Saw my ONC today, a follow up since, my remission 2/12, to APL. My blood counts were normal, no indication anything is wrong. The one thing I have a concern about was, recently I noticed, I'm having severe shortness of breath doing any physical exertion. My wife said I was just out of shape but my doctor said no I would be more concerned that you may have a blood clott in my lungs. I have a history of DVT from the APL last year. I have a filter in the main vein in the stomach area and taking a low dose blood thinner, Lovenox. He order a Echo , a CT scan, and a PFT test (Stress test ?)
My LEF was 50% from a previous echo test, 2/12. The doc labeled it "Grade 2 diastolic dysfunction". He also said 50% was fine.
From what I've read 65% is fine, but I'm 65 so perhaps he's looking at that. ?? Will see my onc again in a few weeks after the tests.
I remember not having shortness of breath before the Leukemia and I live on a farm, fixing fences, stalls, mowing 10 acres of grass every week or so, etc so I was pretty healthy.
Was wondering if anyone else has had shortness of breath as a result of having chemo? Or has had heart damage from taking chemo.
I certainly had shortness of breath in the first few months after my allo SCT (to treat mantle cell lymphoma) but that gradually diminished as I became more active. Not sure what LEF stands for but PFT is Pulmonary Function Test, where basically they test your lung capacity (be prepared for some deep in and out breathing exercises - not enjoyable but not painful either). I had a baseline test before my SCT.
There can be lung or heart damage post chemo but hopefully that will not be your case.
So good luck with the tests and keep us posted.
I had my shortness of breath prior to my dx. Mine was all HGB (I was down to 5.5- 6.0 by that time).
However, I think we all get some coronary damage from chemo and it would be the exception that didn't have any I think my injection rate went from 65% to around 55%. But the good news is that it can improve over time.
The PFT stands for Pulmonary Function Test which is sitting in a little plexiglass box and breathing into a tube until you nearly pass out (I actually did pass out briefly once...don't do this with a clogged sinus). They want to check how well your lungs are working. The nice thing is that, though it's a pain in the butt, it doesn't take a really long time.
I didn't know they could insert filters onto veins. That sounds like its pretty cool.
You actually sound to be in acceptable shape for where you are right now. The clot wouldn't be good but, perhaps, it's not there? This is all a "I think that might be the issue," right?
It's not all great but you've been sick. It takes awhile to recover. Do keep asking questions and keeping an eye on things. If something's not right, you want to be on top of it before it gets there.
I didn't know that the ejection fraction rate could improve, that's encouraging. How does it improve? By medicine and or exercise?
I was working on our fence this morning with the help of a good friend and I had to stop every 10 mins, to catch my breath. I think I'm not going to push myself any harder in-spite of my wife's nagging. I just can't do what I use to do and I don't know if I could actually make things worst, such as aggravate or cause a Pulmonary Embolism or heart problem. It's really hard to adjust to normal life when your body is lagging behind.
I'm amassed at the medical technology we have now. I think they put a "Green Field Filter" just above where the two main veins from each leg joints. I think the docs told me there were 2 kinds, one that can come out and one that can't. I could be wrong on these points, but that's what I seem to remember (my memory has also suffered) The insertion procedure was really not that bad. I think I had something like Valium and Novocaine and they made a small incision in my left groin area and pushed the tiny filter up into the vein. Now my ONC wants it out (Apparently mine is removable), he said I should .be past the stage where APL causes clotting. I asked him ARE YOU SURE it can come out now and he said yes. I think at the same time, they'll take out my port also. I don't need it anymore.
I'm scheduled to have the 3 tests don't at the same location next Wednesday, so I should know more then.
There are many reasons, like others have stated, why a person can be short of breath post transplant, anemia, cardiac, pulmonary, infection etc. Glad to see they are taking things seriously and looking for answers.
My adult son had a double u cord transplant for relapsed aml. He was treated with the anthracycline chemotherapy, daunarubicin both on diagnosis and again on relapse. He also had total body irradiation which may or may not cause cardiac damage, but about a year post transplant his EF dropped from 70% pre-aml to 47%. He was diagnosed with anthracycline induced cardiotoxicity at the age of 21. He sees a cardiologist regularly and is on cardiac medication. I have known others that have not gone through transplant have cardiac related issues from the chemotherapy as well.
The anthracycline has an effect on the heart muscle causing thinning of the wall as well as an enlarged heart. I have not read where it has any effect on the coronary arteries however there are reports suggesting that post transplant folks can suffer from hyperlipidemia and i have requested they test my sons lipid panels, the results are concerning. Hyperlipidemia can lead to coronary artery disease.
