You are here

Forum

gautamjaiswal on 10 July 2018

Category: Treating CML

Replies: 3

Last updated: 11 July 2018

Severe bone pain and constant fever
by SusanL (Jul 11)

You might want to check your CYP3A4 status. I just read a study about the Indian population and their slow metabolism of CYP3A4. You may be a slow metabolizer and thus have quite a bit

by gautamjaiswal (Jul 11)

Thanks buddy. The fever is something that I'm unable to get over with. Even my oncologist is unsure of why the feverish tendency.

by Tbrand (Jul 10)

I had this same wbc at diagnosis and started Gleevec right away. Similar symptoms, very weak. My blanket was heavy for me to pull over, bone pain in the legs and swollen ankles. But I got through it

by gautamjaiswal (Jul 10)

Hi,
I'm a 39yr male from India. I was diagnosed of CML a month back, June'18. My WBC count was spiked at 93000 hence I was precribed Hydrea for 10 days post which the count dropped to 7600. I was
Category: Treating CML

Replies: 3

Last updated: 11 July 2018
Riggered on 9 July 2018

Category: Uncategorised

Replies: 6

Last updated: 10 July 2018

Formaldehyde
by Justine (Jul 10)

Thank you, Denise. It is probably not useful for us to try to figure out how we got it -- though I do the same! (My biggest worry is that whatever caused it in me will also affect our sons in future

by Justine (Jul 10)

I am sorry to have posted something political. I, too, want a good place for CML info and don't want to alienate anyone. Consider me admonished, and I will not post extraneous comments like that

by Tbrand (Jul 10)

I really liked this site until this political crap. It has no business here. Take your political grief elsewhere, I don’t appreciate it. I do appreciate the outstanding feedback regarding CML though

by Felix (Jul 9)

Hi Justine ,I too was wondering if ever there has been a survey or questionnaire we can contribute to because I have blamed all sorts of things for my CML. Buying a more powerful microwave,
Category: Uncategorised

Replies: 6

Last updated: 10 July 2018
scuba on 4 May 2018

Category: Uncategorised

Replies: 18

Last updated: 10 July 2018

100 mg Sprycel is not necessary for first line treatment
by RC Kirk (Jul 10)

David, thanks for this link so we can access the original article.

by David Fitz (Jul 9)

For anyone who wants to read a copy of this paper, head to http://www.sci-hub.tw and put the DOI link below into the search box.
https://doi.org/10.1002/cncr.31357

The paper should then

by kali (Jul 2)

Thanks Kirk, I will go over to read your post.

by kali (Jul 2)

Thanks for link.
I am 4 years on Sprycel with 100, then 70 and now 50 with great results.
It would be nice to go to 20 and stay there until we learn more success with discontinuing completely.
Category: Uncategorised

Replies: 18

Last updated: 10 July 2018
MJP on 10 July 2018

Category: Blood tests

Replies: 0

Last updated: 10 July 2018

Please forgive my rant - TSH and doc
by MJP (Jul 10)

I had thyroid cancer in 2000 and had my thyroid removed along with being given 150 mci of radioactive iodine. In April of this year I was diagnosed with CML.
When I first started
Category: Blood tests

Replies: 0

Last updated: 10 July 2018
SusanL on 5 July 2018

Category: Uncategorised

Replies: 4

Last updated: 10 July 2018

Do the side effects get better? Thank you for this forum and support...
by SusanL (Jul 10)

Oh my goodness....the side effects. It was a lot easier with the steroids but my stomach was a mess. I even get depression on the gleevec. I take it at night with supper and I

by SusanL (Jul 10)

Thank you so much for responding....

by AlastairC (Jul 6)

Hi Susan, 11 years down the line I still remember the night sweats and bone pain well after starting imatinib 400mg. They declined over 2-3 months to a level where they didn't impact my daily life

by David Fitz (Jul 5)

Hi Susan,
400mg ... so you’re on imatinib. How long have you been taking it?
I can talk to GERD quite well, as I have a bit of a history with that. Imatinib on an empty stomach is a recipe for
Category: Uncategorised

Replies: 4

Last updated: 10 July 2018
J. HY Wong on 1 July 2018

Category: Organising your life

Replies: 7

Last updated: 9 July 2018

New and young and worried
by J. HY Wong (Jul 9)

