21 replies to this topic

[Snowwhite]

I was dx in Nov. 2016, my FISH test showed 72% and my BMB showed 93% of cells. I went to MD Anderson in Jan. 2017 for a second opinion which was confirmed. (No bone marrow performed) PCR showed 2.68. I just received results fro my 2nd BMB and FISH. It says the result is negative and the BMB says "no morphologic evidence of CML. I think i understand this part but in addition it says that I have "mild reticulocytosis" i can give numbers if needed to help me understand. But it states that " blasts comprise 2% " Lymphocytes are not increased. In the next paragragh it says there is no increase in blasts. In my first BMB it said there was no blasts so I am confused. It states that I have had an almost 1 log reduction since January. How does this blasts information tie in? Unfortunately my Dr. Indicated that this was a good result with the only concern mention was a minor elevation in creatinine level of 1.16 . Which has actually been at that level since the beginning. I feel like I am comparing apples to orages. I have had FISH test and PCR test. But this time they only did FISH and not PCR. Help! The blast infor scares me.

[scuba]

Having some blast cells present are a normal part of blood especially in your case when FISH is negative for CML. Blast cell percentage less than 5% is normal. Blast cell percentage between 5 and 10%, however, is a concern for advancing disease. This does not apply to you.

 

In your case, you have been treating CML for less than six months. This means your body's blood system is going through a rapid turnover. CML cells are dying and your normal blood is trying to fill the gap. This is most likely the reason you have mild reticulocytosis - you have many immature red blood cells going through the maturation process. Blast cell percentages greater than zero usually indicates a more rapid turnover of blood. This is normal in the transition from CML disease to normal. Blast cells may or may not be present at diagnosis - but usually go up early in treatment and then fall back down. Blast cells mature very quickly - they do not stick around for long if maturation is normal. In advancing leukemia, blast cells are generated faster and fail to mature which leads to a rising count.

 

Based on what you wrote above, you are doing fine. Once FISH goes to zero, then PCR will be how you are monitored. Your PCR is at 2.7%. That is very good given your time line. Your next test will likely show an even lower level. Trend is what is important. Trend down until you are below 0.1% and then it doesn't much matter. 

 

What TKI drug do you take and how much?

[Snowwhite]

Thank tou scuba. That is very helpful. I am on Gleevec 400 miligrams since Nov., 2016. I have a few side effects, muscle cramps (though they have leveled out quiet a bit), shortness of breath, fatigue (usually take a rest in the afternoon), some intestinal disturbance ( but I have a propencity for this anyway) i try to work out 3 ir 4 times per week. I swim for an hour and a half with not much trouble. However, I get winded walking up a slight incline! Anyway thanks again for your response, I feel much better about todays results.

[Red Cross Kirk]

Although it doesn't seem as common with Gleevec as with Sprycel, pleural effusion is a possible side effect.  It might not hurt to get checked for it since you're easily winded.

[Snowwhite]

I never even thought of that, but it does make sense. Would you just see a pulmonary Dr.? I will read more about pleural effusion too. Thanks for the heads up. I love this website. I'll update when I have news

[chriskuo]

Your CML doc or internal medical doc would likely order an x-ray before referring you to a pulmonologist.

[scuba]

You getting winded is most likely due to mild anemia and fatigue. What are your RBC numbers (including hematocrit and hemoglobin). Recall you had slight reticulocytosis (immature red blood cells). Slight anemia is very common during early stage CML treatment. Regular exercise can certainly help. You do not have pleural effusion. You would be in pain and the symptoms don't go away when exercise stops. And pleural effusion is much more rare in comparison to patients treated with Sprycel.

 

Getting the response you are getting on Gleevec 400mg is excellent. You are doing fine. Monitor your other blood counts (metabolic and liver panel as well) so that you can track normalization of your blood. You are still in the transition window from a leukemic blood system back to a normal one. It takes time - up to two years for some before trends flatten out and your "new normal" establishes. Most of the normalizing is in the first 12 months. You have six months to go. 