So to answer your question, yes heart damage can occur, it is important to have routine echocardiograms post transplant. Also be aware that a muga scan can give a more accurate ejection fraction than an echocardiogram however there are certain things cardiologists see with echoes that make it a valuable tool.
It is good that they seem to be looking at everything. Chemotherapy/radiation/gvhd can all have an effect on the pulmonary system as well. A PFT should be able to tell you if there is any restrictive or obstructive disorder going on.
Generally they do VQ scans to rule out pulmonary emboli but i suppose with having a filter there is no need for that??? By the way does your cardiologist have you on baby aspirin or any blood thinners??
Wishing you the best and hope you get to the bottom of this soon.
You actual cleared up one thing, that the MUGA and Echo tests could give an ejection fraction rate. I had a MUGA test before I started my last round of Idarubicine. The next time I see my ONC I'll compare the MUGA and Echo EF rates. I don't actually have a cardiologist yet. My ONC wants me to see one and sent a letter to my VA doc explaining all that has gone with me and suggested I see a VA cardiologist.
I am taking a blood thinner "Lovenox" for blood clots. I don't know how effective it is for heart problems. I was told not to take aspirin for now, because of the Lovenox.
The ONC will take me off Lovenox 30 days after the filter is removed.
I appreciate all comments, because I have not researched this post chemo problem that much, but I've got a feeling I will very soon.
Hope your son is doing well
Thanks for responding
I think just exercise and time can help improve the heart function, not just keep it from getting worse. But there is damage to organs and cells...it's something to talk with someone much more educated than I about.
Has your doctor cleared you for work like fixing a fence?! That seems like an awful lot of potential risk for someone who's still battling aspects of the disease. Please seek a doc's release to do things like that, if you haven't already done so.
Memory problems are kind of common for those of us who've been through chemo. It's a phenomenon called "chemo brain" (creative, huh?) and it just screws around with our cognitive abilities for awhile. There's usually some improvement so just try to deal with it until you stabilize, if you think you might be facing that. There are ways to improve things with brain building exercises and stuff.
My husband has diffused Large cell lymphoma NHL . He had r-chop but has had a reaction to rituxin or cytoxin doctors think. He has lung damage , oxygen 24-7 30percent pft. Now the lymphoma is back and he is limited in treatment. We are looking for oncologist who has treated someone like my husband. Can anyone help?thanks!
I'd check with some of the major blood cancer hospitals. Fred Hutchinson in Seattle, MD Anderson in Houston, Memorial Sloan-Kettering in, well hell, I can't remember where it is. It's on the Seaboard or thereabouts. Oh, yeah, Moffitt in Florida.
There are a lot of great blood cancer hospitals and many come to mind. These are four of the top places and spread fairly geographically. I'd check into them and see if they can help or refer you.
I hope you're able to kick the hell out of this.
Update. The scheduled 3 tests did not happen. The VA got involved and wouldn't authorize my ONC's orders. Long story short, I originally went to the VA when I was diagnosed with APL and was transferred to another hospital in Cincinnati that was better equipped to treat this. Actually they contracted with this hospital to do my treatments including the ONC's outpatient clinic. Why the VA now got involved again is anyone’s guess. Now I have to rely on the VA PC doc to update my ONC (shouldn't it be the other way around) And, now the 3 tests are scheduled at the VA over a 2 month period. Sure hope I don't have something serious wrong, because the shortness of breath is still a big problem and I've resolved that it's probably caused by chemo damage.
I'm really not happy with the VA right now. It's always a challenge to get things done with them. For instance, I got a call from my PC doc's assistant to tell me about a CT scan scheduled last Friday 6/29, I asked him if I had to fast for the test and he said no. So guess what, I drive 30+ miles to be there at 8am and the operator asks me if I had eaten anything and I said yes. She said I couldn't have the test because I might throw up during the procedure. Another incident occurred recently when I saw their Ortho Doc about having elective surgery for a torn rotor cup; Guess what, they won't do it because I had chemo. Even after I told them my last IV chemo was at the end of January. Didn't matter, I might get a chemo related infection. I even had my ONC write a letter, didn't help. I'm going to look into having Medicare cover it.
I have enough problems to deal with, I'm frustrated and I'm just venting a bit. The VA does do an exceptional job taking care of so many vets, I'm really fortunate to have them available, but they aggravate the cr.. out of me sometimes.
that is very interesting about your shortness of breath because I have had it ever since finishing chemo for NHL. I get out of breath, hurrying around getting ready in the morning, putting on socks and shoes. I can do stuff but I make a point of doing it very slowly. I had the breathing test, an echocardiogram, etc., all ok. I have a c-pap machine for sleep apnea but it doesn't make it so that i'm not fatigued durng the day and short of breath-- I don't know the relation to my cancer and the chemo--my muga scan pre-chemo showed i was ok and my cardiologist said all the chemo had not hurt my heart but the fatigue and shortness of breath are still there. One think I learned you may want to ask about. My bloodwork shows that my hematocrit and hemoglobin are at the top of the normal range-- and what this means is that I'm not getting enough oxygen so my bone marrow is making more blood when i sleep-- its worth looking at. Hope we both get some answers and relief!
