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EvaH on 7 February 2017

Category: Side effects

Replies: 4

Last updated: 18 April 2017

Update on my eye issues and side effects with Veenat
by EvaH (Apr 18)

I've now had an avastin injection in both eyes, leftie about one month ago and rightie one week ago. Vision problems seem to have completely cleared in the left, I still have some residual in

by EvaH (Mar 9)

Thanks Sandy!

I have since learned that high blood counts cause VEGF a protein which leads to neovessel proliferation in the retina - basically the starving retina grows its own vessels but

by sandy craine (Mar 9)

Good luck with the eye issues Eva... Please let us know how this additional therapy works,
Sandy

by EvaH (Mar 4)

Update 2: We ve moved on from lasers to treat my retina problems to an off-label use of Avastin injection to kill off all the abnormal vessels at once. At least I hope it will!
Category: Side effects

Replies: 4

Last updated: 18 April 2017
johnw1001 on 20 January 2017

Category: Treating CML

Replies: 5

Last updated: 18 April 2017

High Dose Glivec
by EvaH (Apr 18)

Curious about 61.4 WBC on diagnosis, is this the same as 614,000 /ml I wonder? What are the normal range of WBC using your measure (61.4)?
I ask because I try to figure out how badly off I was

by johnw1001 (Mar 24)

600mg Glivec leads to rapid regain of MMR and deep remission-update
Hi All,
Thanks to Eva and Bee for your responses and for the information on the impacts of higher dose Glivec.Just to update a few

by Bee (Feb 9)

Ted was on 800 mg of Imatinib for at least 2 years. He responded very slowly to 400mg for the first few years, never getting into single figures, but 800 mg sorted him out and brought his PCR

by EvaH (Feb 7)

ps: I also had 10 hours flying after diagnosis (with 2.5 million platelets) but no one thought to give me heparin....I wish they had, might have made my flight a little less nervewrecking :(
Category: Treating CML

Replies: 5

Last updated: 18 April 2017
cmljax on 19 February 2017

Category: Side effects

Replies: 9

Last updated: 10 April 2017

Skin Cancer - 7 and counting in 4 months
by David Fitz (Apr 10)

That must all feel encouraging - an excellent response to CML in a relatively short period of time.
Keep us up to date!
David.

by cmljax (Apr 10)

I am happy to report that after approximately 1 month on reduced Tasigna dose (from 600 to 450 MG), my PCR improved again from .006% to <.003%. The incidence of skin lesions has also

by cmljax (Mar 13)

After a lot of discussion with a lot of different people, some on this site and some on the LLS site, I decided to press my oncologist for a dose reduction from 600mg - 450mg after just 5 months on

by sandy craine (Mar 5)

I have sent you a private message today. It seems that there is some evidence of nilotinib and SCC but it is rare. You have a really good response to TKi therapy so you can be confident that
Category: Side effects

Replies: 9

Last updated: 10 April 2017
nozadze on 7 April 2017

Category: Uncategorised

Replies: 8

Last updated: 9 April 2017

Hope
by nozadze (Apr 9)

Thank you Sandy and all of you.
I hope everything will be ok. I wish you good health .

by sandy craine (Apr 9)

You should start therapy with imatinib as soon as possible after diagnosis. It depends on your fathers test results and whether he is in chronic stage or one of the later stages of this disease.

by sandy craine (Apr 9)

Hi,
I am sorry to hear your father has been diagnosed with CML - however, as Olivia and Chrissie have already said, imatinib is highly effective in treating CML and many of us on this forum have

by Olivia (Apr 9)

Hello
I don't think one month would make too much difference, but it is as well to get started on imatinib as soon as possible.
In the UK we are very lucky, we are given it by the NHS,
Category: Uncategorised

Replies: 8

Last updated: 9 April 2017
Daphne Lynn on 5 April 2017

Category: Blood tests

Replies: 2

Last updated: 6 April 2017

13 week test result
by Daphne Lynn (Apr 6)

Thank you Nigel for your reply. Following your information regarding the conversion rate and some more research this afternoon I feel confident that I now have the questions that I need to ask my

by nigel (Apr 5)