 

To learn more about CML from a patients perspective  - read Trey's blog on CML:

 

http://treyscml.blogspot.com/

 

 

It is a good summary with lots of good links  (albeit somewhat outdated - note to Trey, do you have an updated version located elsewhere especially regarding dose reduction and the emerging consensus on cessation attempts). Trey can provide you links to other useful information as well such as:

 

http://www.cancernet...t's-perspective

Edited by scuba, 18 April 2017 - 09:17 AM.

[Snowwhite]

Scuba I have:
Unlike most others, that I have read about, I had an elevated RBC, Hematocrit, and Hemoglobin at diagnosis. It is actually what made my PCPvsend me to a hematologist. Then WBC started to rise within a few weeks but not drastically. It never went higher than 17. WBC came within range in the first month. RBC stayed a little high for awhile but has come down to normal range now, but MCV and MCH have gone up.

WBC is 5.4
RBC is 4.12
Hgb is 14.4
Hct is 41.9
MCHC is 24.4

MCV is (h) at 101.7
MCh is (h) at 35
Creatinine is (h) at 1.16
Chloride is (h) at 108
GFR is (l) at 48. I am not sure what this is.

All of my other numbers are within normal range. What you say does make sense to me. I have always been a very active person. Hiking is something we do regularly. I live in Colorado, so high altitude could play a role but never has been an issue in the past. I golf regularly. I did 18 holes on Saturday with a cart. I never used to use a cart, but could not have done it without now. I work out 4 times per week. I have taken up swimming, usually 1 1/2 hours at a time but only on my back because I get cramps when swimming on my stomach. No issues with being winded while swimming, but with other more intense cardio I do, with weakness in my limbs. For example tread mill. I did mention it to my oncologist and he didn't seem concerned at all. I am starting to walk more now that the weather is getting nicer. I am 59 and have gotten out of shape which I know doesn't help, but just not able to cross that hump like I used too. I understand what you are saying and will have to become more patient with the process, but want to make sure I am doing what I can to help it along as well.

[scuba]

RBC is 4.12
Hgb is 14.4
Hct is 41.9

 

The numbers above are low normal to slighlty anemic. Explains much regarding being winded when exercising, but fine when not exercising.

 

Normal range for RBC is 4.5 - 6.0. Varies somewhat from lab to lab. 

 

Also - when MCH and MCV are elevated your existing red blood cells are trying to adjust to the anemic condition by swelling to accommodate more hemoglobin and hematocrit (HGB and HCT). This is a typical response as RBC's are getting replaced and added. Over time these numbers should normalize. In comparison - my RBC level is typically between 3.5 - 4.0 after 7 years living with CML. Nothing I have done changes this rock solid "new normal" for me. My HCT and HGB, however, are normal (I also have elevated MCV, MCH) and I can exercise aerobically, but won't win any marathons. Sprinting is tough to do unlike prior to CML. In my case, low RBC's are likely due to the myelosuppressive effect of Sprycel (despite low dose). When I stopped Sprycel for 9 months to see if I can go without the medication, my RBC's did climb a bit into the normal range. They fell right back to where it is now after I re-started therapy. You'll learn how your body responds as time goes on. 

 

GFR is glomerular filtration rate. It is an indicator of kidney function. A low number usually goes hand in hand with a high creatinine level. You need to drink plenty of water. Low glomerular filtration rate is an indicator of dehydration and/or eating too much protein. Eat more veggies and drink more water. Your urine color should be almost colorless. I drink two glasses of water right when I get up in the morning - and that's before coffee. At 59 you shouldn't be having kidney disease (which is another cause of low GFR). Usually it is a sign of not drinking enough water.

