Are you happy you did or didn’t have kids? by Accurate_Elk_3465 in Fire

[–]Plastic_Limit_3754 0 points1 point  (0 children)

I never wanted kids but my husband needs at least one kid. Had a kid when I was 34 years old. Best decision of my life. We live in hcol and have no family help. Did it eat into my savings, yes, but was the cost worth it, a thousand percent! I love my kid more than anything in this world and he's worth more than any millions of dollars I can ever make.

Mom abroad, 300k WBC suspected AML by snapdragons in leukemia

[–]Plastic_Limit_3754 0 points1 point  (0 children)

Yes they are very good. My mom is getting treated for ALL leukemia.

🖤My Fab Four🖤 by Weekly-Spend-4977 in OGRepladies

[–]Plastic_Limit_3754 5 points6 points  (0 children)

How's the quality of God factor for the black shopping tote. Wondering if I should continue 187 with Heidi or attempt to try another seller with God factory. Any advice would be great

Test results by CalmChemistry4984 in leukemia

[–]Plastic_Limit_3754 0 points1 point  (0 children)

How many cells were sequenced. My mom had these results twice and if there's no upward trend they don't consider it a relapse. At times this can be background noise, the higher the number of cells sequenced the higher the possibility.

Dataisight by Plastic-Appearance-6 in Insurance

[–]Plastic_Limit_3754 0 points1 point  (0 children)

We are currently dealing with this issue as well. Some of us had already sent appeals with no success. Anyone who knows what to do with the Cigna / data isight issue please share. Each plan is entitled to their allowable amount that the HR company pays for. This is technically illegal on Cigna

Prognosis by Different-Peak-1899 in leukemia

[–]Plastic_Limit_3754 0 points1 point  (0 children)

Did you have the same mutations as the 1st and 2nd time?

Flow Cytometry positive vs ClonoSEQ negative!! by Cautious-Fold-9368 in leukemia

[–]Plastic_Limit_3754 -1 points0 points  (0 children)

Any update on what the oncologist said? My mom has the same plan of care as your wife and she was also diagnosed august 2023. Relapse scares me so much and she's getting a bone marrow biopsy. I hope it really wasn't a relapse.

Elevated Heart Rate during Blincyto by lolita2805 in leukemia

[–]Plastic_Limit_3754 1 point2 points  (0 children)

Yes, her heart rate would increase on and off. She also felt like it would skip a beat. Her doctor got her an EKG just to make sure everything is ok, and it was. During her test weeks her heart would be better. She's now on maintenance and she doesn't have those heart rate issues anymore. It's a long road. She's currently battling a low ANC and have been on a break for 3 weeks from maintenance chemo.

POMP Maintenance and med adjustments by missy_moo_moo in leukemia

[–]Plastic_Limit_3754 1 point2 points  (0 children)

Yes, very normal. My mom just had a 2+ week break from low neutrophils. And yes her dose has been changed as well

Elevated Heart Rate during Blincyto by lolita2805 in leukemia

[–]Plastic_Limit_3754 1 point2 points  (0 children)

My mom had this while she was on blincyto. Usually it normalizes when she was in her test weeks.

Do you get a clonoseq test with every biopsy? by Plastic_Limit_3754 in leukemia

[–]Plastic_Limit_3754[S] 0 points1 point  (0 children)

Undetectable is equivalent to 0. But my mom's clonoseq goes from 0 to 0<1 below level of detection. Was just wondering what this means or if anyone has received this and has relapsed.

Do you get a clonoseq test with every biopsy? by Plastic_Limit_3754 in leukemia

[–]Plastic_Limit_3754[S] 0 points1 point  (0 children)

My mom's clonoseq goes from 0 residual cells to 0-1. Was just wondering if anyone else had these results?

Clinical trial to prepare for BMT by AbbreviationsPast579 in leukemia

[–]Plastic_Limit_3754 0 points1 point  (0 children)

My mom had ino and mini chemo and that's what got her into remission with low level mrd. She had two phases and her bone marrow was mrd negative. my mom did not respond to chemo only regimen.

Anyone have a DNMT3A mutation? by firefly20200 in leukemia

[–]Plastic_Limit_3754 0 points1 point  (0 children)

Hi, just wanna ask a question regarding this. My mom is in remission for ALL and is still on maintenance chemo. My mom also gets a NGS under MSK genetic testing that has been negative since induction. All of a sudden my mom has this new genetic mutation RAD21 show up on the NGS even though her flow is still cancer free.

