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Uncomfortable Sunken Eyes


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#1 jjg

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Posted 20 November 2013 - 06:59 PM

Hi Everybody,

I've been on tasigna now for 13 months and this (uncomfortable sunken eyes) has been a problem since the start. As with other side effects it cycles in severity. I was previously on Gleevec for 13 months and had quite a bit of the puffy G eyes. Now I have the inverse problem. I wonder if the tissue in that area has been damaged. I wake up looking normal and as the day progresses my eyes get more and more sunken. Sometimes by the end of the day it looks and feels as if I could stick my fingers round the back of my eyeballs - obviously not but it sure looks bad. The eye socket bones above the eyes become very pronounced. It feels uncomfortable like a sinus type headache.

Anybody else have this problem???? My doctors seem to think this is an "interesting" possible non-serious side effect - i.e. You're strange / suck it up princess.


Dx Dec 2010 @37

2x IVF egg collection

Glivec 600 & 800mg

PCRU March 2012

Unsuccessful pregnancy attempt - relapsed, 3 months interferon (intron A), bad side effects from interferon

Nilotinib 600mg Oct 2012

PCRU April 2013, 2 years MR4.5 mostly PCRU with a few blips

April 2015 stopped again for pregnancy attempt (donor egg), pregnant first transfer, 0.110 at 10wks, 2.1 at 14wks, 4.2 at 16wks, started interferon, slow dose increase to 25MIU per wk, at full dose PCR< 1 for remainder of pregnancy

Healthy baby girl Jan 2016, breastfed one month

Nilotinib 600mg Feb 2016

MMR May 2016

PCRU Feb 2017


#2 mariebow

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Posted 20 November 2013 - 07:51 PM

Jig I hope someone here can help you with that.  To me it seems that it really need to be looked into more.



#3 Susan61

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Posted 20 November 2013 - 08:11 PM

HI:  Hope they can figure out something for you.  I am on the Gleevec, and have those puffy eyes constantly.  Especially my right eye because I sleep on my right side.  I get up in the morning, and I need icepacks sometimes.  Maybe someone else who is on Tasigna can relate to your issue.  I have not heard of this problem from anyone else.



#4 Cliffee

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Posted 21 November 2013 - 09:29 AM

I too was on gleevac and had puffy eyes all the time. Also had occasional cramps. Have been on tasigna and since march 2013 and eyes are fine, cramps are gone. No side effects at all. Eyes look great. I feel very lucky as far as that's concerned.

Have you had a blood panel done? Are you sleeping at least 7-8 hours a night? Do you get in the sun at least 10-15 minutes a day?

If you are deficient of anything (vitamins, minerals)  that could easily be the problem.



#5 Trey

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Posted 21 November 2013 - 11:44 AM

You went through stages to get to this point.  It is possible (I don't know) that since you went from normal, to CML pre-treatment, to Gleevec puffy, to Tasigna non-puffy that you do not remember what normal was years ago.  Your weight may have changed (less).  Take a look at some old photos and consider any weight changes.  There is a layer of fat behind the eyeball which cushions the eye from the boney structure.  Weight loss can affect the size of the fatty area and cause the eyeball to recede.  Eat more chocolate ice cream. 

Otherwise, I would suggest a complete eye health examination.  There are various issues that can occur (with or without TKI drugs) such as loss of eyeball fluids (vitreous & aqueous humor). 

http://www.ophthoboo...hapters/anatomy

http://www.healthlin...d-aqueous-humor

http://www.nei.nih.g...us/vitreous.asp



#6 jjg

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Posted 21 November 2013 - 07:27 PM

Thanks for the replies guys -  I'll chase it up with a little more vigor. I do remember that when I was on interferon for 3 months between gleevec and tasigna I had headaches behind my eyes. I also had scary complex migraines which disappeared entirely as soon as I stopped interferon. The eyes didn't appear sunken on interferon then but they (along with  much of my body) hurt. Other than that my weight hasn't changed much. I think that I still have a few fluid issues with tasigna - last week one night I had to pee every hour and dropped nearly 2kg. It's since that little "pee feast" that my bug eyes have been bugging me.