[Gail's]

Snowwhite, I assume you're female. Your hematocrit and hemoglobin a high normal for a woman no longer having periods. I would ask the oncologist or your primary doc to order a vitamin d level and iron studies, particularly your ferritin level. Those all play a part in fatigue. Unfortunately I found that the shortness of breath just comes and goes despite having normal X-rays. These drugs can do a number on lots of different parts of our bodies. This is a really hard time for figuring out CML and it's hard to be patient, but your body will adjust in time. Like Scuba said, you're just getting started. This is definitely not an easy path, but this group really helps. Welcome.

[kat73]

Couple of quibbles here, Scuba.  One, it's rare to have pain with our pleural effusions; mostly the problem is being symptom-less and the pleural effusion has time to get worse.  I have found, for instance, that the telltale symptom for me is a nighttime dry cough (I guess because the fluid moves from the bottom up to the bronchial tubes and tickles, while lying down?)  The other telltale sign for me is tightness in the midriff area.  But no pain.  If Snowhite gets winded, it's worth checking out with a chest x-ray.  Although it's unlikely to be a pleural effusion so soon, and on Gleevec.  But maybe.

 

The other quibble is on the GFR.  There is evidence that Gleevec can "injure" the kidneys.  This is what happened to me in the early months of taking it.  The onc finally noticed a trend in high creatinine (1.5) on my labs, sent me to a nephrologist, and I had a workup.  This would  be a good idea for Snowwhite.  It turned out there was no real damage, but that Gleevec continued to hit and affect the kidneys, enough for me to have a permanent (stable) creatinine of 1.1, a GFR of 50, secondary hyperparathyroidism requiring me to take calcitriol and vitamin D3, and be labelled forever as CKD, which is depressing.  I'm "fine" in that nothing is progressing, but a switch to Sprycel didn't make it go away, either.  Nobody back in 2009 really focused on this problem - there was only one case study, I think - but it is definitely in the literature now.  Snowwhite's onc should take the high creatinine seriously if it becomes a trend.

[scuba]

Hi Kat - absolutely on the CKD possibility. Good quibble. I should have mentioned that Gleevec can affect Kidney function. But it could also be dehydration. Only Snowwhite knows if she drinks enough water in order to rule that out. 

[Trey]

SW,

Often blood counts and other issues get out of whack after starting the drug, and also due to the body trying return to a normal state of making good blood cells.  It just takes time for these issues to sort out.  I would not be concerned about any of the issues you mentioned.  The most important issue is that you are responding well as shown by the negative BMB and FISH. 

 

The BMB and other reports have boilerplate verbiage on the report that does not even apply to the patient.  So be careful not to apply that information to yourself. 

 

I also could not walk up inclines without being winded after starting Gleevec, but this resolved itself after about 6 months.  Just give it all some time and see what issues remain to be watched.  Otherwise it is normal to have non-normal blood counts and other issues for quite a while. 

[Snowwhite]

Thanks once again for the information. In response to some of the points that were brought up. I have chronic dry mouth so I drink all the time. But not always water. I drink water with all meals and usually 2 or 3 class fulls. But in between meals I drink soda, G2, and ice tea. I discussed this with my brother (a nurse) and he made a good point, which was that when drinking throughout the day I am sipping a drink rather than just drinking it down, so maybe I am not as much as I think I am. I will become more aware and drink more water and see if that helps at all. Next point: i have been tested and found to have a vitamin D Deficiency. My PCP stated that almost everyone in our region is vitamin D deficient (Colorado). Anyway I take a vitamin D3 supplement daily 5000 iu's. I don't know about the ferritin and iron work up. I don't believe I have had that so I will ask about getting that done. Next point: I have a costant raspy voice with phlegm on my voice box pretty much always. It has been attributed to reflux and/or allergies. I take over the counter antacids rather that the Nexium I used to take. I am a 59 year old female living in Colorado Springs, CO. Looks like I have a few things to work out and think about. All advice and information is greatly appreciated. I feel that I have a place to go and get clarification, although I would like my oncologist to step up as well. I am very thankful for the gift of responding well to the Gleevec. I don't want to sound ungreatful on my quest to have a full understanding of this disease that all of us have been given. I know you all understand and thank you for that.

