MDS or CMML?

[Jeff Kel]

My father is in his early 70s. Recently he had a sore throat and went to a doctor, who thought he looked a little pale and ordered some blood tests. Anyway, the blood tests showed his white blood cell levels were over three times higher than normal, and he had moderate anemia. From there they did more blood tests and a bone marrow biopsy.

Today the doctors told us my Dad has some kind of cancer. They still don’t know exactly what, as they need to do further tests on the bone marrow sample, but they threw out CMML and MDS as the two possibilities.
I’ve done enough research to see that these disorders are rare and the outcomes aren’t good. I am a wreck. I don’t know what to do or what questions I should be asking.

My Dad, again, is in his early 70s, he has diabetes and suffered a heart attack a couple of years ago. At the same time, he is a strong farm boy at heart who people constantly think looks 10-20 years younger than his age. Up until a couple months ago he felt fine (Now he feels tired all the time, which I would guess is the anemia), and in fact tended to a full garden on a daily basis this summer, doing everything himself.

With a lot of these cancer prognosis stats, I’m hoping that they’re swung by people in the sample weaker and older than my Dad, but I know I’m probably fooling myself. How much does personal strength have to do with being able to fight this?

[lehaigh]

Please check my post on Aggressive MDS. My wife went from mds 5q deletion to CMML which we were told was a pre-cancer lukemea. Either way the out come was terminal.

[tiara]

I’ll be updating some information on a post about my fiance’s diagnosis as soon as all blood tests come back but this sounds similar to his situation.

Several months ago, he had some irregularities on blood work. He’s on a blood thinner so has it checked regularly. Showed pancytopenia, WBC, RBC and platelets had dropped significantly since the last test. Usually done about every 6 weeks. But for perhaps a month or more, he’d been ‘off’. 71, fit, active–we hike several times a week for an hour or more and are also socially and mentally active. His endurance had been down, and had a number of small bruises. Which on the blood thinner and having been doing yard work and more, wasn’t all that unexpected but was a bit unusual.

