Bone marrow failure of unknown cause
 

Hi, I originally posted in MDS forum but have been thinking I was on the wrong site. I have just come home from a 2 day stint in hospital for my regular transfusion of 5 units. My doctor tells me that my white cell count is a bit low at the moment and to be careful and monitor my temperature. He didn't tell me what the count was but he did add that the neutrophil count was a bit low but it was the lymphocytes that were very low. We had a short talk once again about the ultimate outcome from whatever is wrong with me and he said that he is reasonably certain that I have MDS or something similar !!! and although the transfusions every 5 weeks were keeping me stable that it may be time to start testing for bone marrow transplant. He has mentioned transplant before but I didn't want to know and used to change the subject. I used to go home and wonder if he meant stem cell or bone marrow transplant. I thought stem cell wouldn't be too bad but that bone marrow transplant would be very scary. Well, lucky me, it looks as if would have to be bone marrow transplant. That is all I wanted to know at this time, after all, the choices with me are, baby steps or bury my head in the sand. Procrastination has always worked in the past. Bye. Chirley

Chirley,

I suggest that you ask for your blood counts each time they are measured so you can keep track yourself and so you'll know whether your counts are low, critically low, or only borderline low. The more information you have about your condition from week to week, the better you can track your own progress and the more confidence you'll have about getting (and asking for) the right treatment.

I remember that you mentioned the possibility of a transplant, a couple of months ago (here). It is worthy of consideration, since a transplant can be a true cure, but a transplant can also be a frightening prospect due to the risks. You can allay some of the fear by learning more about the process, to determine whether it offers you the best option.

There are a number of websites and organizations that can give you information about transplants. See the Bone Marrow and Stem Cell Transplantation section of our Resources page. For information specific to Australia, you can talk to the Leukaemia Foundation or connect with other patients at Talk Blood Cancer.

When the doctor refers to "starting testing for bone marrow transplant" he may mean the HLA (protein antigen) typing required to identify potential donors who match you. Other than knowing your HLA type and whether or not you are generally healthy (other than the MDS or whatever it is), I don't know what other tests would be required. That's another question to ask your doctor.

The difference between a peripheral blood stem cell transplant (PBSCT) and a bone marrow transplant (BMT) would be more of an issue for the donor than it would be for you as the recipient. The difference has to do with the way the stem cells are harvested from the donor, either from their circulating blood or from their bone. Your treatment would be the same either way, and you would get the donor's stem cells through an IV.

Definitive diagnosis
 

Hi Neil, I think the reason the doctor wants to do more tests is that I don't have a difinitive diagnosis. All they know is that I've got bone marrow failure but they don't know why. The MDS diagnosis is an educated guess and they want to know for sure what the failure is caused by. I have already had 5 BMBs with out any definitive diagnosis and refused to have any more diagnositic tests until my blood tests show some major change that indicate that the disease is evolving. I know my white cells are dropping but they've done that before and recovered spontaneously without any treatment. Thanks for pointing out that the bone marrow transplant would be the same as a stem cell transplant. I thought that with the stem cells you didn't have to knock out your own immune system but that with the bone marrow transplant that you had to have chemo (or similar)to knock out your immune system. Oh' by the way I have asked my doctor for the blood test results and he nods his head and says "no worries" but then promptly forgets. I only ever see him when I'm in hospital, I don't make appointments to see him in his rooms, so unless he tells the nurses that I can have the results, they can't let me have them without his permission. He can be annoyingly fogetful, but I REALLY like and trust him anyway. I will follow the links you sent me when I have more time. (have to go to work now). and thank you. Chirley

That's a separate treatment decision. The conditioning prior to a transplant can be a full regimen of chemo and/or radiation to try to destroy diseased cells, but that's hardest on the body.

There are also reduced-intensity transplants, sometimes called mini-transplants, with less conditioning. They rely on the the donor's immune cells to fight the diseased cells that remain. Since they are easier on the body, they can be used for patients who couldn't tolerate a full transplant, such as the oldest patients and those with other health problems.

You might have the doctor sign a note for the nurses that says you are entitled to copies of your blood counts. Then you can show the letter to the nurses each time, without the doctor having to bother for every visit.

Release of records
 

We go to "Release of Records" office. My husband signed a release allowing either of us to pick us his record. We just go there about an hour after his cbc and have them give us a copy. We three hole punch them and save them in a big three ring binder with the most current on top. We also record the 5 counts we are most interested in by date on a separate sheet of paper in the front of the notebook. This allows us to track changes much easier. We take the binder to doctor appts., the hospital, when we go out of town - just in case, etc. It contains everything we have gotten regarding his MDS diagnosis from day one. We are only three months in and the binder is almost full, so I can see us having several over time.

