Unusual Abnormal RBC Morphology = Another BMB?

[Malissa Kirszenbaum]

I hope this post finds everyone smiling and happy today. It is not unusual for abnormal morphology indications to appear on Leon’s CBCs. This morning was a bit different. The report this morning showed 8 different abnormal RBCs in addition to Metamyelocytes Pct and Myelocytes (first time). His ANC is 1.1 Hemoglobin 10.5. My question is – has anyone had this experience and, if so, was a BMB indicated or recommended to see if there is advancement of the disease within the Marrow? Also, can this just be an flukey one-time thing just b/c we all know the unpredictability of this disease? Thank you so much. Malissa (wife & caregiver of Leon MDS-RARS-SLD)

[Michael]

If I recall correctly, your husband’s disease is similar to mine, basically manifesting as neutropenia. I often have abnormal rbc morphology, most times they are categorized as +1, meaning 25% of the cells are affected. I get CBC’s about every 60 days. My latest showed normal morphology.

At no time in the last six yrs has either of my hematologist/oncologist’s suggested a need for a BMB resulting from the abnormal rbc morphology. That may be because of the +1 designation. I do travel to NY Presbyterian for an annual BMB.

Best wishes.

[Malissa Kirszenbaum]

Hi Michael. This differential was different than any he has ever had. Although the blasts noted on the neutrophil side (metamyeloid & myelocytes) were under 5%, there were also a few on the erythrocyte side as well. I went back to count and there were 9 abnormal noted as 1+ in addition to that mentioned above and 3% nucleated red blood cells. Take a peak at this. https://www.biron.com/en/glossary/metamyelocyte/#:~:text=Metamyelocytes%2C%20together%20 with%20myelocytes%20and,accompanied%20by%20a%20few%20myelocytes.
The last sentence of the second paragraph. I am very familiar with his routine CBC reports and you are correct I see the abnormal mentions on the differential on each one. Part of his disease. But, this differential looked very different. Just seeing some new mentions, so many, that caught my attention mainly blasts present in both lines (red & neutrophils). All of that in addition to the high Ferritin, drop in Hgb, drop in ANC, his extreme fatigue has made me a bit nervous. I have spent more time on the Internet just reading rereading and re-familiarizing myself with this disease than anything else over the last few weeks. After Friday’s results, I found myself back in time – 2018 – when I tried to find out as much as I coul, educating myself, being prepared and knowledgeable as I felt ignorance was not bliss as far as this disease goes. I finally stopped because I found that I was wasting precious time and instead we just enjoy needed to enjoy each and every day. Maybe I should stop overthinking all of this. I can tell he has changed a little bit. I guess we’ve been pretty blessed with no real treatment plan yet although we have now had several blood transfusions. Also the oncologist is now talking about the ferritin level, chelation, and possibly procrit, etc. Thank you so much for your encouragement, I think I needed to hear that.

[Malissa Kirszenbaum]

Btw, our COE is Sydney Kimmel (Johns Hopkins – Dr. Amy DeZern). One more round of tests next week and we will be meeting with the oncologist. It was mentioned that if his hemoglobin did not start going up to pre-surgery levels that they were probably going to do another BMB.

[Anne Ellis]

Hi,my twin sister Gloria gets many of the same mentions she also has ring cideroblastic MDS.I feel that your husband is going down the same path.she’s just a little bit farther down the road.my sister is Complicated by the fact that she was born without her bladder and she is an ostomy patient and has frequent kidney infections.since she does not have the proper blood cells to fight kidney infections she often sees these changes that you are mentioning. we have noted that when she has an infection the red blood cell and white blood cell morphology and changes quite a bit.I mentioned that she has a little further down the road because she frequently needs blood transfusions about every 2 to 3 weeks.it should be noted that she requires blood transfusions at 8.5 hemoglobin because her red blood cell morphology is so compromised similar to your husband’s morphology. a person with normal red blood cells would not need a blood transfusion at 8.5 but because her red blood cells do not operate properly she needs it sooner and that is something to keep in mind because she becomes weak when her hemoglobin is at 9.5 when she used to become weak one or hemoglobin is at 8.5. they still wait until REM is about 8.0 to give a transfusion because she had had so many.her ferritin is over 2500 and she has been on chelation for a couple of years. she was surprised when they asked her to go on generation because it was not that bad but if you don’t start early enough you’re always playing catch up so I would definitely think about starting too late and although it comes with its own risks.my sister is also on dialysis due to her kidney issues so that adds a whole new equation to the Ball Game. dialysis patients are often anemic even without having MDS.

