After 21 months on Gleevec I got a nice "red eye". I've had chronic bronchitis for a couple of months now and wondering if maybe the coughing might have caused it.
I'm trying very hard to balance the emotional with the rational lately. I have a few different things going on that keep making my mind wander. After my last PCR jumped up a bit from CMR to .004%, I've kept having this nagging feeling in the back of my head that "what if this was the first sign I am losing response". I know rationally that doesn't make any sense and even if I was it wouldn't make sense that things would change drastically. I figure even if I lose response, it wouldn't make sense that I would show any signs. CML is slow and it would take time to lose cytogenetic response and ultimately hematological response. Unless I transformed to BC overnight, this would be a slow process. I think it would be exceptionally rare to transform to BC after a year and a half of responding well (in and out of CMR). I suppose it could happen, but seems so unlikely. The more times I say it, the more I feel like I am trying to talk myself into it.
I just have this chronic nagging cough that won't let up. It started right after my last onc visit. I had a sinus infection and had to take an anti-biotic for it to clear up. The infection went away but I have this lingering dry cough. I can take a deep breath without any difficulty or pain, but the cough is continuous. I'm figuring it is lingering from the infection and seasonal allergies are aggravating it. It keeps messing with my head though because I know a number of people had a chronic cough before they were diagnosed due to high platelets. I never had that before dx though. So between the cough and the eye bleed - it's just messing with my mind a bit. My vision also seems a bit blurry, not real bad just seems like I have some "floaters".
Hoping this settles down soon.
Well there is certainly a lot of pollen floating around right now. That could be causing your persistant cough. I've been congested and coughing a lot and I'm sure it's all the pollen. Do you get heartburn often? That can make you cough too even when you don't feel like you've got heartburn. As for the eye issue, you could have "dry eye". I use "Systane Ultra". That helps with the little floaty things......
First, welcome to the red-eye club. Hope it heals fast. Next, no matter how we try, we cannot rationalize fear. As you probably know, it is controlled by the most primitive part of our brain. Fight or flight. That little almond has a nasty way of getting in the way of our higher-order thinking. Ugggggh! It is tough to deal with this when we are in the prime of our lives, so to speak. This is subject matter for those who are well advanced in years. Not fair. Sucks. Anyway, now that we have had a heavy dose of "we won't live forever" we gotta deal with this new reality the best we are able. Mortality was always there, but we ignored it (nothing like a bloody eye to remind you every time you look in the mirror what it comes from---ugggh, again). And as you know, (like I, "Ms. Freakout", should be talking, but...), PCRs bounce. Test not always on the money. And .004 is very low from what I understand. I have had a pretty noticable blip up to have it be a really good low the next. I have heard, (Trey?), that when the numbers get low, they tend to bounce around. You may go in and out of PCRU before you get anywhere near BC. AND you probably won't come near it. I know this is unscientific, but I feel you are a survivor. You will outlive your CML. I just feel it. And you cannot get jinxed by me saying that, because I said it, you didn't. Well, that, at least, is my hope for your future. Like you always tell me, 30 years from now, we will be wondering why we stressed out over this stuff.
Hope the bronchitis goes away fast too. It is hard to be coughing all the time, and it IS hard on the eyes. I was riding on an elevator before my bleed happened. Within days, it covered my whole eyeball, no white to be seen. But, it wasn't painful in the least. Just freaky. My husband, who is in perfect health (poo, poo), gets lingering coughs. He has a bad one now that he spread to the kids. I guess I am next. Uggggh. You could always go in for another CBC to check your counts (i.e. PLT). No matter how strong we are, (and you are very strong), we get these pangy sort of things running through our minds from time to time. How could we not? It is a difficult life-situation to be in. Take care. Hope you feel healthy and better in every way soon. And rootin' for PCRU again on your next PCR, or just another real good low.
