Dan’s Adventure With MDS

When you hear the name of a disease the first reaction is WTH does that mean. Well, Myelodysplastic Syndrome is a Bone Marrow Failure Disorder in which the bone marrow fails to produce enough healthy blood cells. Low numbers of white blood cells can cause infections to take hold, low red blood cells will cause anemia, and shortness of breath, and low numbers of platelets will cause the body to not stop bleeding. You can find a more detailed description  of MDS at  http://www.mds-foundation.org/ .

My adventure with MDS began over 4 years ago when my primary physician had lab work redone due to differences in the size and number of red blood cells. A visit to a oncologist/hematologist and a bone marrow biopsy in Feb 2011 confirmed the diagnosis. MDS is a disease or condition usually attacking older (65+) men but also is found in women and children. A lot of cases, like mine, are of unknown origin but it can be caused by radiation used to treat other cancers as was the case with Robin Roberts or exposure to chemicals such as benzene.

My treatment began in 2011 with injections of Aranesp ( http://www.aranesp.com ) for anemia and labs every 3 weeks to monitor the progression. After over 2 years treatment and a great deal of research I decided to seek a second opinion on my condition and treatment and made an appointment with Siteman Cancer Center, Washington University School of Medicine here in St Louis.

Since Feb 7 2014 at WashU I have had 71 chemo treatments with Vidaza ( http://www.vidaza.com ).- some were 5 treatments every 4th week and others were 7 treatments every 4th week. A port was installed in an artery in my neck to allow easier access for infusions and blood draws. I’ve had blood work every week and sometimes it was multiple  times in a week. I’ve had several blood and  platelet transfusions and medications for nausea and other side effects of the disease and its treatment.

My treatment so far has been hundreds of thousands of dollars. I do have Medicare (Thank You Lyndon Johnson and others) and an excellent supplement with UPREHS, (Thank You TCU and UP) due to my 37 year employment on the UP Railroad.

The support I’ve received from family and friends, especially my wife Pam and sister Cathy, has been overwhelming. My current condition and frame of mind would have been much different without their encouragement.

My intention originally was to add updates on my Adventure on facebook but I think a blog dedicated to just this will be much better. Anyone interested can “look in” at their convenience without the distraction of facebook.

The plan now is: I will be admitted to Siteman Cancer Center April 2nd, receive a Bone Marrow Transplant on April 9th and remain in the hospital 4 weeks or longer depending on how I recover from the transplant. After being released I will have periodic exams and labs for 100 days and less frequent exams until 1 year after transplant. The schedule now is admission March 22, 2016 and transplant March 29….Dan 2/17/2016

I have added a few charts showing some of the blood work over the past year and will continue to add that and more information during my hospitalization, depending of course on my reactions to the treatment and how I’m feeling.

Thanks to all my family and friends for your support.

Dan

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Update 8/13/2018

A few comments made on facebook about problems associated with Stem Cell Transplant patients cognitive and reasoning issues.

So last night someone said something about me and my keys and misplacing things. It’s a running gag with my inner circle. It rubbed me the wrong way last night and I was explaining that it’s not because I’m an idiot but because of the way my brain works now from all of the meds and treatments. It put me in a crappy mood and I posted about it. I had a hidden agenda for posting, which was, to have something to show that it’s not just me and not so much for advice.

I have most of it under control but it’s the short term stuff that I have a hard time with. Putting something down and losing it within minutes. What I was hoping for was “me too” and “the struggle is real” so I could show them. I have my life pretty well organized for everything on the long term side of things. I don’t have that much going on these days. Appointments, meds and so forth. I added a hook for my keys next to the door and I bought a Tile which helps with my keys and my phone. I just needed to prove that we have to work twice as hard and that what I’m experiencing is real and not just because I’m an airhead! If my post and responses didn’t come across the right way, I apologise. Sometimes I forget that you all cannot hear my inner voice when I’m typing and my sarcasm and tone doesn’t translate. Thank you to those who shared and helped me out though! I appreciate it and this group!

 

Nancy Bickel I have to place things in “their ” spot or crap I’m looking everywhere for it! I hear ya and it sucks

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Cherry Lam My friends and even the docs say wow if you consider this bad you must have been at genius level before. I keep having to explain to them that when you grow up a certain way, that is your normal. And all of this has caused you to drop below your normalwhich is extremely frustrating. And no I didn’t and don’t consider myself a genius, I actually knew a couple and they were scary smart. I don’t think anyone really understands unless they have gone through it.

