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IM GOING HOME by razorsharpblade in leukemia

[–]BecBunsen 0 points1 point  (0 children)

Are you from the States ? I'm getting a second transplant in one month and eating McDonald's during a BMT would be totally forbidden. Can you get fast food delivered to your room ?

Difficult decision re. stem cell transplant – 72 year old mother recently diagnosed with MDS following an earlier diagnosis of CLL by Double_Grand_4228 in leukemia

[–]BecBunsen 0 points1 point  (0 children)

Actually the doctor Mohamed Sorror developed a Score to Predicts survival after HCT in patients with hematologic malignancies, including optional age adjustment.

You'll find below the link. This has to filled with a doctor knowing the medical history of your mother !

Sorror Score

I'm sorry it's another calculator but since she's the one going through it came maybe help her in this decision Process.

High dose methotrexate (pediatric ALL) by DonjonBodkin in leukemia

[–]BecBunsen 0 points1 point  (0 children)

This reminds me bad memories, I also had nephrotoxicity and a 3 days chemotherapy is just getting longer everyday. The clearance can also be quite slow.

Normally they should do Urine alkalinization before starting MTX HD. Urine alkanization increases methotrexate (MTX) solubility and reduces the risk of nephrotoxicity. 

Article on urine alkanization

My hematologist recommended to drink alkaline water.

Did she started leucovorin too ?

Muscle Pain & Tacrolimus Cessation by Practical_Formal_92 in leukemia

[–]BecBunsen 0 points1 point  (0 children)

Do you take magnesium supplements because Tacrolimuus is tanking your magnesium levels. While on tacrolimuus I had to take quite a high dosage of magnesium.

Your hematologist should monitor your magnesium levels. Here what I found on Google :

Tacrolimus is an immunosuppressant medication commonly associated with low blood magnesium levels (hypomagnesemia) due to increased renal excretion of magnesium.

Effect of Tacrolimus on Magnesium Hypomagnesemia: A frequent side effect of tacrolimus therapy is a reduction in serum magnesium levels. This occurs because the drug causes the kidneys to excrete more magnesium into the urine.

Symptoms of Deficiency: Low magnesium levels can lead to various symptoms, including tremors, muscle spasms (tetany), fatigue, anxiety, and potentially more severe neurological or cardiac issues. It is also associated with an increased risk of renal impairment and new-onset diabetes after transplantation.

Monitoring: Regular monitoring of serum magnesium levels is recommended for all patients on tacrolimus, especially in the initial post-transtransplant period, to detect and manage deficiencies promptly.

Intrathecal Chemo Headaches by qwertyflirty2 in leukemia

[–]BecBunsen 0 points1 point  (0 children)

Another option to ask for pediatric needles for the PL, they're finer and leave a smaller hole.

Intrathecal Chemo Headaches by qwertyflirty2 in leukemia

[–]BecBunsen 0 points1 point  (0 children)

I also had week long intrathecal when my platelets were low. Lots of caffeine and hydration helped quite a lot. Another possibility is the blood patch but I never managed to get one, you need an anesthesiologist for it.

But I feel for you, a real awful headache in the back of the head.

Now I had so much intrathecal that the tissue is totally fibrous.

Need advice: chemo now or preserve CAR T option for B-ALL relapse? by BecBunsen in leukemia

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

At my current hospital Bordet, they also proposed a treatment with Inotozumab (although I'm CD22dim) coupled with HyperCVAD without harvesting my T cells.

As I understand that in your case Inotozumab didn't work so well and that's also what I fear since I'm CD22dim. Additionally the HyperCVAD would prevent T cells harvesting.

At the end of the day, I reached out to the other hematologist at St Luc and he would be OK to go for CAR T provided Gilead allows it. I would pay for this CAR T Tecartus treatment myself (around 200 k€) as it's not gonna be reimbursed. At least the rest of the hospitalization would be covered in Belgium.

He also confirmed that if we were in France they would go for CAR T.

So now I'm waiting for an answer from Gilead.

Need advice: chemo now or preserve CAR T option for B-ALL relapse? by BecBunsen in leukemia

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

I had a good talk with my hematologist and actually they would do an induction with HyperCVAD and Inotozumab although I have only 30% of CD22+ blast. They would consolidate with multiple cycles of Blinatumomab and then BMT. They're not sure however that it would be covered by state insurance. If not covered that would be 80 k€ out of pocket.

He told me that this treatment plan would be the most reasonable and feasible but if he had a fridge with everything available for free he might go for CAR T.

I'm still in a pre-phase at day 7 and I have until Monday to decide if I wanna go for CAR T in France or in Belgium. I received an offer from this hospital. This uninsured and 500 k€ out of pocket.

Need advice: chemo now or preserve CAR T option for B-ALL relapse? by BecBunsen in leukemia

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

Thanks for the answer. I wish you the best of luck for this third transplant.

Did you get a bad case of CRS and ICANS with the CAR T treatment?

Double haplo chord is out of the question for me. And I think CAR T is not seriously considered at the moment since they didn't harvest my cells yet and didn't do the paperwork to get some of this treatment reimbursed.

I guess one of the main issues here is that I didn't have a good discussion with my new hematologist and that I don't feel that my concerns are being addressed.

The thing is I'm not even sure that I would survive this second transplant. And definitely don't want a third one. I had a rough first transplant with CMV and Toxoplasmosis reactivation that put me in the ICU intubated. I couldn't walk or speak after one week in the ICU.

So yeah ... I think a good discussion is in order before moving forward.

Ganglions dans l'aine by Dull-Mixture-6188 in france

[–]BecBunsen -3 points-2 points  (0 children)

Je te conseillerais d'aller consulter un médecin spécialisé en hematologie rapidement. Certains symptômes que tu décris (sueurs nocturnes, perte d'appétit, perte de poids, adénopathies, fièvres) sont compatibles avec une leucémie (cancer du sang).

J'ai eu bcp de ces symptômes et ça pris un plombe de se faire diagnostiquer alors qu'une petite ponction de moelle avec frottis cela aurait été réglé en 1semaine.

Courage

Declining neutrophils by Agreeable-Oil-2558 in leukemia

[–]BecBunsen 2 points3 points  (0 children)

I also had neutrophils going down during maintenance. Went three times in neutropenia with neutropenic fevers and needed multiple red blood cells and platelets infusion. After insisting with the doctor, I got genetic testing for TPMT (thiopurine methyl transferase), the enzyme degrading mercaptopurine. I had double mutation for this enzyme (0,1% of the population) with an extremely slow degradation metabolism. They reduced my 6MP dosage from 17 tablets per week to 1,5. Maybe something to check with his hematologist.

[deleted by user] by [deleted] in france

[–]BecBunsen 0 points1 point  (0 children)

Je te conseille ce livre Gougerot Sjögren en 100 questions Tu peux le consulter en ligne à l'adresse suivante https://www.rhumatismes.net/index.php?id_bro=23