Thank you all for the replies, it was a bliss to read through encouraging words from the community.
I have started some slight jogging since then, while I cannot feel any improvements yet, the

by davewell (Jul 3)

Hello,
and welcome again.
As other have suggested, hang in there. The first few months are the hardest, both in terms of side effects and emotional turmoil.
I started out with Sprycel 140mg

by LouiseS (Jul 3)

Hi J.
Hang on in there . The first couple of months are def tough ( where you are right now ) but my husband felt much better when his red blood counts started to return to normal range a

by David Fitz (Jul 2)

Hi there,
I'm on Sprycel / dasatinib as well. I definitely feel more tired than I used to, but dropping my dose (to 50mg) has definitely helped a bit at least. I work a 4-day week to help
Category: Organising your life

Replies: 7

Last updated: 9 July 2018
nk_godvani on 7 July 2018

Category: Blood tests

Replies: 3

Last updated: 9 July 2018

2 years results
by Philiptibbs (Jul 9)

Thats great keep up the good work!

by nk_godvani (Jul 8)

Thank you very much for the reply...

by David Fitz (Jul 7)

They are excellent figures. An optimal result.
The evidence emerging is that if you remain in a similar position, and there’s no reason to think why you wouldn’t, that in some time in the future you

by nk_godvani (Jul 7)

Hello i am on Imatinib (400) since last two years. PCR at 15 month -0.090,

at 18 month-undetactable,

at 21 month-0.022,

at 24 month-undetactable. What about future prognosis. Pls
Category: Blood tests

Replies: 3

Last updated: 9 July 2018
LouiseS on 7 July 2018

Category: Uncategorised

Replies: 3

Last updated: 7 July 2018

Blood Results 3 months after dosage reduction
by LouiseS (Jul 7)

His Eosinophils is at 9% when the range is 0-5% but hopefully that doesn’t mean anything. Sometimes my googling isn’t a good thing :) Just antsy because he did reduce his Sprycel after only 6 months

by cmljax (Jul 7)

WBC is barely below low end of normal, probably due to low neutrophils - nothing to worry about at this time. Do not understand Eosinophils - normal absolute is .05 - .5 and normal % is .8% -

by kat73 (Jul 7)

We watch so much Brit TV that we're for England, too! Pretty much everything in the Acorn catalog for the past ten years . . . Not to mention Brit lit is pretty much all I read, too -

by LouiseS (Jul 7)

Hi everyone
We are waiting for results to see how my husband Paul is doing at 9 months after reducing his Sprycel from 100 to 50. But in the meantime, the initial blood results are back and
Category: Uncategorised

Replies: 3

Last updated: 7 July 2018
Vijay Kumar Verma on 2 July 2018

Category: Uncategorised

Replies: 10

Last updated: 6 July 2018

Pcr @12 months
by Vijay Kumar Verma (Jul 6)

Thanks sir,i'm cool now.all worries relieved.

by AlastairC (Jul 3)

In UK the likely timescale would be to have the next PCR test would be in September - 3 months after your last one. That would be long enough to see a further drop in BCR-ABL or to identify a

by Vijay Kumar Verma (Jul 3)

Thanks sir,my next due is in dec 18

by AlastairC (Jul 2)

Hi Vijay,
Most important thing here is that despite the change in medication the trend in BCR-ABL measured by PCR is still downwards. The reduction in the last three months shows that Imatinib is
Category: Uncategorised

Replies: 10

Last updated: 6 July 2018
David Fitz on 4 July 2018

Category: Clinical trials

Replies: 7

Last updated: 5 July 2018

Final results of DESTINY trial
by Romo (Jul 5)

Kat,
My interest in this study coupled with the Destiny Trial
is in the Destiny Trial dose reduction possibly attributed
to LSC becoming more active and therefore subject to TKI affect.

by cmljax (Jul 5)

Very encouraging. Hard to believe that standard dose of nilotinib is still considered 400 MG 2X/day in this study. I started nilotinib as my first line therapy 21 months ago at 300mg 2x/day

by kat73 (Jul 5)

Romo - Very interesting - thanks for posting this. I'm only sorry that their cohorts did not include patients on 20 mg Sprycel, because now there will still be controversy over that low a dose

by davewell (Jul 5)

This is very good news, that 72% for MMR4 is a crazily high number, compared to the previous results.
The part about the utility of de-escalation is also very intriguing. Seems like bit by bit we
Category: Clinical trials