But with the pancytopenia, oncology called and wanted a bone marrow biopsy to check for leukemia. Had to wait a week for him to be off the coumadin for several days. When he went in for the biopsy, had a blood draw and that showed all 3 blood tests had increased, a good sign. Biopsy came back indicating not leukemia, again blood test showed all 3 counts increased again. Doc dx’d him with MDS but low risk of becoming leukemia, no need for treatment, watch blood tests and try to live healthy lifestyle which is our normal lifestyle.
Fast forward a couple of months. His endurance was still below normal for him but holding. Mid September we both came down with some viral thing going around. Slight sore throat, slight fever, general malaise, some GI nausea, cramping but no vomiting or diarrhea, and intermittent mental and physical fatigue. From local clinics, reports were not too significant other than annoying and tended to come and go for 2 weeks or so. I got over it but he took a turn for the worse. Fever shot up, sore throat came back much worse, no appetite, and fatigue became much worse. He slept 12 hours plus naps from a Friday through Sunday, had fever mostly at night with heavy sweating. Sore throat even worse. Got in to clinic, tested for mono, strep and PCP asked if had any recent tick bites as tick borne illnesses often have relapsing fevers. Had not noticed any ticks on us or our dogs since perhaps late June.
I did some web checking and found many tick borne illnesses will show drops in platelets, WBC and/or RBC. Along with rashes that resemble his ‘bruises’ but his were lower grade. Other symptoms fit in with his. Fatigue, loss of appetite, muscle aches, moody, at the low grade stage and the rest for the acute stage of Rocky Mountain Spotted Fever and Ehrlichiosis as well as some other TBDs. I also found some information on bone marrow biopsies in TBDs that we will bring in to the next appt with his PCP and hope to get forwarded to oncology. It is possible that he does NOT have MDS but all his symptoms and blood tests, biopsy results are due to a TBD. And had oncology known about such in an area with a lot of ticks, might have spared him a biopsy.
Yes, it is possible that he does have MDS and the TBD made it worse. But why would all his blood tests show a rise in all three categories? Perhaps his immune system is fending off the TBD or multiple TBDs as coinfection is common and not all tests back yet, but strained to the point that a relatively minor viral type illness set him back.
If your father may have had any sort of exposure to ticks and a farm boy at heart sounds like someone who likes to get out in the greenery that can harbor ticks, being checked for TBDs might be wise. Don’t settle for titer tests alone. Be sure symptoms are checked, blood work done and if it walks and quacks like a duck and has web feet, don’t wait for a DNA test to come back proving it is a duck. Most TBDs are treated with doxycycline and should be started ASAP. Many titer tests give false negatives as titer may not have yet gone up enough to register and some people will have an immune system so overworked that there are no extra antibodies left over to register.
I had inconclusive test results a year ago for possible Lyme or STARI, more likely the latter as was a lone star tick that bit me and gave me the rash. CDC and state both claimed unlikely to get sick or need treatment if had flu like symptoms. Up their backsides, 2 months later I had gradually increasing Lyme like symptoms. STARI appears likely to be another spirochete TBD with Lyme like but usually less severe symptoms. But by the time the changeable symptoms hit me so hard I had malaria like spasmodic shivering months after the rash, I was sicker than I have ever been. Starting to get air hunger, heart palps, brain fog, muscle cramping, swings from chills to hot and not menopausal hormonal swings hot flashes, and overall was at stage 2 symptoms if that was Lyme. My PCP started me on doxy immediately, test results inconclusive, positive on 2 bands of Lyme but low level. Possibly indicating had prior non symptomatic infection or more likely from what I have read, that if Lyme was a local strain the tests do not cover or STARI which may be close enough to Lyme strains to show some cross reactivity but not close enough for a clear positive, and STARI doesn’t have a test of its own. At any rate, the doxy was helping within 48 hours. Had several flares as is common with borrelia and stayed on doxy for 6 weeks as at three weeks tried 24 hours without it and have some symptoms return. At 6 weeks when stopped no problem.
The medical professionals with most experience with TBDs are not MDs but DVMs. Veterinarians are FAR more familiar with TBDs than MDs. In our state there are 4700 positive recorded lab tests on dogs with Ehrlichiosis so far this year-one out of every three dogs tested. Vets know that strains vary regionally, have known about TBDs in the US for at least 100 years, Texas tick borne fever in cattle has been known about that long, they know that sometimes 6 weeks or more may be needed and sometimes TBDs appear to go dormant and flare again under stress. And also know that titer testing alone is inadequate. Too many false negatives. A combo of symptoms, blood and other biomarker tests, titer testing and sometimes just treat it like a duck with doxy and see if it gets better. Babesiosis is the only fairly common TBD that doxy is not used for as it is a protozoan parasite. Not at all common in our area.
Please consider this if your father has much chance of exposure to a tick bite. With RMSF, a tick that has fed recently and only needs a snack, may be able to infect someone within 10 minutes, not hours or days of attachment.
The good news is that if treated ASAP, most people recover quickly and fully. And this may be ‘better’ than a dx of bone marrow disorder.
Good luck!

[Sherry Pratt]

Jeff,
Get your dad to a center of expertise on blood cancers. I highly recommend the Cancer Treatment Center of America in Chicago. They are excellent here and will find out what is wrong in a day or two. I know it may not be close to where you live but if you insurance will cover, they will fly you here for an evaluation. The place is awesome.