[scuba]

SW - A key indicator if you are dehydrated is urine color - especially first thing in the morning. As long as it is practically colorless, you are fine hydration wise. A deep yellow color is a sign of dehydration which can affect GFR results. At GFR=48, that is very low and as pointed out above should be looked at.

 

I have found that oncologists are not good general medical practitioners. You do need a primary care physician who can advise you on your overall health. The only positive about getting CML is that it does help you focus on your health in ways not having the disease never would. All of the testing we go through often times exposes other health warning signs. 

[Snowwhite]

My urine is not complerely clear but a light yellow. But still feel I need to step it up and will do that starting today. I am going to also find a PCP as well. I see the nurse practioner in my Dr. office about 99% of the time. She is nice but I seem to always be the one directing and I am afraid about what I don't know. My son is a surgeon in another state, and I spring a lot off of him but as he says its not his speciality either. So ultimately we need to be on top of our medical issues and know about our own bodies. That is why this forum is so helpful.

[kat73]

Snowwhite - Probably the best piece of advice you've been given is when Scuba said to get a good PCP.  I think it's rare when an oncologist really gets outside his subject area to help us with "the other stuff".

 

Please bring up the kidney function question with the PCP.  I'm sorry if I'm being annoying, but your story is so much like mine, and I just don't want you to have to deal with CKD, if you can help it.  A GFR of 48 means your kidneys are functioning as filters of toxins at just 48% of ideal (100%).  Normal GFR is 90 or above.  What is your BUN?  What is your calcium level?  Your low vitamin D level could very well be tied in to secondary hyperparathyroidism, again part of the kidney dysfunction picture.  You need to get a PTH (parathyroid hormone) test, which is a blood test.  This all sounds like a bunch of unrelated stuff, but it is actually a feedback loop - all affect all. 

 

Another thought - please don't shoot me - the Nexium - you do know you need acid in the stomach to utilize the most out of your Gleevec?  So you need to separate the times you take each med by a few hours?  A very possible scenario might be that you will be able to reduce your Gleevec dose, if it's being absorbed better.  You seem to be responding so well, PCRU may be in your future, and so maybe dose reduction as well.

 

I'm not trying to scare you about the kidney and secondary hyperthyroidism thing.  It's not that big a deal if you remain stable.  You're already taking the vitamin D and I found adding in calcitriol was absolutely side effect-free.  I go to see a non-fancy nephrologist only twice a year, and everything is always the same - safe and secure.  BUT I'm stuck with a BUN of 26 and creatinine of 1.1 and a GFR of 50 and these things never change, and can't get any better, for love or money.  I'm fine, but I'd love to go back in time and never have taken that first Gleevec pill.  Of course, there's no guarantee it wouldn't have happened with Sprycel - who knows?  All I know is all my kidney-related numbers were normal all my entire life, right up to Gleevec.

 

I will rejoice if none of the above turns out to apply to you.  Just ask, please!

[Snowwhite]

Kat thank you so much. Heck I am not going to kill you. I am so greatful to get this important information. Until this website, I felt like I had no way of knowing the good from the bad. I can deal with whatever comes my way, I just want to know so I can make informed decisions. Now I sure hope nothing else goes wrong, but I still want to know. I am actually out of the house right now, so I will check those numbers and get back to you with them a little later.

[Snowwhite]

Kat I have some numbers for you:
BUN 11
Sodium 143
Potasium 3.9
Calcium 8.5
Albumin 3.5
Globulin 3.1
A/G ratio 1.13
Bilirubin total 0.4
Alkaline Phosphatase 57
AST/SGOT 15
ALT/SGPT 25
Hopefully that covers liver and kidney questions.

[Snowwhite]

Also Kat I had read about some bad effects if Nexium even before CML, MD Anderson advised to take it 12 hours apart. I chose to stop it entirely. I just do alka seltzer antacid when needed. I take my Gleevec around noon and if I take antacid it is generally at bedtime