Replies: 7

Last updated: 5 July 2018
SusanL on 3 July 2018

Category: Uncategorised

Replies: 2

Last updated: 5 July 2018

Feeling very warm after dosing my Gleevec/Imatinib every evening....
by SusanL (Jul 5)

Thank you! I found another group of people who take gleevec and three out of many became warm..from the inside. Their warmth actually immanated from the biopsy locales....I did tell my

by Justine (Jul 4)

That is very interesting. I haven't noticed anything like that but there does seem to be quite a range of different reactions among us. It would be worth mentioning to your doctor. I have tried

by SusanL (Jul 3)

So new and so many questions....
Does anyone become quite “warm” after taking their gleevec/imatinib dose? I take it after a good sized dinner. I also have several other symptoms...but
Category: Uncategorised

Replies: 2

Last updated: 5 July 2018
alexmcpee on 5 July 2018

Category: About CML

Replies: 3

Last updated: 5 July 2018

Travel Insurance UK to France
by Felix (Jul 5)

Hi, I got an email from Savvy Woman yesterday she’s off the BBC I think ,she has an article about trying to get travel insurance when you have cancer on there ,just Google it.She mentions a few

by alexmcpee (Jul 5)

Thank you!
Yes I did use the search but couldn’t see a comprehensive list of insurers. I did find a link that Sandie posted but the URL was offline.
I’ve just used moneysupermarket for cancer

by AlastairC (Jul 5)

Alex there has been a lot correspondence over many years on this subject. If you put travel insurance in the search box at top right of the web page you will see what I mean. This link is the most

by alexmcpee (Jul 5)

Hi all,
Looking for some urgent advice I am going to France for 2 days tomorrow.
I have travel insurance with my bank (Lloyd’s) but I don’t think they’ll now cover me due to my diagnosis in March.
Category: About CML

Replies: 3

Last updated: 5 July 2018
MJP on 3 July 2018

Category: Side effects

Replies: 1

Last updated: 3 July 2018

Berocca for fatigue?
by David Fitz (Jul 3)

A colleague of mine swears by it as a hangover cure!
It's not going to cause any problems with your TKIs - so nothing to lose, but they're not a silver bullet to tiredness by any stretch.

by MJP (Jul 3)

Trying to find some information on the use of Berocca to help combat fatigue. My stepdaughter takes it for “energy”. http://www.berocca.co.uk/what-is-it/
I’m on 100mg sprycel
Category: Side effects

Replies: 1

Last updated: 3 July 2018
SusanL on 29 June 2018

Category: Uncategorised

Replies: 2

Last updated: 3 July 2018

Magnesium citrate with gleevec ?
by SusanL (Jul 3)

Thank you....

by scuba (Jun 30)

Yes.
Better to take Magnesium Taurate, but Citrate is fine.

by SusanL (Jun 29)

Is it ok to take magnesium citrate with gleevec? Do I need to take it so many hours apart?
Many thanks,
Susan
Category: Uncategorised

Replies: 2

Last updated: 3 July 2018
Bronson_CLE on 3 May 2018

Category: Side effects

Replies: 10

Last updated: 2 July 2018

Does reducing Gleevec dose help with facial/eye edema?
by Vijay Kumar Verma (Jul 2)

Use ice pack 3 to 4 times in a day ,to exercise to sweat a lot,do sauna.share the result after three four days

by tiredblood (May 10)

If they’d just acknowledge the side effects exist and they don’t have much to offer for the side effects would go along way with me.

by Bronson_CLE (May 9)

Thank you Kat for your response. I'll wait until my next appt. in Nov. and if my numbers are still good; try pushing a bit with my onc for dose reduction.

by kat73 (May 8)

Bronson - We can all relate to that feeling of wanting to go rogue every once in awhile! When you don't feel listened to and you're miserable, and it looks like nothing but more of the same
Category: Side effects

Replies: 10

Last updated: 2 July 2018
Adeola on 27 June 2018

Category: Treating CML

Replies: 7

Last updated: 2 July 2018

My body is retaining a lot of water
by Vijay Kumar Verma (Jul 2)

Do exercise and sweat a lot,drink plenty of fluids.posdible take sauna

by Justine (Jun 30)

At last visit four days ago my oncologist prescribed hydrochlorothiazide 25mg, a diuretic, because I have also had edema. It does seem to help. My eyelids are less swollen, in particular, which is

by chevyflame (Jun 30)