Hi Daphne, sorry to hear your numbers are not as low as recommended, however the first thing to find out is is this 24% raw number, or is it on the International Scale. For example the Hammersmith

by Daphne Lynn (Apr 5)

I was diagnosed with CML in December 2016 and was immediately prescribed Imatinib (400mg per day). I have just received my first molecular test result and following my research of CML I was
Category: Blood tests

Replies: 2

Last updated: 6 April 2017
blueyes74 on 17 March 2017

Category: About CML

Replies: 11

Last updated: 2 April 2017

Generic Imatinib
by chrissie (Apr 2)

That is an appalling error on the part of one of the hospital staff. To have caused you so much anxiety is not right and they should be made aware of this. Doesn't give you much confidence that

by David Fitz (Mar 30)

Wow - that is a large difference. So was it a clerical error somewhere, or were you just told the 0.2% figure verbally and someone misread the lab report?
Either way, good news and I am sure you

by blueyes74 (Mar 29)

It turns out the 0.2 was actually 0.029. I finally got a paper copy from the hospital.

by sandy craine (Mar 23)

Good news! - you must be very relieved.
As Nigel has already said, the move from the HH lab to another is most probably the reason for such a big change in your percentages! Nevertheless I agree
Category: About CML

Replies: 11

Last updated: 2 April 2017
jameskp on 19 March 2017

Category: Blood tests

Replies: 1

Last updated: 23 March 2017

CML patient for past 7 years last blood results shows Alpha-fetoprotein too high.
by sandy craine (Mar 23)

Hi Jams,
From a brief skim of the internet I have found the following information on raised levels of AFP and what that might mean. I hope the following is helpful.
Sandy
See links here

by jameskp (Mar 19)

Dear friends, My father diagnosed CML on 2010 and on imatinib til this date. He is 79 years old and 300mg imatinib worked fine for him so far. Apart from some digestion problem and nausea he is
Category: Blood tests

Replies: 1

Last updated: 23 March 2017
keithlatham55 on 18 March 2017

Category: Treating CML

Replies: 2

Last updated: 21 March 2017

cml re
by keithlatham55 (Mar 21)

yes and i understand that , i have spent many hours in waiting rooms looking round at people who have not been as lucky as me . my journey as been long and hard at times but the support i have had

by David Fitz (Mar 21)

Welcome, Keith!
Whilst unfortunately it's not the case for every patient, it's always great to hear from people who've been through a long and ultimately successful journey with CML.

by keithlatham55 (Mar 18)

hi just letting everyone know i'm a newbie on here and would like to share my experience regarding cml
i was diagnosed in 2002 .
Category: Treating CML

Replies: 2

Last updated: 21 March 2017
nigel on 6 January 2017

Category: Uncategorised

Replies: 14

Last updated: 18 March 2017

Generic Imatinib now being issued in the UK
by David Fitz (Mar 18)

Hi Nigel,
Digging up an oldish topic here, but in clinic the other day my doctor and I got talking on the topic of generic imatinib. At Barts they are still prescribing branded Glivec because of the

by David Ryner (Jan 25)

Just a brief word on pricing for generic imatinib to add to that already set out in the previous posts. I'm not an expert on what's called the 'dark art' of pricing but what follows

by ruddoug09 (Jan 23)

I've just received my first delivery of the new Imatinib, made by Sandoz. I'm in North East England but get my deliveries from Alcura.

The tablets look almost the same as the

by Olivia (Jan 22)

Thanks Sandy. I see from earlier in this thread that Sandos is part of Novartis, so I assume it's good news and there won't be much if any difference? Apart from price, that is.
Category: Uncategorised

Replies: 14

Last updated: 18 March 2017
MartinZA on 12 December 2016

Category: Treating CML

Replies: 9

Last updated: 16 March 2017

How important is MMR?
by David Fitz (Mar 16)

Hi Karen,
At CML Horizons last year, two doctors (Steve O'Brien and Giovanni Rosti) both spoke about 1% being a good rule of thumb as a "safe" spot. For example, if they had a patient

by karen (Mar 16)

Hi Martin
If it's any help there is a lot of thinking that anything below 0.5 is 'safe', certainly David Marin has suggested that is the better figure to be more concerned about.
I have

by MartinZA (Mar 16)

