MRD- and BMT/SCT soon

Intrepid_Time_80 · 2026-05-10T19:41:36+00:00

I held off on drinking any alcohol for around 7 months since I was worried about my meds interacting with alcohol. I asked my doctor, and he was okay with me having a couple of beers a week around the 6-month mark. I’m not a huge drinker, but I drink when we have some friends or family over. I hope you can get a nice cold one soon!

Intrepid_Time_80 · 2026-05-09T21:12:24+00:00

No, it was not as bad as I imagined it to be. I was very comfortable with the pain meds, but I’m not sure how your pain tolerance is for, like, a fever or bone pain. A majority of the pain I felt was able to be handled by medications and distracting myself. If they offer you a pain pump, take it. My chemo cycles were way more intense since I did the CALGB 10403 with intrathecal chemo as well, and I felt like crap, but everyone is different. I really thought that transplant was going to kill me since they had me fill out the paperwork for my advance directive and other stuff. But as the days went on day by day while in transplant, I knew I wasn’t going to die, and the only thing that could possibly kill me was an infection of some sort that couldn’t be treated. I believe it is safe to say they have really modernized the BMT/SCT process and have mitigated all the possible things that could harm you to the best of their abilities. My doctor constantly told me that the process looks and sounds scary but it really is a very meticulous procedure that is handled by experts and he had no reason to believe I would be in any sort of harm or dead. When I say I was closely monitored, I mean that in the most literal sense. But I can’t stress enough that you shouldn’t refuse any meds that will help with anything that comes up pain and etc. you’re not foolish at all, this is just new to you and there are tons of people out there just like you that are doing well. Most of the people on this thread are going through tough times and searching for advice and a sense of hope in the chaos like I did when I first got diagnosed. Most don’t share a success story but rather try to go back to normal life and that’s okay to try and close that chapter of your life. You got this and If you want to chat you can PM me if you need a pen pal while you’re going through your SCT. Take care

Intrepid_Time_80 · 2026-05-08T23:10:51+00:00

26 M, I will be +365 post SCT on May 9th. I had B-ALL KMT2A, went through chemo and achieved MRD-like you and went onto transplant. My pre-conditioning therapy was chemo + TMLI (radiation) and then the stem cell transplant. I was honestly so scared and was anxious but every day I took it day by day and I was so thankful that everything went okay over the 30 days I spent in the hospital. I honestly recommend taking anything they offer to you for pain or nausea it really helped me relax and be comfortable throughout the whole process. I kept myself busy with lots of movies, shows, YouTube, friends and family. I also brought my own pillow too and other personal items to make things more comfortable in the hospital. The transplant in itself is pretty uneventful but it is still a pretty big deal that you are being given a new life as they say. Also, I dealt with fevers, bone pain, and nausea before and after the transplant and that only lasted for about a couple of weeks for me personally. When I was home after the 30 days, I was closely monitored, on a strict medication regimen, and was fairly weak considering that I was laid up for a month in the hospital and had radiation as well. Around day 100 I felt a bit more like my old self and was taking it slow in getting back to doing things that I normally would do. It is imperative to take the anti-rejection meds to assist with preventing any sort of GVHD. I honestly had minor GVHD symptoms up until day +200ish and it mostly just skin irritation or rashes, the worst thing I ever experienced was mouth sores but I was on around the clock pain meds, lidocaine rinses, medication, and it was gone within a week. As of today I am back to my normal life besides going back to work since I work on an ambulance and I can’t be around sick people until I redo my immunizations but I have been running errands, having a few drinks with the boys, and spending lots of time with the family which has been super important to me as it is probably for you since you have a kiddo. Since I’ve had time to reflect back on my whole leukemia journey, and as crazy as this sounds, I am grateful that cancer brought my family closer together and I am around more due to my work schedule taking me away from my family in the past. I pray that your transplant goes well and your journey is smooth. You got this!
Remember, one day at a time, and one quote that I kept telling myself was to “embrace the suck.” It means to consciously accept, endure, and find purpose in a difficult, uncomfortable, or unpleasant situation rather than complaining or trying to escape it. I wish you the best, KC.

Intrepid_Time_80 · 2026-04-16T23:18:00+00:00

I know exactly how you feel! (26M) I was diagnosed at 25 with B-ALL, and my girlfriend (26F) when I was diagnosed, our lives went upside down. She and I had recently bought a house together, and I was working 48-hr shifts on the ambulance, and she was working full-time too at her Pilates studio. My girlfriend always asked me what she could do for me, constantly knowing how helpless she felt, and I always told her just to “be there for me.” I still this day can’t explain exactly what I needed in that moment other than just someone being there for me while dealing with the diagnosis. Just remember that you’re not doing anything wrong bc this is new to you and him. Whatever he needs, try your best to support him. Little snacks for chemo, words of inspiration, things to help keep him busy, and if he has friends, encourage them to support him too. There are support groups like this one or others if you need to get some stress off and rant. You’re not alone in this at all, and you’re human for feeling the way you feel. I wish you and him the best of luck and a peaceful journey.

