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Justina on 16 December 2018

Category: Getting help

Replies: 22

Last updated: 25 September 2020

Diet for CML patient
by David Fitz (Sep 25)

What did your CML doctor say?

by Maddie (Sep 25)

They want me to take omeprazole for my esophagus issues. Can I take this in between 12 hours apart. I am on 50 mg sprycel
Your thoughts

by Maddie (Sep 25)

They want me to take omeprazole for my esophagus issues. Can I take this in between 12 hours apart. I am on 50 mg sprycel
Your thoughts

by mozart8 (Apr 1)

Thank you so much for your response!
Category: Getting help

Replies: 22

Last updated: 25 September 2020
Vijay Kumar Verma on 24 September 2020

Category: Uncategorised

Replies: 5

Last updated: 25 September 2020

Pcr@37 months
by alexmcpee (Sep 25)

Yes those starting from a higher place it would make sense it would take longer. Like you I am “young” and wbc 330 and massive spleen at diagnosis. Am sure one day we will get there.

by Vijay Kumar Verma (Sep 25)

It may be related with the young age & high WBC. At diagnosis my WBC was 492( normal 4-10) & bigger spleen. Still my RDW is higher than the normal.

by alexmcpee (Sep 24)

Yes like you it can be discouraging and worrying to see higher BCR after several years than most on this forum. Seems we are a select few. It can take many years to get MMR but rest easy knowing

by Vijay Kumar Verma (Sep 24)

Yes sir, earlier I used to get worried about my Pcr reports .fellow Cmlers at Cml SUPPORT UK made me cool,no worry as long as Pcr is going down. Due to covid I stockpile Imatinib till Dec 2020,after
Category: Uncategorised

Replies: 5

Last updated: 25 September 2020
alexmcpee on 22 September 2020

Category: Uncategorised

Replies: 9

Last updated: 24 September 2020

Potential new CML treatment?
by argearge (Sep 24)

Oooh I see, I understand your comment.
Indeed, I know someone who was intolerable for all TKI,s. He had a Allo-SCT, but the CML returned ...

by alexmcpee (Sep 24)

TKI works for the “vast” majority but we have to be mindful their are some in the region of 5-10% of people that they don’t work on! That’s why sometimes I feel bad harping

by argearge (Sep 24)

Do you mean we do badly on TKI ?

by alexmcpee (Sep 24)

Well technically we need both. That way we cover those don’t respond to TKI Those that do and potentially cure us all one day. The latter bit I’d imagine is a long way off. Who knows.
Category: Uncategorised

Replies: 9

Last updated: 24 September 2020
Vijay Kumar Verma on 24 September 2020

Category: Uncategorised

Replies: 0

Last updated: 24 September 2020

Pcr@37 months
by Vijay Kumar Verma (Sep 24)

Pcr 0.126%(IS) @ 37 months.
Category: Uncategorised

Replies: 0

Last updated: 24 September 2020
Justine on 22 June 2020

Category: About CML

Replies: 1

Last updated: 22 September 2020

Unusual fatigue and discomfort
by AliceN (Sep 22)

Hi Justine,
Im similar to you and just over 3 years in from diagnosis. I’ve had fluctuations in fatigue and think this may be getting worse as I’m getting older, I’m almost 55 and

by Justine (Jun 22)

Hi, cheers, hope everyone is doing well. I'm a little over three years since diagnosis, have been doing fine on Imatinib 400 mg until the last month when I've had terrible fatigue and
Category: About CML

Replies: 1

Last updated: 22 September 2020
chris23 on 20 September 2020

Category: Getting help

Replies: 2

Last updated: 20 September 2020

Arthritis-like symptoms
by chris23 (Sep 20)

Thanks for your reply. I'm not certain it is TKI-related in my case because I had the issue before treatment, indeed I had it for about a year before diagnosis. At times, my knees are so

by alexmcpee (Sep 20)

Yeah this is on the top of the Symptoms for TKI not CML list I am afraid, joint, muscle and bone pain are very very common along with fatigue being another big one.
I get very achy joints at times

by chris23 (Sep 20)

