[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

[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.

[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]

Amy, sorry it cut off and sent before I was finished. I wanted to tell you that I am so sorry that you were struggling with the arthritis. I watched him and it was so painful. Talk to your doctors and see what they think. They should be able to give you an idea of what to expect. His oncologist warned him that there would be a chance of blood transfusions just because the nature of hip surgery. I hope this helps mostly I hope this note finds you happy and healthy.

[Malissa Kirszenbaum]

Thank you for sharing that Jack. I am so sorry that things are becoming that difficult. You sound like a trooper, do not give up hope! You talked about some thing that really caught my attention and some thing I have not been able to convince the doctor on. Two years ago Leon developed a fibrillation. I kept asking that question since one of his challenges is a low hemoglobin I felt every time he was below 11 it just started to get worse. He had two heart ablation surgeries and the second one has worked so far. However shortly after the hip surgery in July one of the resident doctors was making rounds listened to his heart and heard some thing and decided to have an EKG which turned out to be abnormal. He said that there was some rhythm issues and he too had an echocardiogram while in the hospital and a few other tests. In the US, as long as you are 8.0 or above you are not getting a transfusion unless there is an emergent need. We are experiencing a shortage of blood here so it is very difficult to get them to give you more than one unit or a bag. I do not believe Medicare will even approve of a second transfusion after you reach 8 or above. They discharged LEON after several transfusions the highest his hemoglobin got was 7.4. They said that the surgical team were in contact with Leon‘s local oncologist and his oncologist at Hopkins a care of excellence, and that they would take care of any transfusions LEON might have outpatient. They said the greater concern was him staying longer than the seven days because what they didn’t want to happen was for him to get an infection. Apparently when you have this type of surgery if there’s an infection that develops in the body the source of surgery becomes like a beacon for the infection. They said in his case that could become a very serious issue where he could lose his leg or die. Every time I tried to speak up they always had an answer and I’m not very good with adversarial conversations lol LEON is so tired that he just lets half of everything go, that is not me.

I will include you in my prayers Jack and your family. This is not easy stuff to deal with and I am only the caregiver. LEON has a pretty good attitude most of the time but this surgery really took it out of him. I was so disappointed with Friday’s results and hope that he can at least climb back up to his pre-surgical numbers. Yes he is dizzy and yes he is tired and breathy but it was something that he had learned to cope with. We rely on our faith heavily and we do believe in the power of healing. I guess we just keep on going doing our best, hoping for the best.

[Malissa Kirszenbaum]

Hi Amy. I can’t answer your question as to the Vidaza but it did change his blood counts after surgery. 24 hours after surgery his hemoglobin went from almost 11 down to 6.2. They had to transfuse him for the very first time with two bags. The problem we’re starting to see now, for the very first time, one month out, is that his bone marrow has not yet taken over to replenish the hemoglobin. The oncologist told us next week would be 30 days since his last transfusion and based on his blood results Friday it looks like he’s going down instead of up. We were just wondering whether or not the surgery instigated some thing that is going to become a new challenge. So far they have watched his red and white counts without having to give treatment. The last discussion had his oncologist starting to talk about perhaps procrit and chelation to get rid of the iron overload. So things may be changing a little. If he continues to go down with the hemoglobin they are going to take a bone marrow but see in September to see if his disease is advancing.It was a quality of life decision for him. He was in so much pain he could not endure and decided to have the surgery. The oncologist said that people with MDS usually make surgical decisions as a last resort because I can get a little rocky postsurgical. He felt that it was a serious quality of life issue for him.

[Malissa Kirszenbaum]

Hi there ask4angels. Just saw this post, a bit dated response (maybe you have received your hip replacement now and are feeling great.) My husband is low risk RARS low hemoglobin and low neutrophils. No treatment yet but ferritin levels getting high (non transfusion related). His left hip pain was so bad he could not put off surgery another minute. Surgery went well as to hip, however, his hemoglobin tanked at 6.2 and needed two blood transfusions and wound up 7 days at Hopkins. We are one month post surgical now but his hemoglobin is not returning to his baseline low (11.5) and heading back down under 10. How did your counts do after surgery? It seems like the surgery has stirred some new challenges up. Hoping you are doing well with that new hip. Thank you. Malissa

[Malissa Kirszenbaum]

