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Kamil on 7 December 2022

Category: Uncategorised

Replies: 2

Last updated: 7 December 2022

High vitamin D
by scuba (Dec 7)

Sandy's video link above is an excellent summary.
Adding to it, taking higher levels of vitamin D3 (~10,000 IU's per day) will take weeks to months to raise vitamin D levels substantially

by sandy craine (Dec 7)

Hi, See the following link to Grassroots Health article about higher levels of Vit D - Can You Benefit from Having Vitamin D Levels Over 60 ng/ml? 100 ng/ml?
Sandy

by Kamil (Dec 7)

Hi all,
I hope everyone is doing well.
I am pretty sure that there’s nothing to worry about, but my partners vitamin D levels are pretty high 185 nmo/l. The blood were actually drawn
Category: Uncategorised

Replies: 2

Last updated: 7 December 2022
srent on 3 December 2022

Category: Treating CML

Replies: 7

Last updated: 6 December 2022

Sprycel and Pleural Effusion
by kat73 (Dec 6)

Totally agree with Denise. The key is that you have time and options. You can TRY 20 mg of dasatinib and see if it keeps your PCR down and your pleural effusion gone. You can try

by srent (Dec 3)

Thanks Denise. Good thoughts. Will get the second opinion and take it from there. Will report back.

by Felix (Dec 3)

Hi, you will feel fine on Dasatinib,if you reduce to 20 mg ,100 mg is too toxic .Dont let your doctor bully you to change to Imatinib the side effects are so much worse on that ,I found anyway .Its

by srent (Dec 3)

Thanks Buzz - very helpful.
The pulmonologist drained my right lung - 1.3 liters. We are going to wait until after the holidays to restart the treatment.
Sounds like I should get a 2nd opinion and
Category: Treating CML

Replies: 7

Last updated: 6 December 2022
Fernando Burbano on 3 December 2022

Category: Food & fitness

Replies: 2

Last updated: 5 December 2022

Cómo tomar imatinib
by Fernando Burbano (Dec 5)

Hola Martín.

Muchas gracias por tu información. Voy a volver a tomarlo después de mi desayuno. El medicamento que yo tomo es genérico, el que me da el gobierno de mi país Ecuador. Y me das una

by MartinZA (Dec 5)

Hola Fernando
Hace 4 años que estado tomando imatinib de 400mg, y yo lo tomo todas las tardes después de cenar. Entonces, nunca con el estómago vacío. Tomo tambien mucho café sin

by Fernando Burbano (Dec 3)

Hola amigos.

Disculpen la pregunta,

Estuve tomando imatinib de 400mg en la mañana con mi desayuno, y me sentía bien. Consulte otro Dr y me dijo que debo tomarlo con el estómago vacío con
Category: Food & fitness

Replies: 2

Last updated: 5 December 2022
MartinZA on 8 November 2022

Category: Treating CML

Replies: 15

Last updated: 5 December 2022

Update on my involuntary TFR attempt due to low blood counts
by MartinZA (Dec 5)

Hi Buzz
Thank you once again for the really helpful info. I agree wholeheartedly with your advice and also believe I should have been on a much lower dose... I've just been for the test,

by Buzzm1 (Nov 29)

Martin, if I read your CML history summary correctly you experienced a swollen lymph node issue after three years on Dasatinib 100mg and were switched to Imatinib 400mg for the last four years

by MartinZA (Nov 29)

Hi everyone
Sorry for the late response to all the incredibly helpful messages - it's our academic year-end and I've been really busy marking my students' exams, so haven't checked

by Buzzm1 (Nov 18)

Martin, as a measure of your response to stopping your TKI three months ago, during the STOP Trials, at three months TFR, most of those who were going to relapse (exceed 0.1), had already done so.
Category: Treating CML

Replies: 15

Last updated: 5 December 2022
DawnD on 7 September 2018

Category: Uncategorised

Replies: 25

Last updated: 2 December 2022

Low hemoglobin
by scuba (Dec 2)