Thanks all for the replies, I appreciate it. My self diagnosis is that I have chronic bronchitis from the sinus infection I had last month. It seems the infection cleared out but left me with very irritated bronchial passage. Roll in allergy season and I think the irritation is causing me to cough. Strangely I only cough when I am upright, I don't cough at night while lying down and the cough spells can spread out for a few hours with no cough at all. It's a tickle in the upper part of the lung and the cough is completely dry. I think all this coughing is what likely caused the eye bleed and the floaters. This is what a reasonable person would conclude and most likely the case. Of course the irrational side of me has crazy thoughts sneak in just to ruin my day. So I went ahead and called in to the onc to report the eye bleed, I mean I am supposed to call in any new side effects so I was able to tell myself I am not being a hypochondriac, I am doing what I was told to do. (Side note, I don't think anyone with cancer should ever be called a hypochondriac; I think we have earned the right to be paranoid about everything). Onc was more concerned about the cough than the eye bleed and said I should go get a chest x-ray to be safe. So a good dose of radiation for me! I told her if I am going to go through the trouble of going to get a chest x-ray then I want a CBC while I am there to rule out any platelet causes. She agreed to it but mostly I think to ease my mind. So I guess I'll know in a few days if there is any problem. In a way it will be good because hopefully nothing will be wrong and then I can call my GP and get some Advair or something like that to settle down the bronchitis. Now I just have to work these appointments around my visit with the surgeon tomorrow to see if I need hernia surgery. What the hell happened to my life? Friggin 39 years old and all I do is run from one health practitioner to another. I'm trying to keep a good attitude about it and most days I do, but man it can get it to you sometimes. Well enough of that, back to work.......
Lucky, as always you are taking care of business very well. Let us know your test results/what the doc says. The more we know . . .
Re the eye bleed: what's up with eye bleeds all of a sudden? I have my first one today, and I've been off medication for over seven months! I really get the feeling that there are things I can somehow still blame on CML and TKIs . . .
Hi Lucky: When it Rains It Pours!!! I always say that I never get just one thing at a time. I have had 2 very bad eyebleeds, and they only happened after I had been on my Gleevec for quite a few years. Took a long time for them to clear up, but they did. Its true the Pollen is so bad out there. We finally got a lot of rain over the weekend, and hoping that it got rid of some of it. I get the Bronchitis every single April. I was wheezing so bad one night, and my husband asked me if I was okay. The whole bit, runny eyes, congestion, etc. As soon as this all started I went and got my Allegra Allergy tablets. My doctor told me last year to take it as soon as symptoms started, and it was prescription back then. Now its over the counter. Its been working great for me. Good thing you are doing the chest x-ray. I insisted the one year that it was only bad Brochitis, but I also had Pneumonia. I do not know if you get the Pneumonia Vaccine, but since I have gotten it I do not go into Pneumonia. I hope you get all good test results on everything.
I did not realize your only 39, for some reason I thought you were older. My daughter will be 39 in Oct. I am feeling pretty old here.
You might have a constant nasal drip to cause the cough. I have the cough during the day, but its when I lay down at night that it gets worse. Drink some Tea and Honey. It helps me a lot.
Feel better soon.
Hang in there, Lucky. I totally understand how you feel re: seeing lots of doctors. I'm totally over it as well ... I rarely saw a doctor except for my annual physical, but now post-dx I see a hematologist, urologist (which I can't stand doing), ENT, foot doctor (running injury), etc. Some of the visits I've made over the past year have probably been due to Gleevec side effects and I didn't even know it. That's the frustrating part. Emory is pretty hands-off with me as well -- I just know that they are dealing with very difficult and challenging transplant cases, so a healthy, athletic & responsive guy with TKI side effects is probably low on their priority list. So for whatever reason, I don't feel comfortable bringing up stuff to the hematologist, so I've been hitting specialists instead when I think I'm dealing with something <shrug>.
BTW, you know that your swift response on Gleevec is better than optimal, and at the 2-year point, your odds of disease progression on therapy go down to like 0.2% or something. The chance that you will lose response at this stage is insanely slim.
We still need to connect and compare some notes ... will ping you soon!
It's broken blood vessels in the white part of the eye. You get a red spot in the eye and it usually "travels" as the blood dissipates. For some it can turn the entire white of the eye red and for others it can be a spot or in my case it was kind of a streak across the eye ball.
It's nothing tragic, and it doesn't hurt, just a bit unsightly.
Great visual Lucky, this is exactly what an eye bleed looks like but as you stated for some it covers the entire white of the eye. It is a scary thing to see, but thank goodness the worst part is the visual and it doesn't last long. Hope you are feeling better. Positive thoughts your way.