So, your breathing test (PFT) and echo were ok. Does your doc have any ideas why your not getting enough o2?
Are you going to have anymore tests? Usually you have to have a Echo or Muga test before and after chemo to compare the results.
Do you know if you had one after your chemo?
Your symptoms sounds like mine. I find it especially so when I lean over. (like picking something up off the ground) .
My MCH (mean cell hemoglobin) on 6/20 was high, 35 out of a range of 27-31
My HGB was OK, 14 out of 11-18
My HCT (Hematocrit) was ok 41.7 out of 35-60
And I'm not sure what all this means, perhaps my doc saw something and ordered the tests. ??
As a lay person, I understand it when your body can’t get enough o2, you breath harder. So it could be your heart not pumping out enough blood or your lungs are not producing enough o2. To me it makes sense that the chemo did something.
I'm supposed to see my ONC this month to talk about the tests (which all won't be done, and he'll be lucky if he gets the reports, I'm being sarcastic) and I’ll mention the hematocrit and hemoglobin thing.
I’m supposed to see a VA cardiologist sometime, they haven’t notified me when.
Thanks for your reply Zazoo
Dude, you need to get an attorney on this or at least contact the VA appeals people, or whatever they have. There is no reason those tests need to be put off. Except with the echo, I don't know that you're sitting on a ticking bomb but there's a principle involved. And I can't imagine what on earth the contrast would do to make you vomit. I've had a lot of CTs and I can't remember ever having to fast (though my memory is shaky). The refusal to do surgery is absolutely asinine.
This just isn't right. Get someone to help you if you're not feeling strong but someone needs to hit the VA head on.
Do you have private insurance or are you reliant on the VA. They can't dictate your care options.
Those results you mentioned are just routine CBC numbers. I've never heard of anyone giving a damn about the MCH. A lot of those number must be on there for a reason but the HGB/HCT, PLT and WBC/NEUT (ANC) are usually all anyone has looked at. I
'm pretty sure your doc's just putting hooks on all sides of the lake to just try to find out what's wrong with you. You know, do the standard tests and see if they show anything or at least indicate less common tests. The doc's just trying to get a read on why you're short of breath. One thing I'm pretty sure of is that your HGB does not indicate you're lacking oxygen.
One question, Bob, is there any chance these are panic attacks? When I told my PCP about my breathing issues he said that's what was going on. Thankfully, my endo checked my HGB (5.5) and got me admitted. Since my doc thought that was what was going on with me, I'm guessing the symptoms are similar.
I do have Medicare, but i'd have to pay the 20%. I can't pay my bills now, so the VA is the best choice in my case. I got an email from my PC and he said he would try again to get the Orthos to do the shoulder surgery, but felt they wouldn't. He said he was going to call my ONC and talk about the port and filter being removed. So, I sent an email back and reinterated my symptoms and that the tests were 2 month apart.
I'm pretty sure it was a ct scan they were talking about, because I actually went to the CT room and spoke to the operator. If I can remember, she said the drug goes so fast through my heart (during the procedure) that it could cause vomiting. Don't understand this . Perhaps it's a dye for the lungs or heart?
I agree this is not right on so many aspects,
1 My ONC should be calling the shots
2, the 3 tests should be done all at once. (If I went into the er, they would do the tests immediately)
3, the VA should stay out of the decision process. (Not sure, perhaps they are, and just providing the resources)
4. Its ok to take my port and filter out but it's not ok to do arthroscopic surgery of my shoulder (for fear of
Chemo infection, that doesn’t exist) Still don't get this one.
If I drop dead of a heart attack in the next week or so the VA will have a lot of explaining to do.
I did have some panic attacks in the hospital when they told me I could die the first week of treatment (Thats pretty common in APL patients, if they can get through the first week and don't get DIC which I did), they usually make it.
Had another one when I was on Morphine or Dilaudid for a week.
Had another one in March for no reason.
I take Lorazeparm when needed.
I don't think the breathing problem is caused by painic attacks, because I have the breathing problems when I don't have an attack, like when I'm walking or doing any light yard work (and some hard work on that darn fence).
