Has anyone experienced high blood pressure after Gleevec use and/or diagnosis? Before diagnosis and before Gleevec, my blood pressure had always been low normal. Now it is high. I was 130/67 yesterday. I have had a deafening rushing in my ear for the past month. I am very underage to get high blood pressure, but I know it happens. It does NOT run in my family and neither does heart disease. I am underweight, and have eaten a low sodium diet for many years. I never ate sugar in large amounts, but I am now trying not to eat any added sugar. Usually, I get a lot of exercise. I am mostly vegetarian except I eat a fish about 2-3 times per week. I rarely eat beef or chicken. Is there a correlation between low blood counts, CML, anemia and high blood pressure? Gleevec use? My pressue since Gleevec had been 120/80 which is high for me. It gets higher each time I check in with onc.
Your numbers are not that high, and blood pressure can fluctuate rapidly during the day. Just thinking about having your blood pressure checked by a "white coat" can raise blood pressure during the procedure. So it is best checked several times per day for the most accurate reading. But anemia can cause something called Isolated Systolic Hypertension, where only the systolic blood pressure (the first number of the blood pressure measurement) is high, and the diastolic blood pressure (the second number) is relatively normal. That describes your issue. This is caused by a decreased number of red blood cells in the blood. It should be reversed by simply making more red blood cells, so hurry up with that.
Thank you Trey. If anyone had an answer, it would be you! I was thinking it must be related to the anemia somehow, although I had no support for my thinking. I have been health conscious for a long time. It was a shock to be diagnosed with CML (well, gee, who wasn't). My PCP, who specializes in preventative medicine, called me and said she was sorry and did not know what went wrong. And I am rarely calm walking into the onc's office. Now looks like a good time to buy that blood pressure machine for home use.
It is hard to believe people actually took the time to produce a video(s) on PCR and such. It sure makes light of a heavy subject. Gotta keep laughing.
Platelets on the upswing (50 thou). Onc left me a message that she hopes this is the start of my bone marrow healing. Very thoughtful. Still waiting to hear the PCR results. Like Phil said, (I think it was he), now we have our answer as to why the results take so long.
My doc told me it is the second number (the diastolic rate) which is the issue as it represents constant pressure on the system.
My blood pressure actually came down and I'm no longer on blood pressure medication after starting Gleevec. It does go up though when my fluid retention is at its worst. Fluid tablets generally have some BP med in them to help with this.
Got my fingers crossed for you results.
I was wondering if you had any more issues with your hypertension. My BP was always 110/60 ish. I was started on Gleevec Feb 2011 with a normal BP within 6 months I was running around 150/95 ish. I was started on Lisinipril, my ONC said he has seen patients on Gleevec get increased BP. So needless to say today (i woke up with a broken blood vessel in my eye for the 2nd time) I went to work my BP was 153/103 followed by 170/100 2 hours later. I called my PCP and the cancer center, they both agreed to double my BP medication and check my BP at work twice daily and fax them the results on Friday. This is interesting that I would just "develop" hypertension. As like you, I am the correct weight, don't smoke, no added salt ever, no soda, limited processed foods and I am active. So at 53 this is a surprise.
One thing with CML it keeps coming up with something new to keep you on your toes.
The connection between TKI drugs an anemia is that the TKI drugs tend to cause anemia, which in turn causes the heart to work harder. The body needs more oxygen due to fewer RBCs and/or low HGB or HCT. So the heart pumps harder and faster to supply enough oxygen. This should normalize somewhat over time, unless the TKI induced anemia becomes a long term issue. But this type of high blood pressure is not considered to be as significant an issue as constricted artery high blood pressure.