Hi Michael. I’m so happy that you are able to enjoy a sport you clearly love. Good for you. Your question is a good one and one that we had to ask LEON’s oncologist. His oncologist said that surgery with MDS patients should always be the last resort because of the vulnerability of infections and such. Leon’s was definitely a quality of life issue; his hip was so bad that it was impacting all things. His hip surgeon consulted with his oncologist and they discussed what vulnerabilities LEON would have going in. Thankfully his ANC has been at 1.9. We were told that without an ANC of 1.0 it would be difficult to get surgical clearance. His surgeon knew that his hemoglobin was low going in and most assuredly his oncologist knew that LEON would have to probably be transfused. First time since his diagnosis. On the morning of surgery they went ahead and started the blood typing so that after surgery they would be in a position to transfuse him. Because his ANC was 1.9 going in, she felt OK that the risk for infection was not the greater concern. So to answer your question, the surgeon and your oncologist/hematologist would probably discuss the best approach if you were to have knee surgery. They may think that treating you prophylactically going in would be a safe route to take. LEON was originally scheduled for his surgery the Friday before Mother’s Day. He caught a 10 day virus, not Covid, and the surgeon decided that he was going to postpone the surgery for an additional two months just to make sure that LEON fully healed as infection after hip surgery or in your case knee surgery, could become a very serious problem. My husband was a pharmacist but had to retire in 2020 due to health challenges and his MDS. He stood for 38 years on his feet for 12 and 14 hour a day shifts and his right knee is pretty much not good. He does the gel and it is very helpful. I’m glad it is working for you too. Based on the experience that we just had, nowadays a hip replacement surgery scheduled in the morning allows you to be discharged same day. We wound up in HOPKINS for seven days not because complications of the hip replacement but the surgery itself. Leon tossed and turned “should I or should I not do this surgery” almost 6 months. He knew he really had no choice if he wanted to have some quality of life. I hope this helps some but I think you should really have a serious discussion with both a surgeon and your oncologist and it may be that they can put measures in place that will give you the best protection. I hope the Gel continues to give you the relief you need to keep on living life. My prayer is that the surgery has not stirred something up and that his bone marrow takes over and helps replace his RBC volume. We will know probably over the next two weeks as this last transfusion will have fizzled out. If his CBC indicates otherwise they are going to do a bone marrow biopsy to see what progression,if any, is occurring.

This really has been the first major challenge since his diagnosis. We have been relatively blessed when looking at the big picture. We approach each day with a positive attitude and hopeful spirit. It sounds like you do the same. That is a good thing. I hope this helps a little.

Best,
Malissa

[Malissa Kirszenbaum]

Thank you Michael for sharing. I hope this finds you well. Just an hour ago, Leon’s onco/hemo called to talk about his recent bloodwork last week. Something new came up with his Ferritin levels. Dr. C told Leon his count has been steadily rising and is now at 775. He discussed concern and went over with Leon the chelation process as a high ferritin level can cause injury to the liver and other organs. After that discussion, Leon brought up the question regarding joint and muscle pain. Dr. C did not think related to MDS but rather perhaps inflammation and/or small infection his body was trying to fight. Did not make sense tome but we simply listened. I was more concerned about the change regarding elevated Ferritin. I believe his category is MDS-RS-SLD (although he is double now since becoming chronically neutropenic). It seems we have had. Few changes in last 2 years. I suppose this is all a part of this confusing disease. I have not looked into the side effects for the chelation; the doctor said there were a few, but overall the treatment would be helpful.

Thank you for sharing your challenges. Prayer is powerful; I pray for everyone here to be healed and feel better!

Best,
Malissa

[Malissa Kirszenbaum]

I hope this finds all well. Just a question – My husband is 66yo and is 6 years in with a low risk MDS diagnosis. Initially, his RBC, hemoglobin/hematocrit were on the low side. A year ago his WBC started dropping and his ANC ranges from 0.7 – 1.4 putting him now in a moderate neutropenia range. He has not had to start any treatment yet. His onco/hemo and infectious disease doc are at John’s Hopkins. Yearly BMB’s. About 6 months ago, he began noticing pain in his feet, his arms, his hip. The pain has steadily increased so much so he feels like he needs a hip replacement; pain has effected quality of life for sure. I was wondering if anyone else may have experienced something similar?

Thank you.
Malissa

[Malissa Kirszenbaum]

Hi Donna. July has been a whirlwind. Leon had to take an unexpected one month leave of absence from work; no energy to stand 12-14 hours in the pharmacy (pharmacist). The strange thing is that his CBC numbers are the same (still abnormal low) but he feels worse. Went in earlier this week (Thursday) to visit local hemo/onco. While waiting in exam room at 9:30 a.m. Leon suddenly felt nauseous, excused himself to the restroom, and vomiting/diarrhea ensued until about 3:30 in afternoon. Dr. felt it was another bout of food poisoning. Poor guy, we live on an island and had a 45 minute car ride that was very unpleasant for Leon.