Wonder if there is something like PTSD with cancer patients.
agree completely about the shortness of breath, etc. with just little things. I do stuff but I do it reallly slowly so that I CAN do it-- like rolling or unrolling the garden hose, sweeping leaves, pretty much everything---- I think we all need a visit with a pulmonologist if that is possible. My pulmonologist did NOT think high hemoglobin,hematocrit was from sleep apnea. Nice. Two other doctors did think that. Don't think we can take too much we hear to the bank because it seems like what we hear will be contradicted or not supported by another expert. That just means we have to keep looking, figure out what works for us. Everyone I know with follucular lymphoma, in remission, is tired, tired. There is such a thing as post-cancer fatigue. Think there is something to PTSD, too.
PTSD is certainly a possibility with cancer patients. But PTSD is so tricky, I hate to use the word. That's something that needs a definite diagnosis from someone trained in recognizing trauma. We're all a little traumatized when we get the news we have cancer, but is it deep enough to cause a disorder? That's the tough call. In some ways it looks like depression, which means depression looks like it, as well. Just really tricky waters.
If you think it's a possibility, have it checked out. However, if you're not regularly feeling panicky, having flashbacks, being hypervigilant or performing acts of self-destructive behavior, you can probably relax until you see a shrink.
I don't understand the willingness to do the one surgery and the reluctance to do the other. Are these decisions all coming from the same doc? There's no reason to expect that different docs will make decisions that have logical resonance but, heck, the same doc should be counted on for some kind of reasoning continuity.
I'm glad the VA has been good to you in the past. Still, stay on their butts and make them remain good to you.
Just a thought, how about taking the Ativan on a regular basis and see if that helps level you out. I used to take it daily and never really noticed it.
Hang in there.
Tex & Andrew,
I Take Lorazeparm occasionally, which is the generic of Ativan. It does help, if I feel something coming on. They gave me that in the hospital when they found a large blood clot in my leg; I kind of freaked out, just one more complication after another. Now, I try to convince myself whatever will be will be, and I can only do so much (like preventing a relapse, which I think no one really knows how to do), but it doesn't always work. I'll start taking it daily for a while. You know we go through so much crap it's a challenge to figure out the root of anything.
My PC & ONC docs are all for elective surgery, it’s just the VA's Ortho doc doesn't want to take the responsibility. I broke 11 bones and injured my shoulder in a motorcycle accident 7 weeks before I came down with APL, so fortunately I had a Progressive Med coverage of $5k. If I can find an Ortho doc to do the surgery and have Medicare pay 80%, perhaps the 5K will cover the 20%. I just hate having to go doc hunting and get estimates. Boy that sounds funny.
PS, I'm coming up on 1 year on 7/23
Thanks for you advise
If anybody knew how to avoid relapse, no one would relapse. You're right, the whole thing's a crap shoot but more people continue to shoot sevens these days.
I don't know how bad the Ativan (easier to spell than "lorazepam") effects you but it never messed me up at all. If you're like me, would it hurt to take it daily until you feel the ground's a little firmer under your feet?
Been taking the Ativan 3x a day for a couple days, feel a little mellower.
Had the CT scan this morning at the VA. They waited until a doctor was available, I guess just to watch ??. They injected a contrast agent and when it was done I could feel my whole body quickly get very warm and I didn't throw up. Asked if my ONC would get the results, she said they send the results to the other hospital's computer where my ONC can get them. Let’s wait and see.
My wife and I have decided to put our farm up for sell. She's 58 and I'm 65 taking care of 27+ horses and it's just too much for us to handle anymore. We've had this 42 acre Equestrian Farm since 1992, we board other people's horses and put on equestrian shows though out the year. Now, I don't have the energy and stamina anymore; horses (I love them) most all they know how to do is eat, poop, and break things for me to fix. She has already had both wrists broken from being run over by horses and I’ve had a tractor with bush hog run over me (going backwards the blades missed me); crashed an airplane ( broke my back and neck) ; crashed a motorcycle (broke 11 bones) (last two not related to the farm). So, it would be nice to settle down on a quite lake, build a sail boat and drive a rocking chair. She could take her 3 foot palomino mini and Flaxen Manned Chestnut (blonde) "Haflinger" pony. She drives him (with a carriage) in parades. The mini also has a mini carriage and was taught to drive.
Best to everyone
Sounds like a busy life. I understand you love it but 65 is getting a little long in the tooth to be dealing with that much anyway, AML or no. It is nice to finally "meet" someone as accident prone as I am, though you seem to do it in a bit grander style than I do.
I'm glad you got the CT. I forgot to mention about the contrast...I guess it could make someone a bit nauseous but I can't imagine anyone actually vomiting. I guess it happens. Anyway, you got it and got through it and that's what matters.
Have a good Saturday, Bob.