Hi David
Thank you so much for the reassurance! I am sure that I will get lower, but I fear I will never truly relax until I reach that 0.1%, which seems so arbitrary yet is so very important

by David Fitz (Mar 13)

Hi Martin,
I understand you're disappointed, but the reduction from 0.36 to 0.24 is a 33% drop. You've wiped a full third off your previous result. Not to be sniffed at!
David.
Category: Treating CML

Replies: 9

Last updated: 16 March 2017
chrissie on 10 March 2017

Category: Side effects

Replies: 4

Last updated: 14 March 2017

Bone density
by chrissie (Mar 14)

Thanks, Sandy. I shall definitely look into this.
Best Chrissie

by sandy craine (Mar 11)

Hi Chrissie... sorry to hear you are having ongoing problems since you broke your arm. Not sure how to respond other than to suggest you take a look at natural progesterone cream and the link

by chrissie (Mar 11)

Thank you, Olivia. I think that as well as sex education in schools, they should teach kids what getting old is like so they, at least, are prepared!!
Best
Chrissie

by Olivia (Mar 11)

Hi Chrissie
I haven't had any breakages - I just wanted to say that I'm sorry you have had all this to cope with. I'm sure you will let us all know how you get on.
Best
Olivia
Category: Side effects

Replies: 4

Last updated: 14 March 2017
sprycml on 27 February 2017

Category: Side effects

Replies: 7

Last updated: 11 March 2017

Itching in ... sensitive places?
by sprycml (Mar 11)

Thanks everyone! Glad to know I'm not the only one. Will definitely be trying some of these remedies.

by davewell (Mar 10)

Sprycml, I had exactly the same problem, same exact areas. I am on 140mg Sprycel.
For, ahem, the front:
One thing that helped me a lot was using 100% cotton underwear; I believe because

by sandy craine (Mar 9)

Hi Adolfo,
I am not surprised that the cream you used has helped with the itching you have experienced as a side effect of taking nilotinib as it is a (synthetic adrenocorticosteroid for

by Adolfo (Mar 6)

I had these problems on my anus. I was getting crazy. I used several products recommended by doctors and nothing worked. One day, after taking a shower, I decided to use a cream that I use for the
Category: Side effects

Replies: 7

Last updated: 11 March 2017
Tasha on 10 March 2017

Category: About CML

Replies: 8

Last updated: 10 March 2017

Enlarged spleen from CML
by davewell (Mar 10)

On my hospital hematology area, monday is CML day; most people come in as a father/mother son/daughter couple, and usually the elderly is the patient. With me and dad, it's the opposite.

by Tasha (Mar 10)

I am 29 and also in the same phase as you were when diagnosed. The sprycel seems to be working so far. When they put my dose back up to 140mg I will have to figure out how to cope with the side

by Tasha (Mar 10)

I am 29 and also in the same phase as you were when diagnosed. The sprycel seems to be working so far. When they put my dose back up to 140mg I will have to figure out how to cope with the side

by davewell (Mar 10)

I actually am at 140mg Sprycell, because CML was diagnosed in the accelerated phase, on April 2016.
I believe it was borderline chronic/accelerated, but of course doctors tend to err on the
Category: About CML

Replies: 8

Last updated: 10 March 2017
EvaH on 11 December 2016

Category: About CML

Replies: 9

Last updated: 10 March 2017

Hello Everyone
by David Fitz (Mar 10)

Hi Eva,
ALT is an enzyme made in the liver, also called SGPT. Elevated levels may be a sign of liver toxicity (hepatotoxicity).
You'll notice that in posts on this forum some words are in blue

by EvaH (Mar 9)

Thanks for that. What does ALT mean?