Anyway, Dr. wants BMB done next week, no waiting until for HOPKINS. He is hoping to glean something from the upcoming report. I hope the temporary rest from work (Aug. 1st start date) helps him regain some energy. I think we are all scratching our heads now, including the doctor. His Hopkins appointment is August 16th. His spirits are a bit lower than I like. My head just hurts from all the work related phone calls establishing leave of absence, short term disability, benefits, etc. my heart aches because I hate to see him feeling so poorly. The Dr. mentioned that should the BMB not tell us anything definitive, he was going to order a full body scan of sorts.

I hope you are smiling and feeling good today.

Malissa

[Malissa Kirszenbaum]

Cheryl, although my posts here so far have not been too many, everyone here is so compassionate and patient with listening and sharing their own journeys. Thank you for sharing yours. I sincerely hope your days get easier so you can enjoy the things that bring you joy. I am sorry for your struggles. While our faith gives us comfort and hope for beyond, everyday struggles seem impossible sometimes. Hang in there and continue to reach out here; amazing people here in this special group of people.

Best,
Malissa

[Malissa Kirszenbaum]

Thank you so much for sharing your journey Teri. My husband, almost 63, has been on wait and watch for almost 3 years now, mainly struggling with low RBCs, tired and afib/afib flutter challenges. All other diseases, deficiencies and autoimmunes ruled out. Like your husband, his attitude and zeal for life has always remained high. He did not let it stop him, just took it a bit slower. His first and only BMB did not show MDS, just hyper-cellular with excess iron stores, blasts were a little under 3%.

In February, 2019, right before a scheduled trip to Jamaica, he started getting ill with bouts of food poisoning, throat/tonsil virus, skin infections. We left on April 3rd as planned because he said he felt fine. Prior to that he was a bit stubborn and did not bother seeing our primary for these illnesses. At that point, we only knew his RBCs were low/anemia so he thought this bad streak would pass.

Three days into our trip, he developed a skin infection and a fever of 102.5 and he felt very sick. We got a flight back home, saw his primary and he was hospitalized with influenza A, afib & afib flutter and he was neutropenic. This continued through May.

All CBCs since are now showing both low RBCs, WBC and neutrophils. Although his local hemo wants to wait for one more CBC and a second BMB before firmly giving a an MDS diagnosis, he has been accepted into the Sidney Kimmel Cancer Center at Hopkins in early August.

Your story, like so many others here, humbled me tonight. My recent fear, sadness and self pity were lifted a great deal. Truthfully, it is the first time since allowed myself to feel it so deeply. Your story is one of strength, love and determination. I can only hope and pray that wherever this takes us, we too can face it with such optimism and hope. My prayers tonight for you and your husband and every precious person here fighting this battle and their families.

God bless you and your husband Teri.

Malissa

[Malissa Kirszenbaum]

Thanks Kathy. One of the reasons I encouraged him to let me set something up at Hopkins was b/c his hemo wanted another BMB. Thought it better to get it done there since they seem so proprietary with specialized testing at their hospital. Did not want a Leon to have to go through a third one. I think maybe my thinking is wrong. We are going to call his local hemo tomorrow and take it from there. Yes, his health and energy have changed drastically. His first BMB showed 65% hypercellular and abnormal RBC morphology. His blast count was under 5% with no abnormal cytogenics, however his hemo advised that these things can change slowly or quickly. Do you think he HOPKINS doctor is seeing him b/c she sees enough to strongly feel he should be there now, despite his local dr. Waiting another month to commit to a firm diagnosis?

I hope you are enjoying this day with smiles and peace.

Malissa

[Malissa Kirszenbaum]

Hi Michael. The two ointments seemed to do the trick. Abscess not as red and skin around not as hot to touch; less painful. I took about eight hours this weekend here on the forum reading a number of stories and comments. It does help put things into perspective reminding us that everyone’s body is different and reacts uniquely under otherwise same scenario counts. Three people with equally low counts have different quality of life challenges, some none at all. I guess we will learn Leon’s soon enough. The WBC’s and ANC counts are a new phenomenon for him really. The anemia was the challenge in the beginning and that was a simple fix really, Leon working at his pace taking breaks when needed, taking naps etc. No real biggie in the whole scheme of things. It does worry me that his WBC/ANC have changed and he is visibly symptomatic. It does not help that he has a cranky heart suffering with persistent a fib and a fib flutter. The low hemoglobin just irritates it that much more.

We have a bright side too! We have 4 children and our oldest daughter is expecting our fist granddaughter in October! We are so very excited. Our kids have been moving in a very slow lane in this regard more emphasis on their careers. Our oldest daughter married two years ago and we cannot wait to meet our granddaughter.

Be healthy and happy!

Best,
Malissa

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