Hey,
Does anyone else suffer from arthritis-like symptoms? I'm relatively fit and young, so I'm concerned I could be showing early signs of arthritis.
Assuming it's related to my CML, it
Category: Getting help

Replies: 2

Last updated: 20 September 2020
Sally-bear on 16 September 2020

Category: Side effects

Replies: 2

Last updated: 20 September 2020

Imatinib side-effect?
by Sally-bear (Sep 20)

Hi Philip...I'm glad to hear Omeprazole has helped your cough. It helped me a bit, but after 2 weeks taking 40mg per day,
GP says it should have helped to ease my chest by now.

by PhilipDavid (Sep 17)

Hi. I was diagnosed in February 2015 - started 400 mg imatinib in April 2015. I developed a horrible chronic cough - tried everything - now on Omeprazole which seem to have helped cough

by Sally-bear (Sep 16)

Hi everyone
I have been on Imatinib for 19 years now....am on 400mg per day. I have always suffered with congestion/cough
since taking it, but it has got worse and chest is painful. My GP is
Category: Side effects

Replies: 2

Last updated: 20 September 2020
Rashmi Agarwal on 18 September 2020

Category: Uncategorised

Replies: 3

Last updated: 19 September 2020

BCR levels 2yrs
by Rashmi Agarwal (Sep 19)

thanks alot for your reply, our doctor suggested to wait for 3 months and test again in 3 months .. not to panic and he had seen cases that goes up and down and then settle to a point.. so as for

by ColoradoGuy (Sep 18)

I will echo response in that it very well can be a lab error and if not then another TKI will most likely get you back to a deeper response. If a second test confirms it is not an error I

by alexmcpee (Sep 18)

Could be an error in reporting but if not at 0.1 your still very safe anything less than 1% is where you want to be. If not an error could be a domain mutation meaning that Imatinib no longer works

by Rashmi Agarwal (Sep 18)

my husband was diagnosed 2 years bk.

his bcr levels started at 47% 2 years bk

then on 1.5yrs testing it came to 0.001

but again today's report that is 2yrs is 0.1%
we are so
Category: Uncategorised

Replies: 3

Last updated: 19 September 2020
Craig747 on 15 September 2020

Category: Children & young people

Replies: 3

Last updated: 18 September 2020

Need some advice on platelets
by Craig747 (Sep 18)

I honestly have not heard of this. Can you send a link? And its ok to drink with Sprycel? Thanks

by Praveen (Sep 17)

Take papaya leafs juice twice a day. It will increase your platelets counts. You will see the difference in one week.

by snowman 35 (Sep 15)

My platelets were 140-150 then I started eating beetroots and went around 170+190...Now without eating constantly beetroots are I'm normal range(170-200)

by Craig747 (Sep 15)

Hello fellow CML warriors. I am now past month 3 and on 100mg Sprycel. At DX I was at 36% now I found out yesterday I am at 0.66. I am happy about that. My CBC looks good except my platelet is
Category: Children & young people

Replies: 3

Last updated: 18 September 2020
KingBurger on 24 July 2020

Category: Blood tests

Replies: 25

Last updated: 17 September 2020

New to CML
by Praveen (Sep 17)

Papaya leafs juice increases my platelets count from 1.13 to 1.28 in one week. It’s effective

by KingBurger (Sep 14)

Hi all,
Thanks again for all the comments. Just an update. My side effects have mostly dissipated at this point on Tasigna and I just got back my BCR/ABL for 1 month on the drug (if you recall I was

by philmc (Jul 27)

I'm on 100mg Dasatinib. I seem to be tolerating it right now, and as I say I don't know my latest BCR-ABL result yet, so I haven't fought to lower the dose or anything like that. After

by KingBurger (Jul 27)

Sounds like we are in a very similar boat. Will be curious to hear about your response to Dasatinib. What dose are you taking?
Spoke to my doc this morning and he wants to to take 3 days off of
Category: Blood tests

Replies: 25

Last updated: 17 September 2020
argearge on 17 September 2020

Category: About CML

Replies: 3

Last updated: 17 September 2020

No MMR after 24 months and in TFR
by argearge (Sep 17)