Call Me Lucky, I had two eye bleeds back in 2007. Went to the ER with one, broke a blood vessel. Doc washed it out and didn’t see anything wrong. Had another one not to long after that, went to the eye doctor and he asked me if anyone hit me, (NO) no damage to the eye. It was kind of strange, never had an eye bleed before, that is that I can remember. We were building a house, I wonder if I got some dust in it. But the eye doc said it would have taken a lot for the eye to look that bad. I don’t know, still think I got dust in it and rubbed it, then of course I always add CML/Gleevec to the mix. Who knows. I do know after we build the house and moved in, (jan 2008) no more eye bleeds.
Happy Birthday to your son, and may you see many more, including his wedding and grand children.
Glad you got a lot out of the way today. Humm acupuncturist, think I will check that out.
I am heavily into massage. Got my massage room fixed up, the room looks heavenly, my husband loves my massages, so even though I went over our financial budget, hubby gets the benefits, no complaining there. Now if I could just teach him to give me a massage, he does pretty good on the shoulders, that is about it.
I also purchased a foot bath massage yesterday, haven’t tried it out yet. Purchased an humidor today, too. Trying to think holistic. A little pampering never hurt. I did get me some Tumeric with 95% Curcuminoids. I think that might have been Scuba who suggested it. Worth a try. Now as for Philb remedy for the cough, Whisky Mac mixed with wine or the Rum, might be good for the throat & relaxing, but not sure I would want to try it, might wake up with a head ache.
I'm so sorry you have been having such a hard time. You just keep getting hit with one thing after another. This has been going on for months with you. I'm not surprised, that everything is catching up with you! I think we all get to that point at some time or another. It's hard enough dealing with losses, and stress, but then living with a disease like ours, we have just about reached our limit.
I got my first eyebleed right after my dx and I started on Gleevac. I barely remember those first couple months. I was just so sick and shocked, and I had that horrible onc telling me I wasn't sick, I just need to go home and relax and listen to classical music Uggg. But 3 weeks after dx I got pneumonia and I coughed so hard, I got an eyebleed. I was to sick to even worry about it. It's a good thing, because I'm the type of person who would have worried about getting an eye transplant.
I have had a chronic cough for over 20 years. It started out like I had to keep clearing my throat and it just kept getting worse and worse. My pcp gave me advair, and a cough medicine at first, but when I went back to her for more she wouldn't give it to me, I had to see a gastroentologist and he discovered my acid reflux, which was so bad it damaged my esophagus, so Nexium healed me, but I still have that horrible cough. A lot of meds cause a cough,Blood Pressure, Cholesterol, Sprycel, and a lot more. I'm on those 3 meds, I have advair,cough syrup, and sometimes I even have to take Sudafed. Also when I get nervous I cough.I get pretty bad coughing spells,mostly at night,from the reflux, sometimes I have to sleep in my recliner, we tried raising the bed a couple inches,then the wedge pillow, it helped my reflux,but it threw my neck out of wack. I like my recliner I can snuggle up in it and be nice and warm. Usually I get a tickle in the left side of my throat and that sets off a coughing spell. And sometimes I take a half of my nerve pill,and that helps relax my muscles! It's so annoying, but I spend a lot of time with my head under a pillow so I don't annoy Ron. I've had numerous chest x-rays, They are always clear.
Just relax and listen to classical music.(yeah right). Take care sincerely Billie
When I was still on 400mg of Gleevec I got up, got out of the shower and there it was, my left eye on the lateral portion was completely red. I think when I was in the shower I bent over and felt my heart beat in my head (you can hear that more if you are anemic). Luckily I had 4 days off work and it was just about gone by time I had to go back. I did not have that happen again. No harm done. Even though I am a nurse and know that this is not a big deal, I was scheduled to have my 2 year eye exam (actually 5 year) and I told them about the incident and they said it looked fine. This is unnerving no matter who you are and what your knowledge base is.
Take care of yourself.
It sounds like the red eye could definitely be aggravated by the chronic cough. But it shouldn't be anything to worry about. Once allergy season clears up and the cough dissipates, it should die down on its own. Here's what Dr. Gary Hirshfield has to say, if it helps!: https://www.healthtap.com/user_questions/29573-what-are-the-causes-of-ruptured-blood-vessels-in-eyes-what-can-i-do-to-help-it-heal. In the meantime, lots of eye drops!
Just wanted to check in and say hi. I am sorry you keep getting slammed with all these 'things'. I sure hope you can catch a few thousand breaks in the near future.