Feeling a bit miserable
 

Hi,

I've just arrived home from work and feel totally worn out. I am the oldest and most experienced person in my department and I was getting very suspicious that I was being given more than my fair share of the work. Well, today it was confirmed. My boss told me that because I was so fast at my work that she thought it was only proper that I get the majority of the work and the more difficult of the cases to deal with. This is very annoying because I am on exactly the same pay level as everyone else. My work is quite physically active and I'm starting to find it hard to keep up with the workload. I don't want to tell anyone at work about my illness and I certainly don't want to use my illness as a reason to decrease my workload, but, boy! am I tired.

I usually have my blood tests done monthly but this time I had one done at 2 weeks (last week) instead, just for my own curiosity. I'm 2 weeks away from my next routine blood transfusion and my blood tests aren't too bad, so I don't know why I'm feeling like this.

Hb 80
WCC 2.2
RCC 2.89
MCV 90
Neut 1.1
Lymph 0.4
Plate 297

I don't normally get a copy of my blood results. This time I managed to get them from the hospital ward secretary. I don't want to get her into any trouble so I won't ask her again.

I think that psychologically I'm starting to get a bit depressed. I'm sure in a day or two I'll be right as rain. I almost feel guilty for feeling sorry for myself. I think a treat in the form of a new handbag is just the tonic I need.

Bye for now.
Talk to you after I've been shopping.:D

Chirley

HGB 80 two weeks before transfusion
 

Hi Chirley,
No wonder that you feel tired when you have such problems at your job and have a HGB value of 80 two weeks before next transfusion!

I still can´t really understand why you get 5 units of RBC:s instead of more frequent transfusions :confused: - as far as I understand the bone marrow will lose more of the capacity to make RBC:s if your HGB is very high after a transfusion.

Your heart has to work much harder when your HGB is low - you (and your dr) don´t know how long it will stand the stress.

Your neutrophils are low but you obviously manage without getting infections I don´t know anything about how low lymphocytes will affect you.

Your platelets are very good :) - I wish mine were at the same level.
Kind regards
Birgitta-A
69 yo, last platelet count 49

I don't know either
 

Hi Birgitta,

I don't know why I get so much blood every 5 weeks either. I used to get 4 units every 4 weeks but even that seemed like a lot of blood at one time. The day after my last transfusion I had an episode of L hand numbness, headache, visual disturbance, vertigo and nausea. The doctor thinks that I had a mini stroke but I think my blood was just very thick because I'd had so much blood the day before.

I might ask the doctor if I can have less blood more often and see how I go. He is also worried that I could develop heart failure and that is why he gives me so much blood.

It is turning into a nice cold (10) evening here so I might go and make some soup. Then into a nice warm bed. You must be coming into some lovely summer weather there at the moment. I hope you get to enjoy it.

Bye
Chirley

Question?
 

Hello Chirley,

I have been wondering why you are not on bi-weekly, or as-needed transfusions. Pop gets tested every Tuesday. If he needs blood, they give him 2 units. If he needs platelets, 1 bag. He was going for weeks at a time. Today he gets another blood test. After talking with him, I am sure he will be ready for both today; however, this was already written for him back in September 2007. The doctor was very clear about his path, it's just that he was not expecting pop to be such a Schultze... Ha, Ha.

I can't imagine what 5 units would be like. Pop is fighting with the antibodies that are left after his blood is irradiated and that's only 2 units. {his white count is only at .9 to 1.3 avg.} If it weren't for his neuprogen.....

I was looking at your numbers, have you taken them all and graphed them? that has helped us determine what Pop's weeks, or good/bad days were, mostly, caused by.

Hope your feeling better.

Scott
Son of Bob

don't know whats wrong
 

Hi,

I have had a bit of a problem in the last week. I had heart palpatations a few times on Friday night and when I got out of bed to get a glass of water, I felt faint and had to sit on the floor. I have been feeling well and thought that I wasn't as anaemic as usual.

On Saturday I went to the doctor. My usual doctor was sick so I saw another doctor. He did an ECG which was normal and ordered blood tests. He rang me tonight and told me that my Hb was 85 (pretty good for me) my WCC was low but mainly my lymphocytes were low. He also said that my ESR was high which means that I have an infection.

He is waiting for the results of my other blood tests and will ring me when he has them. I normally get low fevers and this hasn't gotten worse. I am hoping I haven't developed an infection on my heart valves, because this would explain why I had the "mini stroke" a few weeks ago.

I'm starting to get a little weary and am feeling a bit down at the moment. Sometimes this disease can be very hard to fight. I'm sorry to complain and I know you have all been through it but sometimes I just feel like giving up and staying in bed and let whatever is going to happen...happen.