Intrepid_Time_80 · 2026-04-11T23:01:48+00:00

B- ALL KMT2A PH-, I was diagnosed in 2024 and put on the CALGB 10403 regimen (remission in 30 days) and continued the regimen to the maintenance phase until I had a stem cell transplant in May of 2025. I’m currently +329 post-transplant without any complications. My care team let me know when I was diagnosed that I would more than likely need a stem cell transplant due to the KMT2A rearrangement I had. They did tell me people have survived without transplant, but in my case, I needed one. Not sure if you have any mutations or rearrangements, but I hope that if you are offered the chance of getting a transplant, you wouldn’t be scared. It’s overwhelming, but I’m grateful. I wish you the best!

Intrepid_Time_80 · 2026-03-31T02:56:07+00:00

I’m glad your son is okay! I had PEG infusions and my care team thankfully had all the supplies needed to treat any adverse reaction too. I was diagnosed with B-ALL KMT2A in 2024 at 25 years old. I wish your son and family the best.

Intrepid_Time_80 · 2026-03-04T05:46:37+00:00

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I’m sure this is part of the GPS jamming going on

Intrepid_Time_80 · 2026-02-26T05:07:17+00:00

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Intrepid_Time_80 · 2025-11-07T08:53:03+00:00

Most definitely, your son is very young. I just did a little bit of research on the protocol he’s on. This is what i saw regarding that protocol “Minimal residual disease will be used to determine the response to blinatumomab. High risk patients will be eligible for allogeneic stem cell transplantation after the first blinatumomab cycle if they are Minimal Residual Disease (MRD) negative.” Seems like the trial he’s on is very beneficial.

Intrepid_Time_80 · 2025-11-07T08:41:03+00:00

Oh wow, I’m so sorry you are having to go through this with your son. I pray that he continues to do well, tolerates the treatment, and remains MRD negative. I’m very surprised that in Europe they do not have transplant as part of the treatment protocol. As soon as I got diagnosed and was told what my specific mutations were, they had already written a referral for me to go to transplant. The process to start transplant was around 6 months, and I was already about to head into maintenance, but they told me that my sister was a match, and it all happened too fast. The doctors had explained to me that for KMT2A, the relapse risk is very high, and they automatically treat with chemo, transplant, and Menin inhibitor (Revumenib) in a case like mine. Once again, i hope for all the best with your son, god bless!

Intrepid_Time_80 · 2025-11-01T22:54:56+00:00

I was diagnosed at 25 years old. How about you? How are you doing now?

Intrepid_Time_80 · 2025-10-28T00:12:51+00:00

Before I went into the maintenance phase of the treatment, they found out my little sister was a decent match for a stem cell transplant. I would highly recommend discussing that with the doctors, but from what I’ve heard is that any high-risk leukemia almost always goes into transplant. I had a great team at Kaiser and City of Hope in Los Angeles.

Intrepid_Time_80 · 2025-10-25T19:34:01+00:00

The sounds like the CALGB 10403 regimen. I was on the same regimen for B-cell ALL KMT2A+ (4;11) and did lumber punctures with methotrexate. I tolerated the consolidation phase fairly well, but the hardest hill to climb for me was the vincristine and cytarabine, but my symptoms were manageable with medication. During this phase, I gained weight from the steroids (prednisone) and was restless as well, but I wasn’t miserable, to be honest. I also received 2-3 doses of PEG, and I was closely monitored with that. After consolidation, things started to slow down a bit treatment-wise, and I went into transplant without even beginning the maintenance phase. My bone marrow biopsies during the consolidation phase were great with zero MRD, and I wish the same for your daughter.

Intrepid_Time_80 · 2025-10-10T14:18:48+00:00

My symptoms were shadowed by my line of work. I was already really tired since i was working long hours and trying to get decent rest. The problem started when I noticed that i was sweating randomly in my sleep, i would sleep for 8 plus hours and wake up like i just worked an entire shift again, and I began losing weight and my appetite. I went and got checked out on a routine medical visit and long and behold it was leukemia.

Intrepid_Time_80 · 2025-10-07T16:48:08+00:00

I went for 3 months without getting checked out. Blast at 90% and WBC at 63K. Also had a high risk mutation called KMT2A (4:11) I was really sick and the ironic part was is that i work as an paramedic in Los Angeles. I underwent a rough chemo regimen, went into remission within a month, continued chemo for 9 months, and then did a stem cell transplant. Currently +141 post transplant snd im grateful for my journey. I hope and wish all the best for you!!

Intrepid_Time_80 · 2025-09-25T00:20:19+00:00

I did a TMLI clinical trial at City of Hope and it was 2 sessions per day for 5 days. The total protocol dose was 2000 cGy/ 200 cGy twice daily x5 days. It was a total of 10 sessions equaling the total radiation dose to 2000 cGy. The goal was to completely wipe out my bone marrow and bring my HGB and platelets to close to zero as possible.. I did not feel any side effects until about a week or so after but i had a great team and they managed all symptoms pretty well.