I also had full body edema from Gleevec 400mg. Had to discontinue the drug after just 44 days because I had gained ten pounds in three days - all fluid. My opthamologist said even my eyeballs were

by LouiseS (Jun 28)

To follow on from Kat, my husband has had terrible eye swelling on Sprycel . Reducing his medication from 100 to 50 mg has made a huge difference , but it still hasn’t gone away. It’s worst in the
Category: Treating CML

Replies: 7

Last updated: 2 July 2018
SusanL on 24 June 2018

Category: Uncategorised

Replies: 2

Last updated: 29 June 2018

Steriods...Need Help with Dosing!
by SusanL (Jun 29)

Thank you for the response. Along with all the other testing my doctor found out that I have autoimmune antibodies to my adrenals. He wants to give steroids before it turns into adrenal

by David Fitz (Jun 27)

Hi Susan,
I’m sorry I don’t have an answer for you but the drugs.com stuf is often missing nuances that your doctor (hopefully) has considered.
It does sound like a good idea to take those as

by SusanL (Jun 24)

Hi. I am new to “ALL” this and I am having a very hard time dosing my steroid that I need to use for my Addison’s disease with my gleevec. I was on dexamethasone and switched from that
Category: Uncategorised

Replies: 2

Last updated: 29 June 2018
hannah2010 on 26 June 2018

Category: Uncategorised

Replies: 4

Last updated: 22 November 2021

Cml and pregnancy
by Fillette (Jun 29)

Dear Hannah,
I would like to wish you a good luck. I am 27 years old and I was diagnosed 3 months ago. I as well wish to have a family sometime in the future. Please keep us updated.
Best,

by Gitel (Jun 27)

Hi, When pregnant, especially in the first trimester, it is safest to not take anything, any drug, as the developing baby could be affected. Be especially careful. Check with your physician.

by hannah2010 (Jun 27)

Hi david
thanks that has really helped! I think when it is turned into real numbers it's easier to understand we can all grasp the concept of 89 in a million! but when they are in percentages I can'

by David Fitz (Jun 26)

Hi Hannah,
Congratualtions! Fertility and CML is complicated, as you know. For us guys it’s a whole lot easier and even then not always simple.
It’s worrying when someone newly diagnosed finds out
Category: Uncategorised

Replies: 4

Last updated: 22 November 2021
ipmaki on 9 May 2018

Category: Side effects

Replies: 30

Last updated: 28 June 2018

Pressure in Chest when Standing
by Liamsdad (Jun 28)

I am currently on 40mg of Sprycel and the only side effect at this dose has been dizziness until last week when I started to feel shortness of breath. A day later I continued with the short breath

by LouiseS (May 31)

My husband hasn’t experienced swollen lymph nodes in the chest but he did in his neck. It came and then went away after a few days. Then the swelling focused around his eyes and that was much

by hannibellemo (May 31)

Glad to read that you don't have any issues based on CT finding. On the other hand, I can understand the disheartening feeling...it's always nice to be able to put a name to something that is

by ipmaki (May 30)

I just wanted to follow-up on my CT scan for those interested. Turns out I don't have a pleural effusion. The results say "No CT evidence of acute cardiopulmonary process. No suspicious pulmonary
Category: Side effects

Replies: 30

Last updated: 28 June 2018
Gitel on 25 June 2018

Category: Uncategorised

Replies: 4

Last updated: 27 June 2018

Very Slow Response,withBCR ABL. Only 25% after 7 months. Very worried.
by Gitel (Jun 27)

You are right Romo. I have to keep telling myself to give it time. I have read enough to know how atypical my response is to the TKI. However, the clinical knowledge and experience of the physicians

by Gitel (Jun 27)

Thanks Louise. Mayo Clinic in Rochester Minnesota has top expertise, they are a major research, teaching, medical center. Also a major Cancer center in the USA. Your cautions and suggestions

by Romo (Jun 27)

Don’t fret. You have the rest of your life to beat this.
You have beat many things before.
Your in good hands.
Give this some more time.
Romo

by LouiseS (Jun 26)

Gitel I am not one of the experts on here but I just wanted to say, I am sure you are in good hands and best of luck for Thursday. Does the Mayo have a CML specialist ? I would be tempted to ask for
Category: Uncategorised

Replies: 4

Last updated: 27 June 2018