My doctor avoided giving me Neupogen when my neutrophils fell to 0.1 - He said it can stimulate the cancer as well as normal cells. He said it was best to let my neutrophils recover naturally while

by Rayyana123 (Dec 2)

Yes bcr-abl. Mine is at at 10.0585 from 61.8855 . My doctor is trying to give me Neupogen beause my WBC is around 3.2 and my Neutrophils are around 1.5. I am on Sprycel currently! I have been off my

by scuba (Dec 1)

BCR?
Do you mean bcr-abl? or PCR?

by Rayyana123 (Dec 1)

Scuba, what was you BCR when you stop taking medicine. Mine is around 10.6 , I have been on Sprycel about 7 months.
Category: Uncategorised

Replies: 25

Last updated: 2 December 2022
jmonzione on 1 December 2022

Category: Food & fitness

Replies: 1

Last updated: 1 December 2022

Is it okay to drink my greens?
by StayStrong3916 (Dec 1)

I cannot answer the question about asciminib absorption.
However, I believe juicing can break up the fiber in the vegetables and fruit. The fiber is very important for a strong microbiome.
And some

by jmonzione (Dec 1)

Quick question for the group - do we see any issue with consuming blended spinach and romaine and celery with a small amount of fruit? Fruit is usually apple or banana and a splash of lemon juice. I
Category: Food & fitness

Replies: 1

Last updated: 1 December 2022
Rayyana123 on 8 November 2022

Category: Blood tests

Replies: 4

Last updated: 1 December 2022

Taken Off Of SPRYCEL for two weeks Low white blood Counts
by Rayyana123 (Dec 1)

Thank you for responding! I have been on Sprycel for about six months. Its weird to me that it drop so low from the 75,000 . Now it is 3.26 and my doctor is giving me Neupogen innjections next week

by Rayyana123 (Dec 1)

Thank you for responding! My WBC is continuing to lower it is around 3.26 since I have been off medicine for a month. Now my doctor wants to put me on Neupogen to build my WBC back up. I am

by MartinZA (Nov 14)

Hi Rayyana123
I've been taken off my TKI (imatinib) for almost three months now because it was lowering all my blood counts (white, red and platelets). My situation is unusual because this

by ipmaki (Nov 9)

Hi Rayyana123. I've experienced WBC's on the order of 3 K/uL in the past on 100mg of Sprycel. The medication has always suppressed my WBC's and it tends to fluctuate somewhere
Category: Blood tests

Replies: 4

Last updated: 1 December 2022
StayStrong3916 on 1 December 2022

Category: Uncategorised

Replies: 3

Last updated: 1 December 2022

100mg Sprycel Too Aggressive?
by jmonzione (Dec 1)

I did great on sprycel but never made it to undetectable. I made it to MMR after one year of diagnosis (this is considered optimal therapy) and have stayed there with 2 blips. My situation is a bit

by StayStrong3916 (Dec 1)

Thank you for the response.
Did your numbers improve while on sprycel 100mg?
Are you still on it or did you eventually have to change TKI?

by jmonzione (Dec 1)

Don’t be scared but also ask questions! I took sprycel at 100mg for several years without issue. Some people are hyper sensitive to sprycel but many are not. I actually had more problems with

by StayStrong3916 (Dec 1)

I came across one of @scuba posts regarding DROPPING sprycel dosage to 20mg. His reasoning is that sprycel can suppress the body's own immune system to combat cml. This made a lot of sense to me
Category: Uncategorised

Replies: 3

Last updated: 1 December 2022
StayStrong3916 on 30 November 2022

Category: Uncategorised

Replies: 0

Last updated: 30 November 2022

Sauna and CML?
by StayStrong3916 (Nov 30)

Has anyone experimented with a sauna protocol?
I've come across some excellent lectures by Rhonda Patrick PhD on youtube. I've been using the sauna for about two weeks now at a rate of 20-30
Category: Uncategorised

Replies: 0

Last updated: 30 November 2022
Buzzm1 on 30 November 2022

Category: Uncategorised

Replies: 0

Last updated: 30 November 2022

Covid vaccination/annual flu shot combined
by Buzzm1 (Nov 30)