[Linda Souders]

I just put this under another post.. but want to share with to find people with similar situations that can offer some input. My 85 year old father has Congestive Heart Failure and COPD. A several months ago he went into A Fib not unusal and we went to ER. From the blood work they said his WBC was too high and they couldn’t find infection. I took him to primary his prostrate levels were extremely hight.. We went to hematologist/oncologist he did a bone marrow on him. By the time I took him for bone marrow test he was hardly able to breath and was in bad shape. Few days later doctor called and said he has AML and there is no treatment to call hospice he has between 1-3 months, which is what i was going to do I didnt want to tell him he only had few months to live. Some friends and family said he had a right to know and to take him to the oncologist. I’m glad I did. Doctor told him he knows whats wrong with him and he can help? He told me many of his collegues have been using drug “Dacogen” for older patients with this disorder. Not only was his WBC high, but HGB and plateletts very low. We decided he would start treatment that coming Monday 1 hour a day Mon – Fri… then test blood work one day a week for two more week then 3 week see doctor then following week start treatments again. We were under the impression he would have to do 4 cycles.. First cycle Mon, Tues, Wed, he was fine, by Thursday he HGB was getting low (harder to breath) and he had insomnia. Friday took him for his last treatment for cycle one and I told the nurse he is really bad in breathing etc.. They checked his blood count and his HGB was at 8.2 but because of his age, COPD and Heart Condition they gave him a blood transfusion. In a few days he started feeling better ..Starting Cycle 2 same regimen MON – Fri 1 hour then 3 weeks later repeat.. From Cycle 2 – Cycle 4 was most of the same he would start to feel the insomnia, more shortness of breath etc. but about a week after cycle finished he was better each time. The biggest problem was his insomnia. Doctor prescribed him low dose of ambien caused him to become psychotic and delusional, but he snapped out of it after about 15 hours. Next we tried low dose of ativan same thing he got psychotic and delusional. Finally by 5 cycle I said I am not trying any more prescribed drugs. (he also takes about 9 different pills for CHF and 2 Nebulizers and Spiriva for COPD) My dad lives with me and thank God for my daughter (28)she has been living with not working and has been great taking care of him because I can’t afford to lose my job. My father is a great man, but very stubborn and makes it very difficult for my daughter and I to help him. He really can not be left alone. He gave us a hard time for weeks about using a walker, he tries to take oxygen off and see how long he can go without it, etc.. He’s strong willed and I know he wants to gets better so he can go out again and not need constant oxygen etc. Anyway getting back to his cycle of treatments he was very disappointed when doc told him about cycle 5 and 6. He thought it would be 4 cycles and that’s it. Anyway we get to cycle 5 again he feels pretty awful by end of week and few days into following week, but this time he didn’t seem to be bouncing back like before. We went to see Doc the following week instead of just blood work since he didn’t seem to be getting much better. His HGB was at 9.2 and doctor said I think he should continue to finish cycle 6 and then they would check bone marrow. Original bone marrow showed 20% blasts. A few days ago he told me he had a pain in his chest, but he always refuses to go to hospital and ER. Yesterday I took him to doc again. I figured if he is still feeling this bad maybe starting cycle 6 on Monday may not be a good idea because we know that usually he starts out feeling good and then by end of week not so well. Yesterday doc mentioned something about CMML. I try to do a lot of research of my own on line besides what doctors say! I asked him, CMML, I thought he had AML. He replied that it’s CMML but it appears or works the same way as AML?? My father has become impossible.. He is constantly complaining won’t cooperate etc.. So after all this ( glad to vent) he will be starting his 6 cycle on Monday.. Yesterday his HGB was 10.1 but something is off..he is pale, still short of breath. Usually when his HGB gets to a 10 or above he was doing great, didn’t even use oxygen all the time. After next weeks cycle he will get a bone marrow test on Dec 2. Doctor said if it is helping and blasts are down they will try to continue treatments but will longer rest periods, maybe do a cycle once every 6 or 7 weeks, but he said if blasts are higher or not improved then to stop all treatment. I was thinking that since the HGB- 10.1 WBC(7.4) and Plateletts (80) I know none of this is normmal but better than it was that the treatments must be helping and that when they do bone marrow should come out with less blasts, but since none of the numbers are normal range maybe not. Is it possible that even though blood counts have improved the blasts may have increased. He has been getting different bone and joint pains. Another dilemma, because both the Dacogen can cause bone and joint pain from side effects but so can CMML and AML.. With all this rambling does anyone have any similar situation????

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