I had an eye bleed once, but it was because I had a hammer, a rock, and decided to split the rock in half. I did it, the rock fell to my constant blows, but as it split apart a small piece flew up and hit my right eye ball close to the corner. I was so happy about seeing inside the rock I forgot all about the eye situation. A bit later I went in the house and the entire side of my eye was red, it took about three weeks for it to completely be absorbed. A serious chewing out by the doctor about eye protection, another from my ex husband about responsibility (might have ignored that one a bit) and a serious chastising from my mother for being in my 20's and acting like a child. I did learn one thing, if you are going to be smashing rocks with a hammer, you either turn your head or shut your eyes as the hammer comes down. Oh, well yeah and don't forget those protective goggles that I never seem to be able to find.
Sending positive thoughts your way!
At least you are not like a guy I work with who keeps getting blister-like bubbles on his eye. It happens so often, his kids call him Bubble-eye Daddy!
I'm guessing the increased pollen is partly responsible for both the cough and the red eye. Just take care with the cough. My dh had a nagging cough for a few months, and then when he got an inevitable bout of strep from the kids, there was enough bacteria stewing down there that he ended up with pneumonia and landed in the hospital. So just keep an eye on the cough.
Sorry you have been so much in the wars. Lots of good advice from others, particularly the hayfever idea as it's well worth trying the hayfever meds just to see if it does help - I never had problems with hayfever in the past and now I get caught out every spring thinking I'm coming down with something when it's actually the pollen. Just watch out as some of the OTC hayfever drugs can interact with the TKIs.
On the bouncing counts it took me ages to get used to it. It helps to convince myself that my CML is stable, it's the PCR test that's fluctuating, not the underlying disease. That is almost certainly your situation ie you have a nice deep response which is stable at around the limits of PCR detection - a great place to be.
I don't have any suggestions for the eye bleeds. I got some early on myself and I do remember some mad person suggesting that eating oranges helped clear them up. A clearly insane idea with no scientific basis whatsoever. It is amazing some of the ideas that people come up with. The fact that mine cleared up quickly was, I am sure, pure coincidence. Nothing at all to do with the oranges I ate.
As regards the cough, I prescribe one of the following:
Whisky Mac - equal parts of scotch whisky and ginger wine; or
Rum and Aniseed - two parts dark rum to one part aniseed cordial
Each very good at soothing and relaxing both the throat and the patient.
Alternatively you could just spend your day horizontally!
Well yesterday was a medical gauntlet for me, I ran to have a CBC in the morning, I had a chest x-ray in the early afternoon, and then later in the day I met with a surgeon about a potential hernia.
Some good and some not so good but fortunately the stuff that matters most seems to be good so far. I just got a call from Onc's office and the CBC was normal, which is nice relief. I was concerned about platelets given the eye bleed, the fact that I started getting those red dots again on my trunk and arms (not petechiae, cherry hemangiomas), also the blood draw yesterday left me with a nice bruise on my arm which I usually don't get. Since the platelets are alright I am going to chalk it all up to coincidence and maybe as Trey has pointed out the platelet function just may not be as good.
I'm still waiting for results of chest x-ray but I really am not expecting anything there. Just needed to rule it out and then I will go to GP and see if maybe I can get some Advair or something like that to calm down the cough.
As for the surgeon, that could have gone better, but it's not too bad. The surgeon confirmed that while I had been told by two urologists that I do not have a hernia, I do in fact have one. He said it is small but enough that he can feel it. I'm not surprised since he was uncomfortably thorough compared to the other two lazy dopes who just said "turn your head and cough..nope no hernia". The surgeon took more time and as they say if you look hard enough for something you will find it, I now have a hernia - I think I will call him "Herny". Anyway the downside is he says I am not a candidate for surgery and doesn't have a whole lot to offer in the way of treatment. He said he can operate but based on his experience with this type of hernia he feels the surgery will not yield any benefit. He says it is more than likely I will still have the pain post-surgery and the hernia itself is not large enough to warrant surgery for repair. He said if I asked him to operate he would (typical surgeon) but he feels it's not worth it. He offered to do a nerve block where they will shoot a lidocain type mixture into the nerves in the area. He says sometimes it helps but it probably won't, but since it's pretty much zero risk it is worth a try. I told him I wanted to think about it before I do it.