I have just read through what I wrote and it sounds soooo whingey. I think I'll go and eat some chocolate, that fixes everything.


Bye
Chirley

Infection
 

Hi Chirley,
Good that your WBC:s seem to be OK :)! Did you ask for the count :confused:? I don´t think you have any infection in your heart. Everybody could feel week with your low HGB and an infection - probably an upper respiratory tract infection. Hope you get positive info from your doctor. I wish I could eat chocolate but I dare not because of my low platelets :(.
Kind regards
Birgitta-A

Chocolate lowers platelets? My platelets tend to run a tad high, so one more excuse to eat chocolate for me :D

Chirley,
I agree with Birgitta, it is likely you are feeling the effects of some normal infection more because your counts are off. I couldn't function at an 8. 9 is aweful for me.

Zoe

Chocolate lowers platelets?
 

Birgitta,

I'm surprised that you say chocolate lowers platelets. When I was recovering from ATG and later from my BMT, my magnesium was always low and chocolate was among the foods recommended because it contains magnesium. My platelets had always been the lowest of my counts and took the longest to recover, but no one ever mentioned that chocolate might be detrimental to platelets. Do you know of any research that relates chocolate and platelets?

Regards,
Ruth

Hi,

I am really lucky my platelets are normal because I love chocolate. When I first got sick I lost over 40 kgs. The dietition told me that I should eat chocolate and nuts. (along with boring things like meat and veges).

I credit the chocolate for helping to put weight back on. I have never heard that chocolate affects platelets.

I'm still waiting for the rest of my blood tests. My main problem at the moment is extreme tiredness, more than I've ever felt before. I'm finding that I don't want to get out of bed at all, this has never happened to me before.

Even when I had pneumonia in both lungs and heart failure, I always got out of bed and walked around with my oxygen on. After that I would sit in a chair when I got tired. The nurses and doctors were surprised that I could get out of bed.

I've had to take a couple of days off work because I didn't feel it was safe for me to drive . I wish I knew what is wrong.

I think i'll go and lie down for a while.

Chirley

Chocolate
 

Hi all,
You know I belong to 5 support groups - among them one for patients with immune thrombocytopenic purpura. That is a totally different disease but I have found that their warnings for green tea, blueberries, tomatoes, chocolate and so on are important for me. When I drink green tea or eat other kinds of food from their warning list I get pethechia round my eyes :( so I try to avoid everything on their list.
http://www.pdsa.org/itp-information/itp-warnings.html
Kind regards
Birgitta-A
latest platelet count 43

Sorry you not feeling well
 

Hello Chirley,

I am sorry that you are not feeling well. I have reviewed your blogs, and still have not seen a platelet or a hemoglobin count. When Pop's platelets started getting low, he would hit "plateau's". At these, he would have bouts of fatigue and would sleep. After a few days his body would adjust, and he would be good until the next drop.

Chirley, if you are a candidate for a transplant, please take the opportunity. My father was never able to have a transfusion, due to the complexity of his issue. As it was explained to me, bone marrow transplants are fairly quick, yes, there will be discomfort; however, the pat off would be not feeling like you do; furthermore, if you have sisters and brothers, there is more of an opportunity there.

I would also be curious about your red blood cell shape. Pop's went from a tear drop to a spear. This will make you extremely anemic, due to the loss of ability to exchange oxygen properly.

Keep us posted, and I will keep thinking of you. As far as the chocolate theory, well if that was the case, my wife would have no platelets left... ha, ha. I sure am brave when she is not around.

Write me.

Scott

Son of Bob

You have just described how I feel most days yet my doctors don't feel my symptoms are bad enough yet begin any treatment yet. I know I should be grateful to be alive, but my quality of life just sucks sometimes. I just take it One Day at a Time.

Hi,

I thought I would update you on my latest. I had another blood test this morning and received a phone call from the consultants secretary within 3 hours.

My Hb has dropped from 85, 6 days ago, to 72. My WCC is okay at 2.1 and my platelets are normal as usual at 215. Unfortunately my ESR is still high at 50. I have not developed any sign of infection but the ESR shows that I probably have an infection somewhere.

I have booked in for my regular transfusion for next Thursday which means my Hb will have dropped to 60 something by then. I have to wait until then because it is my next rostered day off work.

Thanks for the advice Birgitta but I think I'll be buying in a lot of chocolate and coffee to keep me going until my transfusion.

Bye Chirley ;)

Bone marrow
 

Hi Chirley,
You know our disease is called MDS because it is not really one disease but many different diseases. Syndrome refers to the association of several clinically recognizable symptoms.