Thanks guys, maybe I just panicked.

by ColoradoGuy (Sep 17)

It took me 27 months to reach MMR and that was after switching TKI's 10 months before reaching MMR. I was concerned and then starting reading in many places that CCyR (<1.0) is a safe

by alexmcpee (Sep 17)

Each persons case is unique and not everyone will get TFR but with that being said I think it can take a very long time to be at lower levels maybe a decade or 2 and to say that it’s not

by argearge (Sep 17)

I was wondering. Literature states that there is a minimal chance on TFR when there is no MMR after 24 months. Can someone confirm this?
Category: About CML

Replies: 3

Last updated: 17 September 2020
Christine R on 13 September 2020

Category: Uncategorised

Replies: 2

Last updated: 15 September 2020

Increasing platelet count
by Christine R (Sep 15)

I have had many ECGs during chemo and i had echoes whilst have treatment for breast cancer. No problems were found.
I have had checks on my bone marrow, scans of lower abdomen, ultra sound of

by sandy craine (Sep 15)

Have you had any tests for possible cardiac issues?
Sandy

by Christine R (Sep 13)

Over the last 3 years my platelet count has steadily increased and is currently 1,000. I was diagnosed with cml 17 years ago and have been on Nilotinib for most of this. PCR has remained at .02 so
Category: Uncategorised

Replies: 2

Last updated: 15 September 2020
Damian Gabilondo on 14 September 2020

Category: Uncategorised

Replies: 2

Last updated: 15 September 2020

PCR 27 months
by Damian Gabilondo (Sep 15)

Thanks for the answer, it is what I had read, but what caught my attention is that on this occasion the test result was expressed <0.0032% RM 4.5, it gave an indicative and not an exact number as

by sandy craine (Sep 15)

Hola Damian,
Copied from page 12 of our qPCR primer:
Common factors affecting the suitability of a sample sent for q-PCR testing
• If a blood sample has been in transit for several days, or has

by Damian Gabilondo (Sep 14)

Hola compañeros como estan mi resultado de PCR IS agosto 2020% 0.0032, 27 meses nilotinib 600, pocos efectos adversos, me siguen llamando la atención los problemas de copias ya que influyen en
Category: Uncategorised

Replies: 2

Last updated: 15 September 2020
CdnCML on 15 September 2020

Category: Blood tests

Replies: 2

Last updated: 15 September 2020

Low Platelets after nearly 2 years on Dasatinib?
by snowman 35 (Sep 15)

My platelets were 140-150 then I started eating beetroots and went around 170+190...Now without eating constantly beetroots are I'm normal range(170-200)....

by CdnCML (Sep 15)

Should mention that all my other levels (wbc, rbc, etc.) are within normal range and I feel fine physically. Nothing has changed or jumped or fallen in the last few months except for platelets.

by CdnCML (Sep 15)

Hello,
Diagnosed in November of 2018, I've had a relatively smooth journey with CML. Was put on 100mg Dasatanib following diagnosis. My platelets were lowish (always hovering around 100) but the
Category: Blood tests

Replies: 2

Last updated: 15 September 2020
ipmaki on 17 August 2020

Category: Treating CML

Replies: 18

Last updated: 14 September 2020

30 month MMR Therapy Goal?
by argearge (Sep 14)

Thank you. The problem is, I do not have any side effect from the imatinib. What was the reason you changed?

by Felix (Sep 13)

Hi,I changed from400mg Imatinib when I was at 0.4% to Dasatinib.Doc wanted me to start at 100 mg but I refused so I started on 50 mg .I reached Undetectable in less than five months ,I am now

by argearge (Sep 13)

Thanks for your answer. The main questions I have is if TFR is still a real goal and can I still play soccer ? I am in a soccer team. I am afraid of the possible adverse effects, especially the

by kat73 (Sep 13)

Do it. Switch to dasatinib. 140 is too much, but it won't do any harm for a couple of months. By then, I'll lay money you will have a nice reduction in your PCR number and
Category: Treating CML