I always had low bp, before dx 5 years ago, my bp started creeping up after I started Gleevac, then when I went on Sprycel my rbc count went down. Then my iron went down, so I had to have those iron infusions last summer, after the 4th infusion last Sept. I had an allergic reaction the drug they were using to bring my iron count up, I ended up in the er for a while my bp was 187/90 something, since then I'm having a problem with my hbp. The week after my allergic reaction, I went to see onc and my bp went up to 197/something. He called my pcp before he would even come in and see me, after a half an hour my bp went down to 167 so he came in then. And since last sept I've been trying to get this under control. I'm on my fourth bp med now, I couldn't tolerate the other 3 so we're trying another one. But it makes me so tired, all of them do. Plus my anemia keeps getting worse since I've been on Sprycel. I have been so tired since last September, I really have to keep pushing myself. And I have no appetite,from bp meds.I have been getting short of breath lately, and that has scared me, but the way Trey explained it made me feel better, my rbc is 3.53,-it was 3.42 in jan-/hgb 10.9-it was 11.9 in jan/hct 32.9%-it was 35.7% in jan. My carbon dioxide is 30-it was 25 in jan. So do you think that is why I am getting short of breath? I'm hoping to get my Sprycel lowered, I think that would help a lot. but my wbc was 4.5 in Jan. and 8.0 in April. Do you think that would keep him from lowering my Sprycel? I get bw again the end of the month. I hate cml, after 5 years I wasn't expecting more surprises! Let me know what you think, Love Billie
Trey, could you please give me your opinion? I really tried to keep moving today, but I still kept getting short of breath. I took my advair twice today, and I took half a xanax 3 times today just to see if it was my nerves causing this. I can barely get any food down, and this has been going on for 5 months. When I don't take a bp pill I can eat. But I have to take 2 a day. I know I'm very run down, and I have to do something about it, But it is the breathing problem that scares me. Do you think my breathing problem is because of my numbers,or is it from my nerves? Because my carbon dioxide was 25 in Jan. and 30 in April is that a big difference. If I force myself to keep moving will that improve my breathing? I've been pretty sedentary for a while, but I do move around and do my housework,and try to do other things,so I don't think I'm not trying.But some days I really can't function, just like the rest of us. I'm not asking for a dx from you, just read my numbers and tell me what you think. Is this normal? My father and grandmother(his mother) both died of lung cancer, so that's probably why I'm a bit paronoid. But with all the tests and bw I've had done, I think if I had another problem It would have shown up by now. My last chest x-ray was last fall. I have decided if I have other problems, no more tests,pills,or treatments,or surgerys, I've had enough. I'm tired of feeling sick all the time. Please tell me I'm being dramatic,and just let me know what you think of my numbers and what I can do to improve them, I get bw the end of the month, and I'm hoping to have my Sprycel reduced to 50mg a day. Sincerely Billie
I'm so sorry you are feeling so blue! I wouldn't worry about one rise in WBCs, you could have been fighting off an infection and not even known it. Mine went up and I was sure that was the first indication that my counts were going to start going through the roof since I've been off Sprycel so long, but the next time they were back down to low normal.
My CO2 runs in the high 20s and 34 is high normal in my neck of the woods so that shouldn't be a problem either. Your Hgb is low but not that low at nearly 11. What is your bp on your new medication running? I didn't see that anywhere.
Anytime you are short of breath on Sprycel you need to let your onc know. Keep in mind the majority of people don't have PEs on Sprycel so it could be something else but you should get it checked out. The shortness of breath I experienced on Sprycel was much different than the shortness of breath I experienced before dx. It's hard to describe, but I definitely knew I had it and it was wrong!
Get it checked out, please and sit your GP down and have a discussion about how bad you feel with the expectation he/she is going to do something to work on that!
Hi Pat, & Trey,
Thanks for getting back to me. I feel like a lunatic! I'd say my hormones were flaking, but I doubt I have any left. Do you know how to make a hormone? Don't pay her! That was really tacky but I couldn't resist.
Pat my bp usually runs around 168/98 before I take my bp pill then it goes down to around 150/80 (ball park figure). Trey, I have barets, & my left carotid is 100% blocked,inoperable,thats why I take the plavix,aspirin,& lipitor.I've had that for 6 years, it's scary having that problem & cml, I guess I'm just having a small meltdown. I started my b12 again and I have been doing deep breathing excercises. I felt better today. Sorry I'm being such a pain, I guess I don't want to suffer in silence. Sometimes I just let myself get so stressed out, and it is so wonderful to get reassurence from my virtual family. Love Billie
I didn’t realize you had so many things wrong with you. I guess you do need those med’s to keep going. Bless your heart. It is a delicate balance.