I just received my fifth Covid vaccine injection .. the first three were Pfizer .. the last two Moderna.
I'm hoping that from here on any future Covid injection will be combined with the annual
Category: Uncategorised

Replies: 0

Last updated: 30 November 2022
Rosiem on 25 November 2022

Category: Treating CML

Replies: 2

Last updated: 28 November 2022

Moving to Ponatinib, any advice?
by Rosiem (Nov 28)

This has been a long journey on Dasatinib trying to find a dose that will be efffective without overly depressing the other blood counts. Up until now I thought I only had the Philadelphia

by ColoradoGuy (Nov 28)

Have your counts always been low and required neupogen and revolade? Also you mentioned additional mutation. Is that because you were already dealing with one, or in addition to the CML

by Rosiem (Nov 25)

My monthly blood test (22 Nov '22) unexpectedly showed elevated blood counts after months of counts approximately around the same levels.
The results were so unusual for me that the assumption
Category: Treating CML

Replies: 2

Last updated: 28 November 2022
Fernando Burbano on 23 November 2022

Category: About CML

Replies: 9

Last updated: 27 November 2022

Imatinib Genérico
by Fernando Burbano (Nov 27)

Hola Israel.

Muchas gracias por tu información. Al momento tengo 2 cajas de gliveec original que me regalaron , yo tomo 400mg , pero después ya empiezo con imatinib de fabricación nacional, es

by israel (Nov 27)

Hi Fernando,
I’m from Brazil. Our government provides Imatinib (generic Gleevec) , which I have been taking since 2014. In my case, the generic version worked fine, and I think in most

by AlastairC (Nov 24)

Fernando, de nada

by Fernando Burbano (Nov 24)

Muchas gracias Alastair , eres muy amable.
Category: About CML

Replies: 9

Last updated: 27 November 2022
Kathyp on 11 October 2022

Category: Uncategorised

Replies: 6

Last updated: 23 November 2022

19 years since diagnosis 😊
by Fernando Burbano (Nov 23)

Gracias por compartir tu experiencia. Dios la bendiga.

Saludos

by Patch (Nov 9)

Fantastic Thank you for sharing your story as it is encouraging

by Kathyp (Nov 1)

Thanks Alex x

by alexmcpee (Oct 31)

Absolutely amazing thank you for dropping in to share your story. When people drop off here I can worry - it just means they’ve moved on and over cml!
congrags!
Category: Uncategorised

Replies: 6

Last updated: 23 November 2022
alexmcpee on 23 January 2020

Category: Uncategorised

Replies: 10

Last updated: 23 November 2022

Back to the gym and effect on CML?
by Fernando Burbano (Nov 23)

Hola amigos .

Yo también quiero regresar al gimnasio , fui diagnósticado hace un mes, tal vez alguien sabe si se puede tomar proteína en polvo ? .Yo tomo imatinib de 400 mg

Saludos y

by alexmcpee (Oct 31)

Thanks man this was an old post back in 2020 when I had a blip up and thought my gym sessions caused it. I no longer worry about those mind games haha. Thanks buddy hope ur well!

by ColoradoGuy (Oct 20)

Hello Alex. I don't think it does stimulate anything. I worked out almost every other day last year and was running 6 or 7 Kilometers as well. I had my best results (donward

by eunateyour (Oct 19)

First of all, congratulations on getting back into the gym and making healthy changes to your diet! It sounds like you are doing everything right to ensure you are physically healthy, which is great
Category: Uncategorised

Replies: 10

Last updated: 23 November 2022
mamodei on 20 November 2022

Category: Side effects

Replies: 3

Last updated: 22 November 2022

Sprycel and depression
by Buzzm1 (Nov 22)

I read where it is also prescribed as 80mg once a day. This would make it somewhat easier.
Of course at the rate you are responding you may be able to reduce your dosage in the not too distant

by mamodei (Nov 22)

40 mg twice a day. Yes, there is a fasting window, 2 hours before, 1 hour after.

by RC Kirk (Nov 21)

Maria, this is excellent news! Thanks for the report.
Just curious, what is your current dosage? Do you have a fasting window around the time you take it?

