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MMR update

Hi,

I just want to share with you with my wife's PCR results.

2018 Nov - FISH 91% / PCR 115.029% @ dx 

2019 Feb - FISH 4%

2019 Mar - PCR - 0.1755% IS - p210 transcript e14-a2 (b3-a2)

2019 Jun - PCR - 0.033% IS

Cf - 1.61, measurement sensitivity up to MMR4.5 (EUTOS certificate)

Till now biggest issue is often diarrhea which does not happen every day but causing weakness and frustration. We had some bad days and good days but we're happy now that we're on the track with achieving MMR. Hopefully we could see MMR4.5/CMR, but we're aware that this is just beginning of our journey. Hopefully at some day my wife will be part TFR or even at some point we will hear about the tested, working cure (which is what I wish to all of us).

I also want once again to give big thanks to all of you here. We're checking forum every day. This is really helpful and supportive. Thank you very much.

Best regards / Chris

 

Hi Chris,

That's great - a fast response. MMR is an important milestone, and hopefully she will get into the MR4 territory soon enough. 

What TKI is she taking (and if imatinib, is it a generic)? A couple of people here have had GI issues with specific generics - so not the imatinib drug itself, but some of the pill "fillers". Diarrhea is often seen with bosutinib, but that's not routinely used as a first line therapy. 

David.

Hi David,

She's taking 400mg generic imatinib Meaxin KRKA. It's not that it grade 3 or 4 issue. It also does not happen every day. But this is somehow connected, because it happens soon after taking a pill. She try to avoid unhealthy food (deep fry etc) and eat too much at once. Sometimes it helps sometimes not. Last week we took some holidays with kids and there was not a single incident. 

She take 2x5g of Ornithini aspartas (prescribed) to support her liver and it is doing the job because last results are ALAT 44 U/L, but she had even 65 (norm up to 45), AspAT 36 U/L (norm up to 35). 

 

I haven't got a word of Romanian, but the PDF linked below appears to suggest Meaxin imatinib contains macrogol. I know someone else here (Nimbus2 I think?) found they had GI issues with this particular filler ingredient in their medication. Is there any way she could be prescribed a different generic imatinib to see if that is the cause?

https://www.anm.ro/_/_PRO/pro_5538_29.04.13.pdf

Through Google Translate:

Each film-coated tablet contains 400 mg imatinib (as imatinib mesylate).
- The other ingredients are: lactose monohydrate, corn starch, hydroxypropyl cellulose,
microcrystalline cellulose, crospovidone (type A), anhydrous colloidal silicon dioxide and
magnesium in the core of the tablet and polyvinyl alcohol, titanium dioxide, macrogol 3000, talc,
red iron oxide (E172) and yellow iron oxide (E172) in the film.

David, thank you. That is interesting.

Here in Poland where we live, hospitals are issuing once in a while public tenders for imatinib. They can change drug if there are side effects etc. But I know that for imatinib there is Meaxin and Nibix which as I checked do not include macrogol. 

https://www.medicines.org.uk/emc/product/2371/smpc

We will talk with our onc. Thank you.

Hi Chris

I`m so glad your wife get better result, and I hope she will be better soon .For the weekness and diarrhea I make Carrot and beet juice every day .

Good luck

Sue

I got the impression initially from some consultant haematologists that they considered the side effects suffered from different generics to be "in the minds" of their patients. I was sceptical myself until I suffered diarrhoea with the use of the Accord version of imatinib.

For my own use, I have compiled a table of comparative excipients used in the various generics. I have also added dasatinib to the list.

Cipla has fewer excipients than generics and no Macrogol (polythene glycol) which appears to be a substance used to overcome constipation. Cipla works well for me, but on the other hand so did Sandoz which contains Macrogol.

Macrogol may well be the culprit but I would love to discuss this with an informed pharmacist.

I am unsure why imatinib (and dasatinib) contain Macrogol. Presumably, the manufacturers have not added it to have a laugh.

Anyway, I have written out a hundred lines: "Never be judgmental about fellow CMLers who claim serious side effects from different generics".  

 

 

Thank you for your input. After we will discuss with my wife's hematologist I will all let you know about the outcomes. I wonder why sometimes it happen and other day not. 

Best regards / Chris