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Stacie Sierra No it’s not just you…….. my inner circle is always frustrated because I forget things within seconds, lose things, and they’re always saying “ pay attention” and other comments that suggest it is a choice to be this forgetful, not even realizing that it’s 10 times more frustrating to me. Thank you for your post and adding another connection for us to see that we’re not alone in this.

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Andrea Comparoni You are not alone. (Virtual hugs)

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Gisele Lapointe Van Dijk Hey that’s me 😦

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Jim Sims Chemo brain is real

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Karen Holden Yes it is. My brain sometimes feels like its in a fog!

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Mike Chubbs Walters You’re def not alone. Sometimes I can’t even finish a story cause I just forgot what I was saying mid sentence. Ppl have a hard time understanding. Just keep on keepin on!

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Cherry Lam Yes! My brain seems to wander. Like, the dog Doug in UP. Telling the story…SQUIRREL!

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Sue Goodfellow I’ve find myself reluctant to tell stories now, as I can’t always remember particular words. I get very frustrated with myself!

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Nicola Byrnes Me too! I struggle with words, trying to find the right one and often using the wrong one, So frustrating! And my memory is terrible in comparison to what it was. I forget conversations with my husband even if it was just 5 or 10 minutes ago. I worry that maybe it’s not just chemo brain but could be dementia

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Sue Goodfellow I worry about that too! 🙄

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Lisa Jacobowitz I didn’t see your earlier post but Me Too! My short term memory was chemoed away. I have always had a razor sharp memory and have been totally organized. Now there are blanks. My recall strategies no longer work. Either I remember or I don’t. After almost 4 years I am trying hard to just accept it and deal.

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Lisa Jacobowitz I write things down multiple times and have notes all over the place. Long term memory still pretty amazing. I had AML and wouldn’t be here otherwise, so be it

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Cherry Lam Yes my long term is starting to come back. Short term is still crap from everything. 😛

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Heike Campos My daughter has a lot of these problems too. Sad thing is, she visits a special school for handicapped pupils, and her teachers still won’t accept her problem. They think she just has to concentrate and that’s it. Maybe I will show her teacher this post…..

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Allison Gower My 18yr old has it too. Some days it’s ok, others I find BB guns in the freezer where he got out something and left it behind. It was very touch and go teaching him to drive and multitask. He was 14 at DX and 15 at transplant. We try to joke about it but it’s really frustrating for him, makes him feel not in control when it happens and he has no idea where things are.

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Janna Everett Marazita My daughter had her transplant 3 years ago – she too has chemo brain still, so I can’t say “me too”, but I CAN say “her too” and “we understand”.

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Cindy Emery Szvetecz You are soooo not alone in this struggle. I hate it! Like you I am NOT an idiot but can’t help it now 😞

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Meredith Garr Kilmer It’s real. What chemo and radiation does to our brains is destructive. Your inner circle are a bunch of idiots for not realizing that chemo would have a huge effect on memory.
Drugs fry brain cells. Chemicals fry brain cells and you have had multiple …See More

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Michelle Lytsell you are not alone!!! i have learned to always put certain thing in certain places so i can always find them.. my keys are the biggie – i always hang them up on the hook..and i always keep my purse in the same spot in the house and if i take earrings …See More

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Nicole Jenkins Wow, you posted this at the perfect time. I have been doing stuff like this for awhile now and it irritates me because I have always been on top of everything. My husband and I own a business and I have to remember a lot of information, be able to mu…See More

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Jason Barnes My wife has the same issues. She has a completely different brain from before chemo and transplant. We carry on same conversations many times simply because she doesn’t remember them.

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Lisa Jacobowitz Ugh. I do that😞

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Scott Jordan It’s so real mate. We get you. And I love your sense of humour and sarcasm, you hang onto those, it’s a strength.

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Dianne Callahan I have it too but the sad part is I keep refusing to believe it so I get frustrated with myself a lot!!!!

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Jan Jennings I struggle too with short term and some long term memory, and I have to be reminded of things all the time and if I didn’t make a list when I went grocery shopping there’s no telling what I will come home with!

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Marlene Wagonschutz Munk Chem brain is real! I feel like some of the medications make me feel like I am brain dead!

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Nancy Wolanin Guy and others! I think you hit a live wire with the memory topic! Wow! I used to teach Kdgn and Special Ed before leukemia! My tricks in helping others learn have come back to haunt me! Never thought I would need tools to remember! One of the …See More

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Edward Riley I forgot what I was talking about in the middle of the conversation. I was a professional writer and now I struggle with basic punctuation.

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Lisa Jacobowitz I was a litigator. You have to be sharp and spot on. Clearly that isn’t happening. I now mediate very part time. It is less stressful and I can refer to my notes. However, I can’t handle a regular workload, my brain no longer has that capacity and the fatigue is so unpredictable. As I said, I am still trying to adjust. I recently likened it to a chemically induced tramautic brain injury.