So all in all not too bad, would be better if I could get relief from the hernia pain, but at least I know what it is and that it is not something serious. I've been seeing an acupuncturist for Gleevec side effects and when I told him about the hernia he started sticking needles in my abdomen each session - surprisingly it actually helps a bit so maybe I'll just stick with that for a while. On the upside my CBC is in good shape so I can sleep a little better tonight knowing that I didn't spontaneously transform to blast crisis overnight (rationally I knew that wasn't the case, but damn if those emotions can't get the best of your imagination sometimes).
Thanks for the responses I'm going to stop at the liquor store on the way home to try out one of PhilB's cocktails. Today is a special day - my little one is turning six today! I wasn't sure how many more of these I was going to see. Today I feel pretty good about seeing many, but it's definitely more special to me then it was before, which is hard to believe that is even possible.
Take care everyone.......
Those cocktail mixtures sound good. :). Might help with the hernia pain. Darned if you were right on that one! Makes me question ever seeing a urologist about anything...geez. What kind of surgeon did you see? Let me know what you decide re: pain relief...and I hope you feel better. And happy birthday to your 6 year old!
Dumb question. Do hernias ever heal themselves if left alone? Or is this something you have forever? Don't know that much about them.
Do you think the cough is allergy related? Lots of tree pollens out now. Saw allergist yesterday with my dd, she had enviro allergy testing and lit up to trees pretty strongly. They recommended keeping windows closed and avoiding outdoors during early morning hours since that is when the trees pump out the most pollen. If you are running in morning, perhaps that is exacerbating any allergies?
@Dan - After meeting with the urologist twice and paying a few hundred dollars each visit for the brilliant treatment advice of "try Advil" I called my GP and asked her what she thought I should do. She said "stop wasting your time with the urologist and go see a general surgeon". A general surgeon is well versed in many areas and they are usually tops in the medical field (it's hard to become a surgeon, they are usually pretty smart). Hernia is also one of the most common general surgeries performed. The surgeon was very thorough in his exam, talked to me about my CML and a bunch of other stuff, asked lots of questions and got me to remember all the things I wanted to tell him about my symptoms. That was good because the urologist would always just rush me out and I always left saying "I forgot to tell him about x, y, and z". Plus the urologist would just tend to roll his eyes when I would describe the symptoms, which made me want to jump off the table and punch him in the face. Not all urologists are bad, but while these two were pretty lousy, most of them I have found tend to be dismissive. So seeing the surgeon was good in helping to get validation on the diagnosis and it gives me options to consider beyond taking Advil and hoping it goes away.
@Traci - There are many different types of hernia, in this case I have an inguinal hernia, which is very common, especially in men and it does occur in women as well, although less frequently. There are two types direct and indirect. Indirect are related to (for lack of a better term) birth defects. They are a result of something not developing properly and usually show up in children. Direct hernias are the kind that develop as you get older. Typically these are the kind associated with lifting something heavy. While that doesn't have to be the cause there is usually something that causes a weakness and it may come on sudden or happen slowly over time. In my case it is hard to say. I first had an issue like this when I was about 13 years old. I was never diagnosed properly and they always just said it was the way I was built and it would be fine - try some Advil. I had a few episodes throughout my life where it flared up, always told the same thing. This time it won't go away so after a few months I pursued it more. Not sure if it has gotten worse over time or if unrelated to those earlier episodes but regardless I have to deal with it now.
Cough could very much be aggravated by allergies. As soon as I get the final word on the chest x-ray I will call my GP and see about getting some more allergy meds to try and calm it down. Apparently excessive coughing makes a hernia worse. I'm reminded every time I cough!
If I had chronic pain and a "small hernia" that did not require surgery, I would look for other causes, and perhaps obtain a CT Scan of the area.
BTW, Urologists have General Surgical training, but then Sub-specialize in Urologic Surgery. Of course, there is no excuse for being innatentive to the patient, no matter how busy. Frank
They want to stick a needle full of what? where? Run like He-- to the nearest liquor store, And follow Phils instructions for relief! Happy Birthday to your little one. They are so special at that age. Things are slowly but surely getting better for you. Take care, Sincerely Billie
Tears in the abdominal fascia don't heal themselves, they need to be fixed eventually. My swollen spleen gave me an umbilical hernia that's about the diameter of a pencil. The swollen spleen covered the tear so that nothing ever protruded from it until the treatment reduced the size of my spleen. I thought it was just a little muscle pull. It actually was the first of three trips to the doc over 5 mos for symptoms that were later discovered to be leukemia related.
I'm having surgery next week to have it repaired. Doesn't sound too bad. It's an outpatient procedure.