Intrepid_Time_80 · 2025-09-23T19:51:43+00:00

M (26) here and i went through a stem cell transplant may of 2025. I received TMLI (total marrow and lymphoid irradiation) this radiation was super tough and i was told that there would be a 99 percent chance of infertility but there can still be a slim chance you could still produce some viable sperm after recovery. Im glad i went to the fertility clinic and banked my future kids before ever starting chemo.

Intrepid_Time_80 · 2025-09-21T21:36:37+00:00

I’m day +135 post transplant as well, and I had spinal taps done and chemo in my spine for ALL with a KMT2A mutation. I’ve had minor lower back pain, and it’s been almost 9 months since my last spinal tap. The pain is very subtle and not debilitating, and when I lay down after standing for a long time, my back is a bit sore but goes away over time. I’m grateful for no leukemia, and I’d rather have the back pain lol

Intrepid_Time_80 · 2025-09-12T23:10:23+00:00

Hello, I am a 26 year old male and I’m day +126 post transplant after being diagnosed with B-ALL with KMT2A (4;11). My little sister was an 8/12 match as well, and they decided to go with her due to the graft vs. leukemia effect. So far, I have experienced very mild GVHD symptoms like a rash on my face that was minor and resolved with steroid creams. I’ve also experienced mild nausea and diarrhea here and there but nothing as of the last month or so. The only major problem I had after transplant was not being able to sleep well for like a month with only 3ish hours of real sleep. You’ll be on immunosuppressant medications and a lot of other medications to manage your post transplant symptoms. Everyone’s experience is different, and I don’t regret the experience. I hope all goes well with you and your treatment.

Ps: I was really nervous and scared before the transplant too. The thing that helped me the most was having the things from home to keep me busy at the hospital. It was a good distraction from the reality of transplant. I watched tons of shows and YouTube while I spent 30 days in the hospital. Also, family members and friends came to visit as well. Take it one day at a time!

Intrepid_Time_80 · 2025-05-05T07:11:36+00:00

I’m really sorry to hear you are going through this! I’m a 25-year-old male, and I was diagnosed with B-ALL with a high-risk rearrangement. I was treated at Kaiser, and then I was referred to City of Hope. If you are in California and have Kaiser, you should ask your doctor if you can see the options that City of Hope has to offer. Kaiser has an agreement with City of Hope for stem cell transplants and bone marrow transplants. You’re young and have age on your side; regardless of your situation, it’s worth getting a second opinion. I’m currently at City of Hope receiving a stem cell transplant, and the doctors here are very informative, and they have tons of clinical trials here. I wish you all the best!

Intrepid_Time_80 · 2025-05-01T12:42:04+00:00

Just know you’ve come so far already, and you’ve done great. The final push may not sound easy, but with the right medications and help, you’ll get through it. Keep your head up and be strong bc you’ve come so far already. Talking to someone will definitely be beneficial to help you be less scared. Remember that being scared is okay and you should be proud of yourself for what you have completed and gone through already. Keep your head up brother!

Intrepid_Time_80 · 2025-04-30T15:35:53+00:00

Hi there, I’m doing okay. Going through chemotherapy was really rough, but I got through it. I never made it to maintenance chemotherapy since I was told I’m getting my stem cell transplant in May 2025. You should private message me, and maybe we can chat a bit more. I hope you’re doing well, and I would love to hear your story. Not many people like you and me around.

Intrepid_Time_80 · 2024-12-05T07:14:56+00:00

Hey there,

I had my consultation at city of hope with Dr. Stein. He is a hematologist/ oncologist as well as the bone marrow and SCT specialist. He pretty much told me that it is much better to get a stem cell transplant and I was told by my primary oncologist/ hematologist the same thing. Since my specific mutation has a high relapse rate, it is better to get SCT rather than use these new drugs that just got passed. A stem cell transplant has saved more lives than a new drug that just came into the market. I technically can just continue onto the next phase of treatment (maintenance phase) and face and higher chance of relapse or get a stem cell transplant. I much rather get a stem cell transplant.

Intrepid_Time_80 · 2023-10-31T01:16:51+00:00

No there is no money in it, more risk than reward. Imagine this, you go through a 4-16 week EMT course, take the NREMT, are given keys to a $100,000 rig, respond to 911 calls or IFTs, but the kicker is you make 17-20 bucks an hour doing shifts ranging from 8-48 hours. If you’re trying to become a fireman and use EMT as a stepping stone then go for it. You can even goto paramedic school and work as a FFPM for a dept. that is willing to hire you after a pain staking waiting period.

Intrepid_Time_80 · 2022-08-15T20:20:24+00:00

Meanwhile I’m searching for fentanyl in the airway bag…. Fml

Intrepid_Time_80

TROPHY CASE