one of the reasons I am replying is to tell you that I am in the same boat where I want to constantly research to find out more. I don’t think we should feel guilty for this we are trying to gain a sense of control by having the knowledge available when we arrive at the ER for an unexpected visit or with new bone marrow biopsy results. it also gives me something to do at 3:00 in the morning when I can’t sleep.she just texted me last night they’re hurrying alone is 7.2 which is extremely low for her. as I mentioned her red blood cells do not operate properly so 7.2 can be pretty dangerous and it was just 9.4 a few days ago so it makes me feel like she can drop so quickly and it could become an emergency overnight. she doesn’t have a platelet problem but she also does bleed easily. so sometimes the numbers can be confusing because even though her number is of her platelets aren’t that bad it’s because the platelets do not operate properly when there is that morphology involved. I guess they get clumpy and stick together and do not carry the oxygen nobody should. we are 58 years old or 59th birthday is end of September and I’m just hoping she makes it to our next birthday. I don’t know if I’m just thinking negative but it is beginning to feel like we are close to the end. that’s why I say begin that relation as soon as possible she just had an MRI in her liver is being affected by the iron and the chelation.
this brings the old saying what doesn’t kill you makes you stronger to a whole new level. that chiliation may kill you or it may make you stronger. she takes both arinesp and red Roselle in hopes that she would not need blood transfusion so frequently,but these drugs also are high risk of blood clots especially when you are also on dialysis. hopefully your husband will not need dialysis anytime soon and this will give him a much better quality of life and chance of responding to the medications. MDS is so hard because you always want to know how much longer they have and you have no idea they say low risk but and there’s nothing low risk about it really. even low risk patients only have a 5-year survival rate in case you didn’t know. it only means that it is a low risk of chance transforming to leukemia. MDS is a fatal illness all on its own so saying low risk can be deceiving in my eyes. not trying to be a downer I just like you like to sit in a place of informed reality to me is less scary than assuming what you don’t know won’t hurt you…I wish you the very best, and if you have any questions about my sister’s treatment or her path. I am very open to sharing our experience. we’ve tried just about everything and up until now it has been working…She has been fighting to the mail and I feel like sooner or later she’s going to get to tired. she literally spends every day just trying to stay alive she has dialysis 4 days a week and she has injections on the days that she doesn’t have dialysis and she has to drive almost an hour to get the injections…she is on very heavy duty antibiotics for the infections almost every day…I don’t know if your husband has a problem with fighting infections but you may want to look into that …like I said when Gloria’s blood changes it is often because she has an infection. for her it is her kidneys but it can be pneumonia or intestinal infection just about anything. wish you the very best with the appointment that you have coming up and hope that you get the answer that you need…and hopefully with that, new treatments it’s almost good when there is a change because then you get an opportunity to have a new treatment wish may prolong and give him better quality of life 🙂 of course that is the goal.don’t feel guilty about reaching out and trying to get more information and trying to learn as much as you can about something that is completely taken over your life.I think it gives us a sense of security to know as much as we can…it’s like an ugly monster if you can see it you can fight it!
Fight on!

[Malissa Kirszenbaum]

Thank you Anne for all the wonderful information you shared. It is both Informative and supportive. Gloria is so blessed to have you as a sister. I hope and pray that Gloria’s journey gets easier Anne. My goodness, what a fighter Gloria is having to juggle all that she does. Having you as a sister I am sure helps invigorate her well to keep fighting.

Leon goes for his next round of tests tomorrow and we are due to meet with the oncologist on Monday. I hope he proves me wrong but based on his level of energy, tiredness, and long resting periods, i’m thinking that his hemoglobin has not gone up much. I found her information regarding the morphology abnormalities to be very informative. Thank you so much for taking the time and sharing. In addition to all the abnormal tees which, like you mentioned, we are so used to seeing, it was the appearance of the blasts in the peripheral blood for the first time that really caught my attention. Leon had a fib several years ago and after two ablasions was able to stabilize. Like you said everyone is different and I do not think a level of 10 for hemoglobin is good for him based on what I have been seeing of late. Also we do not want the a fib to get stirred up which can happen when hemoglobin levels go down.

We always knew that there would come a time where the watch and wait would transition into some type of needed treatment. I guess in my mind I always remind myself that he is “low risk“ but that is only as to transition into AML not the journey and all the challenges it presents.

I do have some very good questions for the oncologist next Monday and as soon as I receive an update I will post it and share it with you. In the meantime I will pray for Gloria and for you for better days. It’s must be so very difficult watching your sister have to jump through so many hoops without a great amount of improvement. Hang in there, do not lose hope. Best, Malissa

[Anne Ellis]

Hi Malissa,

I realize that I never replied to you to thank you for your kind words! Thank you for caring and replying with information and encouraging hope!
Wondering how Leon is doing? I happened across this conversation from months back and wanted to check in. I visited with Gloria today. She is very weak and miserable but hanging in there. She is on palliative care, and they have told her to expect her time to be a few months to a year. It is so frustrating because we don’t truly understand why. They stated that they freqquent blood transfusions will cause problems but this has been going on for years. I’m not sure if it’s just because the signs that she shows of her energy level continuing to drop and retaining a lot of fluids and a lot of comorbidities.

Anyway I hope we honest doing well and just wanted to check in:)
Best wishes,
Annie

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