If the picture insert works below are my three eyes: 2009-me, 2011-gleevec, 2013-tasigna.

eyes.png


Dx Dec 2010 @37

2x IVF egg collection

Glivec 600 & 800mg

PCRU March 2012

Unsuccessful pregnancy attempt - relapsed, 3 months interferon (intron A), bad side effects from interferon

Nilotinib 600mg Oct 2012

PCRU April 2013, 2 years MR4.5 mostly PCRU with a few blips

April 2015 stopped again for pregnancy attempt (donor egg), pregnant first transfer, 0.110 at 10wks, 2.1 at 14wks, 4.2 at 16wks, started interferon, slow dose increase to 25MIU per wk, at full dose PCR< 1 for remainder of pregnancy

Healthy baby girl Jan 2016, breastfed one month

Nilotinib 600mg Feb 2016

MMR May 2016

PCRU Feb 2017


#7 Catopounce

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Posted 21 November 2013 - 07:55 PM

I was diagnosed at the end of September of this year. I've been on Gleevec 400 mg for nearly two months. No eye problems until TODAY. My right eye only, is a little puffy above the lid, similar to your Gleevec pic. It's also tearing (as in tears when you cry) I wear glasses so it's not that noticeable, but need to get it checked out. Darn , thought I'd escaped the dreaded puffy eyes  and only had to deal with a rash on my chest, back, and shoulders that has calmed down a lot. I guess these side effects can spring up any time? And why only one eye?



#8 GerryL

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Posted 21 November 2013 - 08:29 PM

If you take your Gleevec at night, you might find that you sleep on one particular side during the night. Susan mentions this happens to her in her post above.

I started out will little side effect apart from the rash and gradually others started to appear. Some hung round and others only appeared for a period once or twice and then disappeared.



#9 Catopounce

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Posted 21 November 2013 - 08:47 PM

Hi Gerry, Thanks for your post. Yes, I read above about the puffiness related to which side one sleeps on. Anyway, I shouldn't complain about anything, Gleevec is a miracle and I've responded very well to it so far! Good to be able to "chat" on this forum, and Trey's blog is such a comprehensive source of information!



#10 Trey

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Posted 21 November 2013 - 09:27 PM

jj,

Wow.  Interesting.  Sorry. 

It looks like (remember -- I don't know) bone reformulation.  TKI drugs can definitely affect bone reformulation, but I have not seen or heard of such structural changes as appear to have occurred.  Or it may be something else, but you should contact Dr Hughes and discuss this with him.

http://www.adelaide..../timothy.hughes

You should definitely pursue this to get answers.  I would suggest a complete eye exam and cranial CT scan. 

http://www.nlm.nih.g...icle/003786.htm



#11 Rissa

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Posted 22 November 2013 - 12:53 PM

There is quite a noticeable difference.  You really should see an eye doctor and bring those pictures with you to your appointment.



#12 jjg

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Posted 23 November 2013 - 05:13 AM

Well I think I'm glad you guys think it's noticeable. I have wondered if anybody would ever say anything at work but realize now that I work with engineering academics - they notice if I get a new tablet or laptop, but  not if I have significant bruising to 1/4 of my face. I tested that one last month after I got smacked in the face operating a wood chipper.

Yesterday I had the eyes checked out by my optometrist and while she is not an ophthalmologist she is extremely careful and has actually taken the time to read up on all the side effects of each of the drugs I have taken. She tested me for about 40mins and said everything about the eyes seems fine. Next stop the health service to see my GP. While I've showed my hematologist pictures I always see her early in the morning when I look relatively normal. So yesterday afternoon was the fist time a doctor had actually seen it. He agreed that it was definitely weird and wasn't surprised that it is uncomfortable. He was also extremely straight in saying that he had no idea what to do about it. Nothing else about me - normal hydration, thyroid, other apparent good health is consistent with the eyes. The only nqr thing about me at the moment is my resting heart rate - 35bpm this morning. I believe an echo cardiogram was normal but will see the cardiologist in a couple of weeks.

