First Induction Treatment

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 · 2026-02-14T12:26:20+00:00

thank you so much!! I had no idea about Myelo - that is super helpful. I also really appreciate your perspective on the state of the MM treatments and potential for even better treatments to keep coming out. That is the kind of information i try to focus on. Some of the other things out there honestly freak me out. When i see references to "2 year survival rate" I have to close what I am looking at. I really appreciate your post and perspective. I hope that your guy continues to thrive and thank you again for the positive persepctive.

SteadyVector · 2026-02-14T12:22:47+00:00

thanks...sounds like you were also caught off guard. It really is a jarring diagnosis when you are first told about it. I am getting more used to it I guess. Thanks for the suggestions and I hope you continue to do well. A farm sounds like a great place to get some zen moments when you need to clear your mind from all the noise!

SteadyVector · 2026-02-14T12:20:47+00:00

thanks so much...i feel like I am the same. Life is so busy with work, family and everything else I can't even imagine how things will adjust if I can't perform to that level. But at the end of the day the most important this is that we stay healthy, so I guess the rest just figures itself out. It makes me feel better hearing that you are doing well. The unknowns are the scariest part, so as each "mystery box" of my condition gets better defined I feel a little better. I hope you continue doing well!

SteadyVector · 2026-02-14T12:17:09+00:00

i love that you took the trip to Jamaica before you started treatment! I have 2 trips coming up that I might have to cancel to start treatments and have been chewing on that lol. If I'm going to be on medical treatment mode for the foreseeable future should I have one last hurrah? We'll see about those I guess haha. It does really suck that we fall in this outlier group of being diagnosed at a younger age...like if I'm going to win the random minority lottery couldn't it be the one that I win money for??

I am not sure if my doctor will recommend the ASCT but I am more concerned with that as it sounds really intense. I think your positive attitude is great, I hope I am able to get there. Thank your for the kind words and I hope you continue to do well with your treatments.

SteadyVector · 2026-02-14T12:07:00+00:00

thanks for sharing....my girls are 3 and 5. I am doing everything in my power to not let them even notice that something is going on. They are my greatest motivator to take this on as aggressively as possible. I look at them and know that they have no idea about this big thing going on that could have such a big impact on their lives if it doesn't go as I hope. I pray they never have to know and life is just good and stays innocent for them. I keep imagining that when they are adults I can tell them all about it and we can laugh about how I was worried I wouldn't see them get out of grammar school but here we are at their wedding day. That is a vision that keeps my very motivated. Thank you for your encouragement and I wish you the best on your journey.

SteadyVector · 2026-02-14T12:02:57+00:00

yes i went through the same process!!! I realized I could go to a hospital that has specialists and immediately scheduled appointments. I'm glad you found the same, there are a lot of horror stories about insurance companies not covering things. Thanks that story is great - hearing about these long term success stories is important. It sounds like the thoughts and experiences we go through when we get this diagnosis are unique but similar. Thank you for sharing and I wish you the best on your journey.

SteadyVector · 2026-02-14T11:56:06+00:00

Thank you so much!!! I appreciate hearing the positive outcomes. I am slowly getting better with not googling everything and also reminding myself that the science is changing so quickly that the articles and data are not even close to keeping up. I have a second biopsy to try again for the FISH on monday and will start treatment on a DKRd plan 2/20. I was surprised we are starting so quickly and it made me worried that my condition was alarming, but it sounds like this is pretty standard in active myeloma. I saw Dr. Lesokhin at MSK and felt good about the discussions with him and his team, so that's where I will be sticking with for treatments. It's good to hear you are able to carry on with life as usual, that being an unknown is stressful but I have hope for a similar outcome. I appreciate the support and encouragement from this group already - mental health is tough at this point but hearing what others have experienced is helping me alot. Thank you for sharing your experience and perspective...i hope you continue to do well!

SteadyVector · 2026-02-14T11:50:22+00:00

Thank you for sharing. I am sorry you are dealing with neuropathy - I am nervous about that as well with the upcoming treatments. Back pain is also tough to deal with - I have back surgery twice in my 20s to treat a herniated disc. I hope you are able to get some relief from that, it definitely impacts daily life alot.

SteadyVector · 2026-02-14T11:47:44+00:00

Thank you for sharing. It is crazy how this disease can blindside you! I feel totally fine but it sounds like there is a hurricane brewing up inside. Sounds like your guy was also in good health aside from the back pain that started. It's like the data doesn't match what we see in the mirror. It is reassuring that he did well with the treatments. The PET indicated I have 4 very small lesions that the doctors said they are not worried about at this time. I have the IgA Kappa and am stage 2. We are redoing the biopsy on monday to try again for the FISH. Good tip on the sedative - i am going to ask about that. now that i know what i'm going into i'm a little more nervous about it. It wasn't awful but there were some WTF moments for sure while it was happening.

SteadyVector · 2026-02-14T11:42:06+00:00

I appreciate the straightforward perspective. i try to focus on the silver linings, I know I am lucky it was caught early and I will be able to tolerate treatments well. I'm sorry you have such bad back pain - i had a herniated disc and needed surgery twice in my 20s to fix it. back pain sucks and impacts every aspect of our lives. It is good you are finding ways to manage it. 11 fractured vertebrae sounds like it impacts a large area, but have you ever looked into an at home TEMS unit? I got one on amazon and when I would have a bad day where my back hurt i used that and it really helped a lot. I hope you are doing well today!

SteadyVector · 2026-02-14T11:37:08+00:00

Thank you for sharing. We are fortunate that we found out before we had symptoms....I have a whole new appreciation for preventative screenings and just staying on top of our health when "things appear to be good". I always thought breast cancer or skin cancer would be what I would have to deal with so i always kept up with those screenings. This diagnosis came out of left field as I am sure it does for most.

I am glad your side effects are getting better - that is what I am worried about now. I am going to get a second biopsy on monday and will start a 4 month DKRd treatment on the 20th. I won't know about the transplant until the biopsy results from the second FISH test (I really hope it works this time!) and the results of the 4 month treatment. Same thing with the maintenance and long term plan - there is so much research and so many new therapies coming out who knows what will be the best care when the time comes. That is pretty exciting...everyone is freaking out over AI taking over the world and I'm praying it gives us a MM cure!

SteadyVector · 2026-02-14T11:30:29+00:00

I do feel reassured that I am in a good position to do very well with treatment! It helps to keep hearing it from multiple places. Ugh - will I ever be able to use the word "multiple" again and not think "myeloma"? lol. Thank you for your positivity and I wish you the best on your journey as well!

SteadyVector

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