I still think you should have more frequent transfusions – you know your heart does not like a HGB of 60 something :(. I have a “lower limit” of 95 though I had 70 when I got my dx and only felt shortness of breath in long staircases and steep hills.

Congratulation to your good platelet count and well functioning white blood cells :). Your bone marrow does not mind chocolate so you should of cause use chocolate to keep you going ;).
Kind regards
Birgitta-A

Lost my cool !!
 

Hi,

I have to admit to bad thoughts and foul language.

Last night I went to bed about 10pm, read my new book (Marley and Me) until about 11pm then decided it was time for sleep. After all, I have to get up at 4.30 am for work. I was just starting to drift off to sleep when the local council roadwork gang arrived and started ripping up the bitumen off the road in front of my house. They had 5 gravel trucks and a big machine that melts the bitumen then digs it up and shoots it into the back of the trucks. Every time a truck reversed into position I had the beep, beep, beep of the reversing alarm and all the vehicles had oscillating yellow alert lights. This went on until after I had left for work.

I will admit to going out into the middle of the road in my pyjamas and fluffy slippers at 2am and yelling obscenities at the workers. It didn't work, they kept on working any way. I gave up and jumped in my car, drove a couple of blocks away and tried to get some sleep by putting my seat down. It was very uncomfortable and a bit cold so at about 3.30 am I gave up, went home and made breakfast.

I am suspicious that they are coming back tonight to re lay the bitumen. I feel very embarrassed that I lost my cool last night but I think it would test the patience of a saint.

I am incredibly tired, Hb of 72 and about half an hour of very broken sleep and then a busy day at work. Back to work at 4.30 am again tomorrow.

AARRRGGHH :mad::o

Chirley

MDS and sleep
 

Hi Chirley,
How terrible with the local council roadwork gang distubing everyones sleep :mad:! You know that our immune system is repaired when we sleep so it is very important for all of us to have the possibility to get enough sleep every night. You can´t tell your doctor and the people at your work that it is dangerous for you to work full time with your disease?
Kind regards
Birgitta-A

They were working at 11pm in a residential area? Take a day off. You need it. Take care of yourself.

Zoe

Chirley~
Marley & Me is a great book, I'm sure you'll enjoy it. Everyone needs to blow off some steam now & then, & what better way than in fuzzy slippers!
Hope you get some rest soon!

Hi everyone,

I've been in hospital for a few days, had my 5 units of blood and had a blood stream infection treated. Now I feel great. Oddly enough I didn't get high fevers with the infection. Just my usual grumbling low grade one that I get every few days anyway.

The Department of Roadworks from the Council were very apologetic that my neighbours and I weren't notified about the roadworks. They phoned me twice just to make sure that everything was forgiven. They have come back and resurfaced the road with new bitumen (at night again) but I was in hospital so it wasn't a problem for me. This time they did leave a letter in the mailbox to advise us that the work was going to happen.

My doctor says that I cope with 5 units of blood so well that next time he is going to give me 6. Here I was hoping to have less blood more often and here he is increasing the amount of blood. The only good thing about all this is that the nursing staff and meal ladies etc know me very well now. They are just so lovely. The Nurse Unit Manager of the ward I go to tries very hard to make sure I get a private room. I have told her that I'm happy with whatever is available but she still gives me preference. The nutitionist that comes around with the menus always writes on my dinner menu that I can have a glass of wine. The nurses now trust me to keep an eye on my own imed drip machine and fix things if they beep. I only call them if they need to change a bag of fluid or antibiotics or blood has finished.

On a down note. I finished my book yesterday. I was not warned that the book Marley and Me would make me cry. I had just finished reading the book and was blubbering like a baby when my doctor walked in. Talk about embarrassing. When he found out it was the book making me cry he laughed at me. The book made me want to go home to my dogs so badly that I was up, showered, dressed and packed by 6am today and then my doctor was late. I was pacing around the ward annoying the nurses, so they rang him and asked him to come and discharge me. I rushed home and hugged my dogs, I think they were as happy to see me as I was to see them. Unfortunatley, I can't find my cat. My cat, Betty, has never been missing before and it's a bit of a worry. I hope she comes home soon.

Sorry to bore you with my story but I'm just really pleased to be home and feeling well.

Wishing the same for all of you.

Chirley

Blood stream infection successfully treated
 

Hi Chirley,
How wonderful that you already feel OK again after the blood stream infection and that you were very satisfied the treatment at the hospital :)!

Still I think you should have treatment for your low neutrophils like Neupogen because no one knows if you will get another infection with some agent that isn´t so easy to treat like the bacteria you had this time :confused:. Besides I am coming back to the issue that your doctor should give you blood more often and not more infrequent.
Kind regards
Birgitta-A
Neupogen 2 injections/week after neutropenic fever September 2007