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Jane Vins Comden When I told my sister that I am still struggling with memory issues and analytical skills, she told me that she heard a TED talk about the brain functioning as a muscle -the more one exercises it, the better it gets. What she doesn’t get is that this is how a normal brain functions. I don’t have a normal brain anymore. I look well on the outside, but I struggle to return to my former self mentally.

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Brenda Burke Embrey I have had three different cycles of chemo,- Breast cancer twice, and the night, MDS,- chemo brain is very real. And to some lab techs, Chemo veins are real, too.

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Melisa Davis I completely understand! I’m 33 and have a tile for my keys and need one for my phone, I even forget what I had for dinner. ..I eventually remember. Don’t be so hard on yourself❤️ you’ve got this, just at your own pace

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Andrea Campbell Massey I can truly say, “Me too, and the struggle is real!”

 

 

 

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Update 6/8/2018

Today is day 800 since my transplant. I had labs drawn and another phlebotomy. My HGB was 14.1, and all others were normal or nearly so. WBC 6.6, RBC 4.32, PLT 134. The one I was most concerned is the Ferritin level. Before today’s phlebotomy it was 825 – down from a high of 5773 in Dec 2016 and should go lower, so this may be the final phlebotomy. I feel well and am doing all that I want to do. I put out the biggest garden that I ever have.

 

I think this will end my posts – they have gotten fewer and farther apart because thankfully there is no news to share.

I wish Pam was here to witness the outcome of all her efforts in helping me through the toughest parts and all my family and friends offering help and encouragement.

Thank all of you…………..Dan

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Update 4/15/2018

I am 2 years and 2 weeks post transplant. My visit Friday was lab, Nurse Practitioner and treatment center. Lab were good. All the nurses were happy with my continued progress. I received 5 shots – Polio, Tdap, PCV3, Hib, and Hepatitis B. Also phlebotomy. I had 4 shots in Jan and 10 more to go. My Ferritin level was as high as 6500, in January was 3200 and today 1652. Phlebotomy will continue until an acceptable level is reached. High normal is 400.

Serum iron profile Final
Description Result History Expected Units
Iron 180 High 50 – 150 mcg/dl
Iron binding capacity, unsaturated
95 Low 112 – 347 mcg/dl
Iron binding capacity, total
275 250 – 400 mcg/dl
Transferrin saturation
65 High 20- 50 %

Serum ferritin
Final
Description Result History Expected Units
Ferritin 1652 High 30 – 400 ng/ml

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Update 1/12/2018

I had my monthly visit at Siteman today starting with lab at 915 am, visit with Dr. Pusic, Brooke, and Nicole at 10 am and treatment bed at 11 am. Labs were good or very good. The only one I was unhappy about was my Ferritin level increased instead of staying on it’s downward trend. Normal Ferritin level range is 30-400. Mine was 3,246.

Dr. Pusic and her staff seemed happy with my progress, lack of complaints and feeling of being well and living a normal life.

In the treatment center my monthly phlebotomy was done. After the IV is inserted it took 6 minutes to drain about 1 pint of blood.

One thing I knew was coming but didn’t expect today was the start of immunizations. This is necessary because after a stem cell transplant the patient is left with no immunity. Today  I received injections (Nurses always say “you will feel a little stick”) Hib Vaccine – Haemophilus Influenza Type B, DTP – Diptheria Tetanus & Pertussis Vaccine, Polio Vaccine, and PCV13 – Pneumococcal Conjugate Vaccine. This is the first four with more to come at my next visit in February.

I am now taking 5 drugs per day. I’m taking nothing that is related to stem cell transplant

Soon after my first visit to Siteman in Feb 2014 my life expectancy was estimated to be 2 1/2 years if my MDS went untreated. That would have been August 2016.

