Just getting started and scared to death

[Crystal R]

I recently got diagnosed with pancytopenia. I just happened to get the stomach virus and when it didn't go away after a week I went to the doctor. She ran the blood work and when it came back she sent me to the hematologist. He ran a cat scan on me and did blood work again. The cat scan came back clear but my blood work didn't change much. I am headed back next Friday to get my bone marrow done. I'm so scared but I'm trying really hard to stay positive. Today is a rough day, I have no appetite and have lost another pound. The unknown is so scary and all the possibilities of things that it could be are hard to wrap your head around. Honestly, I was beginning to think I was crazy. So, how painful is the bone marrow and does it take long to get results? Hope everyone has a great Thanksgiving!

[Neil Cuadra]

Crystal,

There's something going on with your blood counts, but there's little to be gained by worrying about all possible causes and all the possible outcomes. You'll know soon enough, and then you can arm yourself with information about the specific condition you are found to have. Let's hope it's something directly treatable.

If may be too soon to start learning about specific diseases, since you don't have a diagnosis, but it wouldn't hurt to learn more about blood counts and what happens when they are low.

Do you know the actual numbers from your CBC (complete blood count) tests? That would tell you whether they are just under the normal range or unusually low, and whether they are low enough that you might require a transfusion. You should start keeping copies of all of your test results, and CBCs are the easiest test results to understand.

Lab tests tell half the story. The other half is noticing whether you have symptoms of a low red cell count, a low white cell count, or a low platelet count (fatigue, headaches, frequent infections, bruising, red spots, etc.). Have you noticed such symptoms? Perhaps it's hard to tell while you're already under the weather with a virus, but if possible you'll want to tell the doctor if your low blood count condition is symptomatic or asymptomatic.

You'll find quite a few opinions about bone marrow biopsies in these forums. Just use the search page and you'll find people who says "it's nothing" as well as people who insist they need various types of pain medication.

[Tii]

Hi Crystal,

I was diagnosed with MDS last year and have had 4 bone marrow tests since. Two of them under anesthesia at the hospital. During the procedure you are asleep, you don't have to worry about any feeling pain. After the area is sore for two days. I have also done two BM tests wide awake, and the doctor just numbed the area really good and all you feel is pressure to the hip. It is not pleasant, I was shaking like a leaf before and after from nervousness, but during the test, you have to stay very still and its over sooner than you think. Having my sister with me was comforting and at the same time takes your attention elsewhere. The results come back usually in few days or a week later, depending if they do the tests at the same location or if the test will be sent elsewhere for results.

Don't stress yourself with the unknown or any outrageous possibilities. Don't google random websites, stay with highly recognized companies, hospitals or society websites. (UCLA, cedar sinai, Hopkins, american cancer association, mayo clinic). Positivity, staying active, determination, courage, patience, will take you far when faced with an illness. There are no stupid questions, so ask away! Support groups like this are beneficial when you think you are the only one with some side effect or symptom, and although we don't all have same diagnosis, we have been in your shoes emotionally.

All the best, happy Thanksgiving!

Tii 37 yrs, MDS & T-cell Leukemia (BMT 12/12)

[Crystal R]

Hi Neil!

I actually have kept both of my CBC reports, everything is right under the normal range. I have experienced some of the symptoms. My doctor actually put me on a B12 and iron pills for now.

You are right, not sense in worrying about it until I get a diagnosis then we can fix it.

Thanks so much for all you information!

Hi Tii,

Thank you for all your information, my husband will be going with me and I will be awake during the procedure, just some local anesthesia.

We must all be the same, reading all these websites and googling stupid stuff. I know that's what I have been doing anyways, but I will stop. You have very kind words and I thank you for that. I'm glad I signed up because no one understands unless they've been through it.

All the best to you too!

[Heather8773]

Crystal,

The unknown was one of the scaryiest parts for us. Bc once you know what your up against you know how to combat it. But I'll say that I made myself crazy in the mean time waiting for the answers. You'll get them after BMB/BMA. Please take peace in knowing you cannot solve this in a google search (but I'm happy it may have brought you here!) but as soon as you have the BMB/BMA (bone marrow biopsey and bone marrow aspirate) results you can move forward. And maybe forward will be that things are ok and you just have a good Dr who watches his Pts.
I hope the very best for you and pls let us know.
Ps tii and Neil very impressed by yalls answers and inspired by yalls compassion

[Cheryl C]

Hey Crystal - Like Tii I have had 4 BMB's and all were using local anaesthetic. If it hurts when they first start to penetrate the skin the local is either insufficient or hasn't been left long enough to take effect, so speak up. It will hurt a little bit when they get to bone and suck marrow out, because that can't be anaesthetised, but it's only very short term.