So I get back to nagging the hematologist - she has asked Tim Hughes about me in the past. I don't have an appointment for 3 months but she has been sitting on my latest PCR results for at least 2 weeks so she deserves a bit of nagging. I was able to get the PCR from the GP and it went back up from PCRU to 0.004 or 4.4 log reduction. The resolution of the test is 4.5 log so clearly this is not a particularly significant increase. Never the less I'm not best pleased. I explained the PCR results to my GP and after confessing he couldn't help me with the eyes he was nice enough to bulk bill me for the appointment (means $0 out of pocket).

I'll keep asking and if I learn anything new I'll post it back here.


Dx Dec 2010 @37

2x IVF egg collection

Glivec 600 & 800mg

PCRU March 2012

Unsuccessful pregnancy attempt - relapsed, 3 months interferon (intron A), bad side effects from interferon

Nilotinib 600mg Oct 2012

PCRU April 2013, 2 years MR4.5 mostly PCRU with a few blips

April 2015 stopped again for pregnancy attempt (donor egg), pregnant first transfer, 0.110 at 10wks, 2.1 at 14wks, 4.2 at 16wks, started interferon, slow dose increase to 25MIU per wk, at full dose PCR< 1 for remainder of pregnancy

Healthy baby girl Jan 2016, breastfed one month

Nilotinib 600mg Feb 2016

MMR May 2016

PCRU Feb 2017


#13 Guest_billronm_*

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Posted 23 November 2013 - 10:46 PM

I gotta say it, I just can't help myself, your eyes are sunken because you are now squeezing 3 eyes in an area that normally had 2 eyes. Before cml.

                                                                                                                      sincerely billie

I have a hard time with dry eyes.



#14 Pin

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Posted 27 November 2013 - 12:02 AM

Hey jjg, I'm sorry to hear about this - it seems like all of the drugs can have some sort of impact on our eyes - I suffer from terribly dry eyes (and the good old Gleevec puff-eye), I had to have punctal plugs put in recently - it has helped a lot, but I can't help but feel like these sorts of things are happening way before they should!

Anyway, something I'm wondering about is, does it feel like actual bone changes around your eye - or is it more than they have shrunk back a bit and it just appears this way? It sounds to me like the 'pee feast' may have drained you of all your surplus 'fluid' - I get quite dramatic fluctuations in eye appearance depending on how much salt I eat (I can reduce the eye and everywhere else puff by eating a very, very low sodium diet - if I break it though with some delicious food, the puff comes back and I look very, very different the next day). The other thing that alters it is synthetic hormones, these can make me a bit puffy as well and there's a noticable change when off them. I wonder it there such a thing as a reverse diuretic? Or is that just eating a lot of salt??


Diagnosed 9 June 2011, Glivec 400mg June 2011-July 2017, Tasigna 600mg July 2017-present (switched due to intolerable side effects, and desire for future cessation attempt).

Commenced monthly testing when MR4.0 lost during 2012.

 

2017: <0.01, <0.01, 0.005 (200mg Glivec, Adelaide) <0.01, 0.001 (new test sensitivity)

2016: <0.01, <0.01, PCRU, 0.002 (Adelaide)

2015: <0.01, <0.01, <0.01, 0.013

2014: PCRU, <0.01, <0.01, <0.01, <0.01

2013: 0.01, 0.014, 0.016, 0.026, 0.041, <0.01, <0.01 

2012: <0.01, <0.01, 0.013, 0.032, 0.021

2011: 38.00, 12.00, 0.14


#15 pamsouth

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Posted 27 November 2013 - 12:27 AM