Description Result History Expected Units
WBCs
6.7
3.8 – 9.8 K/cumm
RBCs
4.33
Low 4.50 – 5.70 M/cumm
Hemoglobin
14.8
13.8 – 17.2 g/dl
Hematocrit
43.8
40.7 – 50.3 %
Mean corpuscular volume (MCV)
101.1
High 80.0 – 97.6 fl
Mean corpuscular hemoglobin (MCH)
34.2
High 26.7 – 33.7 pg
Mean corpuscular hemoglobin conc. (MCHC)
33.8
32.7 – 35.5 g/dl
Red cell distribution width (RDW-CV)
14.1
11.8 – 14.6 %
Platelets
185
140 – 440 K/cumm
Mean platelet volume (MPV)
7.0
6.8 – 10.4 fl
Neutrophils
57.6
38.7 – 74.5 %
Lymphocytes
30.0
20.0 – 54.3 %
Monocytes
8.6
4.3 – 13.5 %
Eosinophils
2.0
0.0 – 6.0 %
Basophils
1.8
0.0 – 3.0 %
Neutrophils, absolute
3.9
1.8 – 6.6 K/cumm
Lymphocytes, absolute
2.0
1.2 – 3.3 K/cumm
Monocytes, absolute
0.6
0.2 – 1.2 K/cumm
Eosinophils, absolute
0.1
0.0 – 0.5 K/cumm
Basophils, absolute
0.1
0.0 – 0.2 K/cumm
Nucleated RBCs
0.1
0.0 – 0.2 %
Nucleated RBCs, absolute
0.01
0.00 – 0.01 K/cumm

DescriptionResultHistoryExpectedUnitsSodium

142

135 – 145mmol/LPotassium, plasma

4.0

3.3 – 4.9mmol/LCarbon dioxide

29

22 – 32mmol/LUrea nitrogen (BUN)

16

8 – 25mg/dlGlucose

155

See *170 – 199mg/dlCreatinine

1.02

0.80 – 1.30mg/dlCalcium

10.0

8.5 – 10.3mg/dlChloride

104

97 – 110mmol/LAlbumin

4.3

3.5 – 5.0g/dlAspartate transaminase (AST)

68

High10 – 50Units/LAlanine transaminase (ALT)

52

7 – 55Units/LAlkaline phosphatase

142

High40 – 130Units/LBilirubin

0.6

0.1 – 1.2mg/dlPlasma protein

6.8

6.5 – 8.5g/dlAnion gap

9

2 – 15mmol/L

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Update 12/11/2017

Today I saw my Ophthalmologist, Dr. Todd Margolis, Distinguished Professor and Chairman, Ophthalmology and Visual Sciences, Barnes Jewish Hospital whose areas of clinical interests are External disease, uveitis, herpes viruses, latency, herpes simplex virus, varicella zoster virus, cytomegalovirus, AIDS, molecular diagnostics, cornea, telemedicine. He has been treating me almost 2 years for Graft Versus Host Disease which is a complication of the Stem Cell Transplant I had 615 days ago. After the exam and discussion of my progress he said “come back in a year”. Those are the words I look forward to hearing every visit with each of my doctors. He is the third to tell me this. I have 7 more to go. Now ask me why at least once a week I am on facebook advocating for affordable health care for every American. ACA was a step in that direction. I am ashamed that we are on the verge of taking 2 or more steps backward.

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Update 12/5/2017

Here are appointments on my calendar for the next months. Of course more will be added.

611 days post transplant, appointments:

Mohs surgeon consult 12/4 – Dr. Kohli scheduled the surgery for Jan 8 at 730 am. Both sites will be done same day outpatient.

Blue Light therapy 12/7 – Each of the 3 treatments has 2 steps. First willl be at 1230 pm the 2nd at 2 pm. I’m not sure but think this is a good description of the process. The most common form of therapy combines 8-methoxypsoralen taken by mouth followed 45-60 minutes later by exposure of the skin to UVA. Less commonly, the drug is applied topically (the medication is occasionally diluted in bathtub water in which the patient is immersed) and then after a few minutes the ultraviolet exposure occurs.

Ophthalmologist 12/11 – My vision has improved and the dry eye condition has improved. Dr. Margolis will assess and plan the next course if anything is needed.

Oncologist 1/12 – Haven’t seen Dr. Pusic in over 4 months. Visit I’m sure will be interesting.

Phlebotomy 1/12 – Depending on iron level probably will take another unit of blood.

Bone Density Infusion 2/16 Fosomax (?) to improve bone density.

Primary Dr 2/21 Hope Dr. Alvarez has no new issues

Liver Dr 3/12, Dr. Fleckenstein – Will once again do liver scan but hopefully no biopsy

Dermatologist 5/9, Follow up on previous teatments

Cardiologist 8/13. Hopefully good news from Dr. Ramadan

And on it goes. I’m happy to be alive and do have a bright future.

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Update 11/22/2017

Today I had more labs and phlebotomy. WBC 7.7 (Normal 3.8-9.8)RBC 4.11 (Normal 4.5-5.7)HGB 14.3 (Normal 13.8-17.2). Not counting setup and wait time afterward phlebotomy took 7 minutes for a full unit of blood. I am happy with the results. Labs showed Vitamin D at 117 is very high so Dr. said discontinue taking it and cholesterol level high enough to re-start Atorvastatin 20 mg daily.

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