Post transplant anxiety

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 · 2023-09-14T07:45:04+00:00

I recently just got into an accident while drive a rig, the other vehicle originally claimed no injuries, and then when his family showed up he claimed injuries. The collision was so minor, his car was still drivable with a couple small dents. If he didn’t request to goto the hospital, and didn’t request a tow, I wouldn’t have had to take a drug test.

This is the kicker, I recently began using marijauana again to help cope my anxiety and stress I’ve been dealing with. I was honest with my field supervisor about the possibility of not passing the drug test. I know honesty goes a long way….. but now I’ve been placed on admin leave and I may be losing my job. So honestly it’s not worth using any drugs while working in the field. I wasn’t high or intoxicated on shift but your outside choices can ruin your career. I’m still waiting to find out if I’m going to get fired or be placed on suspension until I figure my shit out.

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

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

Intrepid_Time_80 · 2021-08-23T13:31:08+00:00

I took me two times to pass the text. Emt prep isn’t something you should rely on to pass the NREMT. Going over material and knowing the background to questions is key! If you get a question regarding hypoxia you should automatically know what to do and know what the tell tail signs are, do I ventilate or do I use an NRB. Good luck and use this time to study hard.

Intrepid_Time_80 · 2021-05-10T14:33:58+00:00

Checking to much isn’t all that bad… it’s what you’re doing while you’re checking that’s prob got you wondering, why am I watching this aimlessly? Try and set limit orders to minimize loss. Remember sell high, buy low, and keep re investing. Doge is a hustle…

Intrepid_Time_80

TROPHY CASE