AT least with this board you don’t have to suffer in silence. I think about that ever now and then. Instead of complaining to surrounding family and friends, I just come to my LLS discussion board of family and friends, good place to dump and also celebrate now and then.
Take care, PamSouth
Sorry you are having trouble breathing.
We take one drug then have to take another drug, who know how all these drugs work together.
I certainly am not a doctor but I hope you get your Sprycel reduced.
I really wouldn’t worry about the white cells up. Even if your white cells were low and you were undetectable you still have CML PH+. I really do believe you can live with the disease, just to find the right balance of the right TKI and dose and other counts and quality of life. Even if you had mutations how do you know you won’t have mutation if you are PCRU. Billie it is a vicious cycle, if its not one it another. Med’s can keep us alive but we need to have a balance. I only take the meds that keep alive. I have sever bone pain, but I exercise and ice down, I don’t take the pills for arthritis. I know a lot of people take cholesterol pills, you couldn’t get me to take any regardless of my counts, to many long term side effects. My husband health went down hill after 5 years of taking several different drugs, I thought I was going to have to put him in a nursing home, he was so bad, I was dressing, feeding, bathing him. He got off the meds, went to Physical Therapy and has been working for a little over a year now, he is 71 years. He only takes blood pressure and something if his sugar goes up. I think sometimes we trade one problem for another, with some of these drugs. I believe somewhat along Scuba theories. If he is able to get off Sprycel even for awhile, maybe that will give his body a chance to recover from the side effects of the drugs, he can always go back on the drug, everything is a risk. I think if you find the right dose and keep your CBC counts close to normal. Even if you are not PCRU, I personally don’t care if I am detectible as long as I stay in somewhat of a stable range and minimize the side effects and taking other drugs for low RBC & Platelets, etc, there seems to be no end. So yep I am with scuba to take as low dose as you can. Don’t forget we older folks probably need to be finding a geriatric doctor. That is what I did for mom and we took some of her med’s away and lower doses on others. Seniors have to take child like doses. I don’t know what age you would call a senior but I am 64 & I consider myself a senior.
Also last night, I called 888-371-4942 and ordered Physician natural Only Curcumin Enteric Coated. That is what Scuba is taking. I checked it out on the web and also had a live chat. Strange the gal I was talking to was right down the street from MD Anderson Cancer Houston Tx. I bought some Turmeric, with Curcumin in it, from Meijers store, but It is not the real pure stuff, it has Turmeric filler.
Did you read that post Scuba sent me on his plan. Well I am going to try it, too!! It is a risk, but everything is a risk.
I am going to try it with Gleevec first. I should get my first shipment Curcumin this Monday, meanwhile I am taking the store bought.
You are special to us on this LLS board and other. Even if I don’t always write I read all your post and laugh for awhile. Also I am feeling your pain.
Hang in there, don’t give up, not yet. Lower your dose. Then see if you can breath and see if your other counts improve. It kind of scare me to say that because I am not a doc, so do what you gotta do, to feel better. I mean if you can’t breath, you gotta do something.
Love You PamSouth
Dear Pam S,
Thanks for responding, I know what you mean about all the pills, I am so sick of them. Actually my pcp is gradually trying to wean me off 2 meds right now, I forgot about that it's been 2 months since she decreased my dose, so my body has to adjust to the change. What a dummy I am. She said to call her if I had a problem. But if I've made it for 2 months on smaller doses I'm not going to increase it again, I'll just hang in there. I do have to take my plavix,aspirin,&lipitor because of the blockage in my neck. I even called cleveland clinic vascular dept. at first dx, and they told me the same thing my cardiologist said, and the only thing I could do was take those 3 meds. Then a couple years ago I called them again when I heard about the stents they use to open blocked arterys,but they told me the same thing again, with a completly blocked carotid artery the surgery would almost definitely cause a stroke, & all I can do is stay on the meds. That artery was 99% blocked in 1993, and they were able to operate then,but it blocked up again. It's a hereditary disease. I wonder if I have any good genes?