You mention low sodium.  Docs keeping telling me that.  Recently went to cardio and kidney doc.  Kidney doc says bad kidneys due to high blood pressure, inflammation, eat low sodium.  I say been on blood pressure pills and diruetics since 1997.  He says still causes inflammation.  Didn't think of it tiill I got home, but my labs have shown low sodium and potassium for years, I assume it was from diuretics.  Now go figure that one, low sodium on labs for years but tell me to restrict sodium.  The truth beknown, I don't believe it is from sodium or blood pressure, I believe it is from the Gleevec, but no doc is going to admit to that.  Well I take that back I recently went to my cardio doc.  I said  You know funny thing but I was off Gleevec, and all my med's for two months, no high blood pressure no swelling of hands no puffy eyes.  Than I went back on gleevec and after a few weeks, all the same problems.  But doc always says it is not gleevec.  The cardio doc smiled and he said, but no doc is going to admit to the toxic side effects and kidneys because of meds they put you on"  (inless of course they want to put you on a more expensive drug that needs more guinea pigs)  He was the most honest doc I have had in a long time.  In fact it is funny the lab they try to hide from you.  My new primary gave me several pages of labs.  But when I looked it up on the portal, it showed a page with the iron levels and my ferritin was way, way out of range, almost double what it should be, strange he forgot to give me that page.

Just saying, they (docs) don't tell you or admit to a lot of things.  Still fell like the guinea pig.  Was told 8 years ago there would be a cure right around the corner.  Truth being I will be on one of these drugs rest of my life, they might as well tell it straight.  Also they don't want to admit anything wrong with kidney, yet GRF it is in black and white, and I am over 65 years, I can't take these standard dose drugs!!!!   Even the pharmacy told me, don't be taking any standard dose with your age and kidneys.  Than they (docs) say creatine good, but kidney doc says cretatine doesn't get bad until you lose 65% or more of the function of your kidneys. I guess the CML docs rule over all the other docs, but I put my kidneys and vital organs right up there.  I ask cardio doc now how long do you think I would live on a kidney dialysses with CML and these drugs.  Cardio doc says not long!!  I think it told it straight course noone else in the room just me and him.  He would probably never admit that to anyone else.

Sorry but after riding this rodeo for 8 years lot of things they don't tell you about and even fib to you about.  Cardio doc said your just doing your own study right, yep that right.  I am going to die of something and I figure it might as well be with a quality of life what time I got left and sitting on the beach or at the crab shack with some freash sea food.

Just saying in my humble opinion it most generally is these toxic pills.  Low dose for me.  Yea why don't they don't studies with low dosage even if you are not PCRU, as long as you stay stable in a range.  Even my vet's tech nurse who was an oconology nurse said the same thing.  So did the nurse at St Vincent Hopital when I went to see my brother.  Toxic drugs, go for the low dose!!


PamSouth


#16 jjg

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Posted 27 November 2013 - 06:43 PM

Ha Ha billy - I'll give you 2/10 for humor but 8/10 for effort. I'm still in exam marking mode.

I have two dry eyes "too" but had them (all two of them) pre-CML - that's not even funny :-)


Dx Dec 2010 @37

2x IVF egg collection

Glivec 600 & 800mg

PCRU March 2012

Unsuccessful pregnancy attempt - relapsed, 3 months interferon (intron A), bad side effects from interferon

Nilotinib 600mg Oct 2012

PCRU April 2013, 2 years MR4.5 mostly PCRU with a few blips

April 2015 stopped again for pregnancy attempt (donor egg), pregnant first transfer, 0.110 at 10wks, 2.1 at 14wks, 4.2 at 16wks, started interferon, slow dose increase to 25MIU per wk, at full dose PCR< 1 for remainder of pregnancy

Healthy baby girl Jan 2016, breastfed one month

Nilotinib 600mg Feb 2016

MMR May 2016

PCRU Feb 2017


#17 jjg

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Posted 27 November 2013 - 07:01 PM

Hi Pin, hope you are doing well. I just googled punctal plugs - they look like fun. I agree about feeling older than we should, but I just keep plugging away at keeping fit despite spending more and more time rehabing injuries.

It seems as if I have lost the fat pad in the region above the eyes. I don't think it's bone but you can see bone where you shouldn't be able to, except in the morning when it is filled with fluid. I believe that it's called enophthalmia - condition that usually affects older people... sigh.

For me glivec was way more sensitve to eating salt that tasigna. Since moving to tasigna I've stopped reading the sodium content on labels.

By synthetic hormones do you mean the pill?