Kirk

by mamodei (Nov 20)

I've recently switched to Scemblix after three years of Sprycel. I've not been very tolerant of the meds. I started with Tasigna. For two months I was very weak, tired,
Category: Side effects

Replies: 3

Last updated: 22 November 2022
CdnCML on 16 February 2021

Category: Side effects

Replies: 18

Last updated: 20 November 2022

embarrassing q for the lads
by whitebloodcell_Toronto (Nov 20)

Thanks so much for that info … good thing I found this forum …
As for my response (Dasatinib 100mg)…
After the first 3 months … I was told my target log reduction

by RC Kirk (Nov 14)

Some doctors believe 50mg/day of dasatinib is a better starting dose than 100mg/day because most patients still have a good reduction of Bcr/Abl1 /the lower dose with fewer or less severe side

by whitebloodcell_Toronto (Nov 14)

Yes, I did think about it. I’m just slightly worried since I am slightly falling behind on the bcr abl log reduction at the 6 month mark already.
by pill splitter, did you mean literally mean

by RC Kirk (Nov 10)

If your doctor won't consider changing your prescription, maybe you should consider changing your doctor. Or at least getting a second opinion.
Maybe a pill splitter would solve your
Category: Side effects

Replies: 18

Last updated: 20 November 2022
alison on 6 August 2018

Category: Treating CML

Replies: 18

Last updated: 19 November 2022

May switch to Bosulif -- Advice please
by Myriam1206 (Nov 19)

Hello!
Where can I find this bosutinib diet please?
thank you.

by alison (Apr 2)

@Steff, thanks so much for all that info. Good to hear you are doing well on 300. It seems that most of the really bad side effects are at 400 or 500 dosages.

by alison (Apr 2)

@chigi, how about any side effects? and are you still on 300 mg? thanks.

by chigi (Feb 23)

Hi Alison - sorry for delayed response. I started with 100mg, then 200mg after 3 days, then 300 mg after 3 days.
i take it at night after dinner. Hope this helps
Category: Treating CML

Replies: 18

Last updated: 19 November 2022
FirefighterCML on 18 November 2022

Category: Side effects

Replies: 0

Last updated: 18 November 2022

Stomach/esophageal pain
by FirefighterCML (Nov 18)

I am on 50mg Sprycel for almost 2 years without much incident and am MMR 4. Recently I have started to have significant side effects. Particularly stomach pain and esophageal spasms. Can
Category: Side effects

Replies: 0

Last updated: 18 November 2022
Rocky Mountain Gal on 4 November 2022

Category: Uncategorised

Replies: 4

Last updated: 18 November 2022

Switching Doctors
by vlacer (Nov 18)

It is great news that you were able to switch your Doctor.

by Rocky Mountain Gal (Nov 18)

Switch complete! Met with member of my new team today and I must say I am impressed! Nurse Practitioner who was not afraid to shake my hand when we met. Also, first provider to

by No_Fun_2022 (Nov 7)

Hello Mtn Gal,
Considering everything that has been going on with your Dr's I'm so glad your switching.
You have the right as a patient to seek out care from whomever you want. You don't

by whitebloodcell_Toronto (Nov 5)

I’m not sure about the process of switching doctors in the states . But here in Canada, it’s not that straight forward either. If I have to change my hematologist/oncologist, I would
Category: Uncategorised

Replies: 4

Last updated: 18 November 2022
alexmcpee on 1 November 2022

Category: Children & young people

Replies: 19

Last updated: 18 November 2022

Latest results
by kat73 (Nov 18)

Go Turtles! I remembered when you were a newbie. A writer was born!

by An (Nov 13)

Great news Alex,onwards and downwards

by Sunny (Nov 5)

Thank you Alex, I am fine. Regarding TFR, it seems to be like the holy grail we all aspire to. Great if you can achieve it and stay there. Now I have a confession to make: my consultant suggested

by alexmcpee (Nov 4)

Thanks Dawn. I am very grateful ☺️
Category: Children & young people

Replies: 19

Last updated: 18 November 2022