I'm so glad your husband was able to get off his meds. Good luck with your new med plan. Just be so careful, we aren't as young as michael is. I'm so happy for him, and I hope you told your onc what you are doing,Michael is in touch with his onc all the time. We need you, hopefully I'll get a chance to meet you and you can give me a good massage. Lots of Love Billie
That is true about >with a completly blocked carotid artery the surgery would almost definitely cause a stroke, & all I can do is stay on the meds. <<
The doctor talked my dad into have the surgery about a month before his turned 76 years old, that was in April 1992. Doc told my dad he needed the surgery, so dad thought if he had the surgery he would be fine. I can’t remember the blockage % but I don’t think it was as bad as yours.
The doc said if dad made it 48 hours after surgery he would be fine. Well he came out of surgery and was laughing and joking for a couple of days, just like his usual self. Then on the third day, I got a call at work to go to the hospital dad had a stroke. In fact unbeknown to us dad had been having mini strokes and we just didn’t know, nobody had said anything to us. Well he lived about a week after then. I tried to talk him into going to the big city hospital in Indianapolis but he didn’t want to be far from mom, I don’t know if it would of made any difference. But if I had know what I know now, I would have talked him out of the surgery. Makes me want to cry. He was a strong person, never complained much about his aches and pains like mom did. Sunday is mothers day and mom and dad are gone. When I was diagnosed with CML didn’t seem like any of the family or kids really took it serious and my husband has some memory issues. I just want to crawl up in mom’s lab, she would know what to do. She was such a wonderful person, she could always find a way to make you feel better. I miss her. Sorry got kinda sentimental thinking about Mothers’s day and all.
Love You, PamS
Dear Pam S,
I'm so sorry about your father. Even after his surgery he was still having tia's (mini strokes) . I was having them for 5 months before my blockage was discovered. I was just getting this cloud over my left eye. It would only last a couple minutes, it was just annoying. I went to my optholomologist, and he couldn't find anything wrong. He even put his stethoscope on both arterys. He heard nothing. I later found out that if an artery is as blocked as mine was it can't be picked up with a stethoscope. And because I was so young even a neurologist couldn't pick up on it. Finally my doc ordered an arteriogram, because he had a gut feeling about it. And that's when they found the blockage. So they roto routered me and I was good until six years ago. My Aunt had her first blockage at 34. Her body looks like a roadmap. We are both the youngest patients our vascular surgeons ever had. I gotta have some good genes somewhere! Uggg. At least I have good doctors. My pcp keeps telling me it's a full time job keeping me alive! But she sure has done a great job so far.
Lots o Luv Billie
Pam, I just curl up in my recliner,with my blanket and cover up my head and pretend I'm getting a great big hug from my mom, and my grandmother. It feels great.
Hi Billie: I do not know how I missed this post regarding BP. Let me say that I am sorry your feeling so lousy, and having so many problems. This is the place to come and talk. My BP always goes up when I see the doctor, and Trey is so right about the White Coat Syndrome. I just saw my Primary Doctor on Wed. and sure enough my BP was up. It was 140/90. I have had it higher at times, and the doctor even said she thought it was due to all my stress.
I have been wondering if my kidney functions have been off due to BP meds or what is causing all my problems too.
Maybe its getting you on the right pill also. I have had trouble through the years getting on the right BP pill.
I did good on Lisinopril years ago, and my husband is on Lisinopril now with very good results. They have me on 2 pills Benicar and Toprol, and they just keep telling me that the Benicar protects the kidneys.
You do not know what to believe or think about all of this after awhile. I just hope you start feeling better.
Try to relax. I think you try to do too much, by some of the other posts I have read. Just slow things down for awhile to see how the BP goes along with your other health problems. I should talk. I have myself all stressed out over so many different things right now. I will check back over the weekend to see how everyone is doing.