When your BMB/BMA results come through get back on Marrowforums and let us know your results if you are comfortable with that. There's a very good chance that several people on here will have experience in your problem areas. We are all here for you!

[Crystal R]

Thanks Heather and Cheryl, as soon as I know I will be sure to post. I hope I can find someone who's been through or is going through what I will be. I think the hardest part right now is not feeling like eating. I constantly feel like my stomach is full and the thought of food makes me want to vomit. The weight loss has been crazy too. I'm trying very hard to stay positive but it's so hard. I'm just hoping that with how advanced technology is that there will be something they can do to fix me.

Thank you all for your kind words and inspirations. I'm glad I found this site. Hope you all enjoy your Thanksgiving with your families.

[Crystal R]

Just got in the shower and noticed my first rash this is all becoming a reality, I was really hoping it was all just a bad dream. I now notice every little ache and pain, wondering if it's a symptom. I also forgot to mention that they found four fractured vertebrae in my back.
Next Friday can't come soon enough, I just need an answer.

Here's my levels as of November 15
WBC- 3.5
RBC- 3.76
Hemoglobin- 11.3
Hematocrit- 34.4
Platelet count- 120

I also have a benign cyst in my spleen. Trying to stay positive. Thank you all for your positive thoughts and saying!

[Mseth]

Hi Crystal,

My mother had her first BMB this year, she is 77 years, small and frail. Though we were very anxious about the pain & discomfort, it went off smoothly. She received a local anasthesia and was awake. A nurse held her hand throughout, we were not allowed in. She did feel pressure and discomfort during, but did not even need a painkiller post the procedure. It was performed at the outpatient department and the actual procedure takes only a few minutes. I hope this encourages you to be positive about the procedure.
Your counts are only marginally lower than normal. Hopefully everything will be fine.
All the Best!!

[DebS]

Crystal,

It is easy for us to tell you not to worry until you know something. But the truth is you have a long week of thinking and thinking about this. It is only natural that you would want to google everything and find out as much as you can about your situation. The advice to stay with reliable sites is so valuable. There is so much information out there that is outdated and very, very, grim. Believe me I know. When my husband was first diagnosed, I was searching night and day to try to find out something about this disease that I knew so little about. However, you do have to limit yourself. Either do this by time or task. Otherwise you will drive yourself absolutely crazy!

Please know that you have a wealth of information and support right here. As everyone has said, once you know more, come back and post. Then people can weigh in on your situation.

Meanwhile, do something uplifting for yourself. A movie comes to mind, because that would "take you away" from the situation for almost two hours. Talking to a friend would be good also.

Best of luck to you. God bless and keep as positive as you can.

Deb

[Crystal R]

Thank you Mseth for the information, I'm trying to stay as positive as can be.


Debs, thank you for the kind words and I can't wait to just get an answer and start my road to recovery. I plan on using this website and am so thankful that I found it. Everyone is so nice and it's nice to know you're not alone in a battle. As soon as I get my results I plan on posting them. God bless you and your family too! Thanks again

[Cheryl C]

Hi Crystal
Did you have your Vit B12 and D tested? Vit. D is important for platelets and low B12 can contribute to anaemia.

[Crystal R]

Hi Cheryl,
I know for sure he checked my b12, I am actually on that because it was on the low end of ok. As for my d I'm not sure. He also put me on iron which I'm not sure why because that came back ok.

[god's son]

Originally Posted by Crystal R

Just got in the shower and noticed my first rash this is all becoming a reality, I was really hoping it was all just a bad dream. I now notice every little ache and pain, wondering if it's a symptom. I also forgot to mention that they found four fractured vertebrae in my back.
Next Friday can't come soon enough, I just need an answer.

Here's my levels as of November 15
WBC- 3.5
RBC- 3.76
Hemoglobin- 11.3
Hematocrit- 34.4
Platelet count- 120

I also have a benign cyst in my spleen. Trying to stay positive. Thank you all for your positive thoughts and saying!

Krystal hi,
I have blood results very close to yours, and my both, personal and the specialist's doctors will play as "wait and see". My next appmnt. is 3 months from now. According to them I am stationary and there is nothing to worry about, (as right now) What I am doing right now is pray.
wbc 2.7...........down from 2.9 three months back
rbc 4.11 " " 4.40 "
hemoglobin 11.7 " " 12.6 "
hematocrit 34.5 " " 37.3 "
platelet 155 better " 128 "