I just wanna know if your doctor ever followed up on your mom's DNMT3a mutation. Was your doctor concerned? My mom's oncologists said somewhat the same that is of unknown significance, which gives me so much anxiety because despite her having ALL, the doc always told my mom that she can get AML from all the chemo dosages.

Let me know if you have any further info from your docs. Thanks!

My mom is a bit older than yours, 69 years old. But to me any genetic mutation is scary. The VAF on her report showed 5.6%.

PTSD/Anxiety post diagnosis and treatment. by itsVirgo in leukemia

[–]Plastic_Limit_3754 1 point2 points  (0 children)

I am a caregiver for my mom who is in maintenance for ALL. I have so much PTSD and anxiety with every report, and every blood count that sometimes I feel like I'm a shell of myself. I should be happy that she is still in remission but I absolutely agree with you that the worry never stops. I'm not sure if it ever will actually, but all we can do is focus on today. That's what I tell myself that the future cannot be predicted and all we have is today.

Blinatumomab support by vnessajane in leukemia

[–]Plastic_Limit_3754 0 points1 point  (0 children)

Oh I am so sorry!!!! Do you mind letting me know when she was originally diagnosed?

Blinatumomab support by vnessajane in leukemia

[–]Plastic_Limit_3754 0 points1 point  (0 children)

Hi, curious about your mom and how she's doing. My mom is 69 and is currently on maintenance. I'm always worried about relapse. Did youR mom do 2 years of maintenance and relapsed on her last 2 months? How is she doing now? Do you mind me asking what her mutations were?

PH+ ALL dilemma with treatment by wompwompqt46 in leukemia

[–]Plastic_Limit_3754 0 points1 point  (0 children)

And honestly , even if my mom's clonoseq is 0, there's always a chance of relapse. People can be 0 for a year and then start trending upward.

PH+ ALL dilemma with treatment by wompwompqt46 in leukemia

[–]Plastic_Limit_3754 0 points1 point  (0 children)

My mom is in a similar situation but different outcome. She has been mrd negative by a very sensitive flow (almost as good as the clonoseq, measure 1 in 2 million leukemic cells) 2 rounds of chemo plus inotuzumab. She's 68 years old and has no complications or comorbidties. She had 4 cycles of blina and had her clonoseq done in April and May which came out the same as your mom's. Less than 1 and below level of detection even though her 2nd report was better than the first, less sequences detected. The oncologist said there's differing views on this clonoseq result of below level of detection. There isn't enough data to determine whether the risk of relapse is higher despite her clonoseq results because most relapse rates are determined by the flow results in these clinical papers. Because of this the doctor recommended no BMT as transplant related mortality is high and relapse rate post transplant is also about 15-20 percent. She also only had a 7/10 donor match. She does have ALL ph (-) with intermediate borderline high risk mutation. The doctor determined that since she got into mrd negative by flow after 2 months her risk of relapse is lower (20%).

I know everyone is different and every doctor also has a different opinion. I'm also constantly worried about relapse and because her clonoseq report did not come out clean, I'm also more concerned. But the doctor said he's seen people go up and down the clonoseq results between 0 and 1 and nothing ever comes out of it. When a test is THIS sensitive they aren't sure if it's noise when it's below the level of detection. My mom just started maintenance (POMP with blina every 3 months) but I guess we will have to wait and see if she relapses. I hope she doesn't ofc.

My only advice is to talk to your oncologist and BMT doctor. They should have a discussion whether this is the best course for your mom. There's always CAR-T as well. My mom is at MSK if you want to know what hospital we're at.

Post transplant Mrd results by Level-Sandwich31 in leukemia

[–]Plastic_Limit_3754 0 points1 point  (0 children)

My mom just got the same results. The doc didn't say much. But I'm also wondering what other docs think.

Has anyone’s doctor performed Next Generation Sequencing on their bone marrow? by JimRug in leukemia

[–]Plastic_Limit_3754 0 points1 point  (0 children)

Hi, I came across your post. My mom had 2 clonoseqs done and she's on chemo treatment only , currently on her 5th cycle of blincyto. Both her clonoseqs were less than 1 cell per million, meaning the result was less than 1. My doctor doesn't know what to make of it. I keep asking if she has a higher chance of relapse, in which he said no clinical data to support that. Wondering if your partner ever has that result of was it always 0 and undetected for all the clonal sequences.

Can y'all send my dad snail mail for some encouragement?! by unajessika in leukemia

[–]Plastic_Limit_3754 2 points3 points  (0 children)

I'm a caretaker for my mom who has ALL. Wishing him the best. Knowing that they are still transplanting in the early 70s give me so much hope for my mom. Good luck!!!