Sorry to hear about your other troubles. I read that Imantib can make you more sensitive to sun, dont know if the same is true of Tasigna but if so it

by cmljax (Feb 19)

I quit drinking long before CML Dx (9-2016) and I wouldn't get anywhere near it while I'm on Tasigna. I was MMR in 83 days and I attribute that to very good fortune, strict adherence to

by EvaH (Jan 12)

I've been using TasiTrack which was designed for Tasigna

Thanks, I decided to slip the schedule as I was in Asia for a month. Then I had a retinal hemohrage and the doc said to
Category: About CML

Replies: 9

Last updated: 10 March 2017
sg3 on 21 February 2017

Category: Uncategorised

Replies: 3

Last updated: 4 March 2017

Travel holiday insurance
by fehr (Mar 4)

I have an HSBC Gold MasterCard which includes annual multi-trip travel insurance (I think Aviva) including skiing at a charge of £150 per year. No need to use the card for

by Helenabrown (Feb 21)

World First ,my husband has cml ,on nilotinib dx 18mths ago, not quite at mmr yet. We have full cover year worldwide for good price

by Dennis (Feb 21)

Hi, there is a post further down this page about travel insurance without screening.

by sg3 (Feb 21)

Hi does anyone have any insurance company recommendations for a winter sports holiday flying from the uk to europe for a week.

Gleevec started may 2016 changing to tasagnia jan 2017 .2nd stage
Category: Uncategorised

Replies: 3

Last updated: 4 March 2017
sandy craine on 22 January 2017

Category: Uncategorised

Replies: 5

Last updated: 2 March 2017

Good news - NHS England have reversed their initial refusal to fund second transplants
by johnw1001 (Mar 2)

Hi Sandy,
Just had a mail from Change.org expanding on the news that NHS England have reversed their decision re. second transplants.Apparently 167,000 people signed the petition and donations were

by Richard42 (Feb 27)

Really good news.

by David Ryner (Feb 27)

NHS England have just put up a media release on their website announcing they have reversed their decision to withdraw funding for second allogeneic stem cell transplants. There were some news

by chrissie (Jan 25)

Much better new for Sasha. Just had an email from Change and the hospital are booking her in for a BMT in 4 weeks. She is still around £40k short of the £130k but whether she will need
Category: Uncategorised

Replies: 5

Last updated: 2 March 2017
jilu on 21 November 2016

Category: Blood tests

Replies: 5

Last updated: 2 March 2017

understanding BCR-ABL levels
by jilu (Mar 2)

HI Sandy,
Thanks for your quick response .

I started dasatinib 3 months back , is exactly when I had my PCR test . I am doing PCR tests every 3 months.
Regards,

Jilu

by sandy craine (Mar 1)

Hi Jilu,
Well you have obviously responded to dasatinib as your Bcr/Abl level has reduced considerably. If this result is from a sample given 1 month ago (2 months from starting dasatinib?)

by jilu (Feb 27)

Hi all,
Here is my latest bcr-abl results . Initially I was on imatinib 400mg but changed to dasatinib 100mg daily 3 months back due to severe bone and muscle pain. Latest bcr-abl shows 4.9781% on

by EvaH (Dec 11)

This primer is JUST was I was looking for, thanks Sandy!
Category: Blood tests

Replies: 5

Last updated: 2 March 2017
carolinephilips76 on 27 February 2017

Category: Treating CML

Replies: 1

Last updated: 27 February 2017

DIGNOSIS OF CML
by David Fitz (Feb 27)

Hi Caroline,
Without getting too technical, the PCR test was likely performed on your brothers blood, whereas the biopsy would have been on bone marrow.
These days blood tests are very

by carolinephilips76 (Feb 27)

my brother has been dignosed cml 18 days ago on the basis of PCR test. onward bone merrow aspiration and biopsy done .what is difference between PCR TEST AND BIOPSY.
Category: Treating CML

Replies: 1

Last updated: 27 February 2017
Richard42 on 27 February 2017

Category: Uncategorised

Replies: 0

Last updated: 27 February 2017

Brighton Marathon for Hammersmith
by Richard42 (Feb 27)

https://www.justgiving.com/fundraising/Richard-Willoughby
Hi all
A little while ago Sandy posted about the new Blood Fund at the Hammersmith Hospital, supporting the haematology department that
Category: Uncategorised

Replies: 0

Last updated: 27 February 2017
chrissie on 25 February 2017

Category: Uncategorised

Replies: 0

Last updated: 25 February 2017

2nd transplants
by chrissie (Feb 25)

Good to hear that at last the NHS has agreed to fund 2nd transplants. Sad for those for whom this decision has sadly come too late.
Best to all
Chrissie
Category: Uncategorised

Replies: 0

Last updated: 25 February 2017