Dx Dec 2010 @37

2x IVF egg collection

Glivec 600 & 800mg

PCRU March 2012

Unsuccessful pregnancy attempt - relapsed, 3 months interferon (intron A), bad side effects from interferon

Nilotinib 600mg Oct 2012

PCRU April 2013, 2 years MR4.5 mostly PCRU with a few blips

April 2015 stopped again for pregnancy attempt (donor egg), pregnant first transfer, 0.110 at 10wks, 2.1 at 14wks, 4.2 at 16wks, started interferon, slow dose increase to 25MIU per wk, at full dose PCR< 1 for remainder of pregnancy

Healthy baby girl Jan 2016, breastfed one month

Nilotinib 600mg Feb 2016

MMR May 2016

PCRU Feb 2017


#18 Pin

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Posted 30 November 2013 - 05:11 AM

Hi Pam, yes it's funny how it works, but I wonder if with diuretics, the more sodium you eat, the more you would lose!

I keep asking for diuretics to just take occasionally, but the doctors are very reluctant, I guess because you can lost salts, magnesium etc through the fluid loss - still, even if I just took them occasionally, it would make my life a lot easier.

I'm not sure about the cause of your kidney problems, but I do agree with you, I think sometimes it's possible that our drugs can cause side effects that may have flow on effects to other parts of our bodies. I guess it is about finding a balance, maximsing the good effects of the drugs on our CML, whilst reducing the effects on everything else!


Diagnosed 9 June 2011, Glivec 400mg June 2011-July 2017, Tasigna 600mg July 2017-present (switched due to intolerable side effects, and desire for future cessation attempt).

Commenced monthly testing when MR4.0 lost during 2012.

 

2017: <0.01, <0.01, 0.005 (200mg Glivec, Adelaide) <0.01, 0.001 (new test sensitivity)

2016: <0.01, <0.01, PCRU, 0.002 (Adelaide)

2015: <0.01, <0.01, <0.01, 0.013

2014: PCRU, <0.01, <0.01, <0.01, <0.01

2013: 0.01, 0.014, 0.016, 0.026, 0.041, <0.01, <0.01 

2012: <0.01, <0.01, 0.013, 0.032, 0.021

2011: 38.00, 12.00, 0.14


#19 Pin

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Posted 30 November 2013 - 05:21 AM

Thanks, yeah I'm actually doing quite well at the moment generally - which explains why something relatively unimportant is bothering me so much. Hey, if I don't have results to worry so much about, what can I think of next! Still not undetected, but I am working on it, haha ;) Yes, I mean the pill - I never really noticed it pre-glivec, but now I suppose probably mainly as I am so sensitive to noticing it, I notice it that much more when I am off it.

Yeah, the plugs aren't too bad really, they are doing a fantastic job on my eye dryness, just briefly uncomfortable getting them in, in the first place. Hmm, I wonder if it is the fat pad - that probably wouldn't be affected by fluid all that much though I would guess?


Diagnosed 9 June 2011, Glivec 400mg June 2011-July 2017, Tasigna 600mg July 2017-present (switched due to intolerable side effects, and desire for future cessation attempt).

Commenced monthly testing when MR4.0 lost during 2012.

 

2017: <0.01, <0.01, 0.005 (200mg Glivec, Adelaide) <0.01, 0.001 (new test sensitivity)

2016: <0.01, <0.01, PCRU, 0.002 (Adelaide)

2015: <0.01, <0.01, <0.01, 0.013

2014: PCRU, <0.01, <0.01, <0.01, <0.01

2013: 0.01, 0.014, 0.016, 0.026, 0.041, <0.01, <0.01 

2012: <0.01, <0.01, 0.013, 0.032, 0.021

2011: 38.00, 12.00, 0.14


#20 GerryL

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Posted 30 November 2013 - 06:32 AM

I've lost the bit of puffiness I had in my face from the fluid, but still seem to get a bit around the ankles. Mind you I'm not watching my salt intake anymore and actually had a packet of chips the other day - first packet in three years. Women are more prone to fluid retention, so maybe I'm stuck with it permanently, but to a lesser degree now.






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