Replies: 18

Last updated: 14 September 2020
Nikita.raj on 9 September 2020

Category: Reproductive health

Replies: 5

Last updated: 14 September 2020

Temporary imatinib stop
by Sasha1917 (Sep 14)

I am on Imatinib 400. 30 days on 7 days off for 2 years, and no problems .

by Zaccar (Sep 12)

You won't drop dead if you stop for two weeks, Treatment stoppage on inhibitors is common. I stopped two days ago for one week because my white bood cells were two low.I'm far from

by Vikram (Sep 12)

Hi..nikita..
Your bcr-abl report???
MY last 8-9 year report UNDETACTABLE...
Drug off 2 week no difference.. My experience .. (I think resone UNDETACTABLE 8-9 year)
With out doctor advice... Risky

by Vikram (Sep 12)

Karthikeyan ... Right advice
Category: Reproductive health

Replies: 5

Last updated: 14 September 2020
KingBurger on 6 September 2020

Category: Side effects

Replies: 5

Last updated: 12 September 2020

Nilotinib - Dry skin and itchy patches
by KingBurger (Sep 12)

Thanks Lucky! Went to the Derm last week and have an arsenal of steroid creams. Already looks to be getting better!

by Lucky (Sep 11)

Hi,
I had the same red rash on my face when I started treatment with nilotinib. My oncologist prescribed me Diprosone 0,05 % cream betamethasone. It is a corticosteroid. He told me to use it not

by KingBurger (Sep 8)

Thanks both for the reply! Will let you know what the Derm says.

by chris23 (Sep 7)

I've had similar skin problems since starting on nilotinib in Dec-Jan. I also have a red bumpy rash covering most of my body, which seems to be slowly spreading and getting worse. I take an
Category: Side effects

Replies: 5

Last updated: 12 September 2020
bendicco on 9 September 2020

Category: Side effects

Replies: 5

Last updated: 12 September 2020

NEED ADVICE!!
by bendicco (Sep 12)

Hi thanks for your response. My numbers are not detectable and before that they were in the range of 0.004, 0.002 and downward. I have another appointment with him in a few months

by AlastairC (Sep 12)

I think your oncologist needs to think about the dose requirements for getting to MR4, and the requirements for maintaining MR4 when you get there. If you have only been at MR4 for 6 months or so it

by bendicco (Sep 10)

Thanks for your response! My oncologist refuses to agree to reducing my imatinib to 200 as he says it is not a therapeutic dose and my numbers will go up again. I have been less than 0.01 for

by AlastairC (Sep 10)

Hi Bendicco. I can't remember where your BCR-ABL is and whether/how long you are in MMR. If you are long term in MMR/MR4, it might be worth trying a reduction to 200mg of imatinib. When I did
Category: Side effects

Replies: 5

Last updated: 12 September 2020
ShawnJ on 9 September 2020

Category: Blood tests

Replies: 5

Last updated: 10 September 2020

PCR Increase
by alexmcpee (Sep 10)

Ahh that’s really good news! Yes it’s something we all have to learn I freak out as much as the next person I kind of want to save my worries for a time when/if I need to worry and as I

by ShawnJ (Sep 10)

Update
The doctor called me and explained to me that the lab was mistakenly reporting the p190 transcript and should only be reporting the p210. He had the lab re-chart my results since diagnosis

by Lucas (Sep 10)

Hey, Shawn! The same thing happened to a patient here in Brazil and it wasn't anything to worry about. He's still in remission (PCRU) and have no other problem. Just to be on the safe side,

by ShawnJ (Sep 10)

Alex,
Thank you for the reply.
I have searched the far reaches of the web to see if I could find something where the P190 jumped like that in a test result, there isn't much of anything out
Category: Blood tests

Replies: 5

Last updated: 10 September 2020
jriccoboni on 9 September 2020

Category: Uncategorised

Replies: 1

Last updated: 9 September 2020

Vitamin C
by Felix (Sep 9)

Hi, I take Nu U Nutrition.

by jriccoboni (Sep 9)

Vitamin C supplement brand suggestions anyone?
Category: Uncategorised

Replies: 1

Last updated: 9 September 2020