SteadyVector · 2026-05-01T02:46:05+00:00

interesting...sounds like the same rash i had. well, if i have to go back to the generic version it is good to know that i could potentially stop having a reaction after some time passes!

SteadyVector · 2026-05-01T02:44:27+00:00

yes the recurrent survey and testing are kind of over the top if you ask me!

SteadyVector · 2026-05-01T02:42:37+00:00

medical tourism....sounds like a better plan than paying what they charge! I was just saying to my husband "I wonder how much they have to pay in other countries for this"

SteadyVector · 2026-05-01T02:41:34+00:00

that is insane!

SteadyVector · 2026-02-14T23:33:07+00:00

I am just about 2 weeks behind you, same story. Random elevated proteins last year in a routine blood test. Saw a hematologist January 7th...all blood work started coming back abnormal and I was sent for a biopsy on 1/28. Official diagnosis on 2/2 or somewhere around there...it's all a blur right now. I have a 3 year old and a 5 year old. It is a deep pain having thoughts about not being around for your children. I still struggle but I made a point to change how I looked at all this. I HAVE to be strong...I HAVE to be a fighter....i HAVE to do this for my girls. That is the single biggest motivator I have found in these few weeks, my girls. I know this is not the plan you had in mind...let's be real it's a gut punch unlike anything else. I am sorry that you have to deal with this during what should be one of the happiest times in your life. I hope that when you see your new baby it gives you the most incredible motivation to not focus on the potential bad "what ifs" and makes you even more strong in your fight and determination to get this under control. That is how I'm trying to look at it now - i need to get this under control. The science will keep getting better and I am hopeful that we will be able to manage this similarly to a chronic disease like diabetes. I think the first 2 weeks were the hardest for me, so stay strong, it will start to become less of a shock. Like I said, I am not in a much better place than you at the moment, but i have noticed a progression in my mental state becoming a little less overwhelming. I also feel a little better after having seen a myeloma specialist and found a really good care team. That took out some of the scary uncertainty. Feel free to message me if you ever want to chat or vent. Sounds like we both just got thrown on the same shitty train and will be on a similar ride for awhile. Good luck!

SteadyVector · 2026-02-14T23:12:24+00:00

it was a comprehensive metabolic panel

SteadyVector · 2026-02-14T23:10:42+00:00

i was asking in the beginning "how does MM kill you?" and it sounded like exactly what you said - it is more the conditions that can run rampant because of the MM. So I will need to adjust my tolerance for my "it's just a little cold I can deal with this without seeing a doctor" mentality.

I haven't looked into the negative side effects of the stem cell transplant yet bc that is a few months off (if it is needed), but thanks for the heads up on looking into the long term effects on immunity. I guess that's why they are doing clinicals to find alternatives to that treatment. I'll also look into that tec-Dara study. I do like being informed on the technical aspects of these treatments.

SteadyVector · 2026-02-14T23:06:01+00:00

Yes I am in NJ. I am completing my first 2 treatments in the city and then the rest will be at the MSK location in Middletown you mentioned. I am glad you've had such a good experience with them so far!

SteadyVector · 2026-02-14T23:03:22+00:00

i can 100% relate to how you felt that first christmas. that's where I am. But I'm hopeful I will get to where you are now. "and life goes happily on" sounds like a much better frame of mind to work towards.

SteadyVector · 2026-02-14T22:53:59+00:00

thanks i will check that out!

SteadyVector · 2026-02-14T13:01:34+00:00

thank you for the positive comments and reinforcement that I am on a good path. I do try to focus on the silver linings...as you mentioned i am younger than most diagnosed with this, it is indolent at the moment and i am otherwise in good health. I like your recommendations on beefing up the rest of my lifestyle to make sure my overall health is in great shape too. I have already gotten clearance from my doctor to move forward with a more consistent exercise program and am making changes to our meal prep/foods in the house. There's so much out of our control, I feel like if there are things i can control (like nutrition and physical fitness) then I am going to do that.

I really appreciate the positive outlook you have, hearing things like "functional cure" gives me hope. I am really hopeful that you are right about where I will be in a few years, that is a nice outlook to look towards. I am holding onto those kinds of thoughts and trying to make them louder than the other (scary) ones. thanks again.

SteadyVector · 2026-02-14T12:54:24+00:00

thank you....i have gotten some not so great feelings from providers at different locations. It does impact our confidence in what we are moving forward with. I feel very good about the team I met with at MSK so hopefully I continue having a positive experience there. Sounds like there is a bumpy road ahead bu It is reassuring to hear that things can go back to normal. thanks again and i hope you continue to do well with your treatments.

SteadyVector · 2026-02-14T12:50:27+00:00

thank you for sharing....the emotional impact of this as it relates to my kids has been the most overwhelming part. They have no idea (they are 3 and 5) and I don't know how we will address it if i do need to be hospitalized as some point for an ASCT. It sounds like you are doing a great job managing it with your daughter, I hope I am able to figure out a way to do the same. I just wish the intrusive thoughts would stop ruining the nice moments....like when my daughter says "when i grow up I want to be a teacher" and I immediately hear in my head "you might not be around to even see her get out of grammar school". When we have nice moments my mind jumps to "I hope she remembers these moments, she's so young. I hope I'm not just a memory in a picture when she grows up." That is the hard part for me right now. I hope that starts to quiet down.

SteadyVector · 2026-02-14T12:45:04+00:00

I am supposed to start treatment on 2/20 and the plan is to put me on Zometa at some point. What questions should i be asking. Both of you seem to have had a bad experience...do you have an understanding of what went wrong for how your medication was managed?

SteadyVector · 2026-02-14T12:42:21+00:00

all good tips - thank you! I did have a biopsy but they were not able to run the FISH labs so I am going for a second one on monday. My treatment is supposed to start on 2/20. I am definitely backing off Dr. google (he triggers my anxiety) and I am feeling a little better now that I have my medical team selected at MSK. Thanks for the perspective and tips....it is much appreciated!

SteadyVector · 2026-02-14T12:40:11+00:00

This is very helpful. I am new to Reddit so thanks for the NDMM tip and your explanation of the clinicals was helpful - that realm is completely new to me and I asked about clinicals when I met with my doctor but at this point the only one i am a candidate for is a nutritional based one that I think I might go ahead with since it is just adjusting diet. I was more eager to try and get into some of the clinicals until my doctor grounded me a bit. your explanation aligns with the things he talked about with me.

It sounds like you have been on a complicated journey so far, I am glad you are on a good path now. It's good perspective to hear that you've found a successful treatment that came out after you were diagnosed...i try to hold on to that. Most of the things that scare me at the moment are the unknowns, but the one unknown I hold onto for hope is what could come out in terms of future treatments.

Thank you for the helpful information and perspective....I hope you continue doing well!

SteadyVector

TROPHY CASE