Bone Marrow Biopsy 10-20% But NO ANSWERS!

[Alyssa W.]

Hi All,

I am new and am so excited to find a forum with like minded people. I have had a low white blood count for years and known I have to be very careful around sugar, washing hands, stress and other infections. But in general a healthy woman. I started to feel dizzy, nauseous, and weak for the past 5 months. My GP sent me to a hematologist who did a bone marrow biopsy. Wasn't sedated because my insurance wouldn't cover, but am happy to say it wasn't too bad.

Reviewing the results it reflected a hypo cellular marrow (10-20%) with decreased and maturing trilineage hematopoiesis. (say what?) No significant dysplasia and no increase in myeloblasts. No detection of abnormal cell populations (sounds good), nor genetic abnormalities recurrent in MDS. Clinical history of leukopenia, CBC showing neutropenia, anemia and mild thrombocytopenia, nutritional deficiency (e.g. B12 folate) less likely evolving aplastic anemia or hypo plastic myledoysplastic syndrome. Iron utilization defect (anemia of chronic disease) could be contributing to anemia.

What does this mean?

The doctor then said we will just monitor you every six months, live well, see you soon. WHAT? I have a little girl, I am weak, under weight, with an overall feeling of uneasiness. Many days I just want to stay in bed. I just got bronchitis and needed an IV then antibiotics. I feel so alone and unsure of where to go. If anyone here can shed some light on my darkness I would sure appreciate it.

Thank you from the bottom of my heart.

[Cheryl C]

Hi Alyssa - So sorry to read you're not feeling well. Your symptoms sound very like mine did 4 years ago before being diagnosed with MDS and after 6 years of chronic idiopathic neutropenia and lymphopenia as well as undiagnosed hypogammaglobulinaemia. A couple of questions:

Did you actually have your B12 checked? This is not quite clear in your post.
Are your globulin levels normal (IgG, IgA, IgM)? I haven't had to have IV antibiotics since being on 4-weekly gamma globulin and I rarely get any kind of infection now. Like you I also avoid sugar, practice strict hand-washing, etc.
How is your Vitamin D?
It's also worth having your copper level checked since you have a chronically low white cell count.

Others on this forum might have suggestions for further tests. Ask your GP if you can have them done, as if you're deficient this can contribute to the symptoms you are describing.

[Fana]

Hi
I am curious to know why are you guys avoiding suger? Does it have any effect on the blood count?

[Marlene]

I too wondered about your nutritional status. If I read your post correctly, it looks like you have nutritional issues. Do you know what the cause is?

What were/are your b12, folate, iron, D, zinc and copper levels. Any oral supplementation should be stopped 3 -4 days prior to testing. If you are getting b12 injections, it should be at least two weeks. These can falsely elevate blood serum levels.

In addition, they should check your MMA and homocysteine to get a better handle on the b12 status. A b12 serum test is the least accurate way to measure B12.

Are you on any medications?

[Faye R]

Hi Alyssa it must be hard a young mum and wondering what on earth is going on, Try not to stress too much hard to do easy to say I know. Nutrition is the best thing for early stages of blood disorders try to get that green stuff (Vegetables) into you as well as lots of fruit. I was great at this when first DX now not so good and I do feel the difference. Told hubby once my chemo is finished this week I'm back on my juicing again, the old saying you are what you eat, and I say if you can afford it, food can take a lot out of your budget. I take multi v.& m. everyday also when I'm not on chemo I have b12, haematologist order VD for me it is called Alfacalcidol have been taking this for years. I also get very tried, I work out what is important for me at the being of the day then use that energy wisely and have learnt to say no. O and I have learnt how to breath, if something hasn't gone as expected I say to myself breath Faye breath, for me it works. I also don't have sugar took that of the shopping list years and years ago, raw honey has replaced that.
DX 2008 RCMD 1% blasts DX 2014 16% blasts Vidaza started in 2014 last BMBT 2015 5% blasts Vidaza now up to 100mg

[Cheryl C]

Fana - Sugar compromises the immune system quite seriously. See http://alternativehealthatlanta.com/...immune-system/ I can easily get a sore throat if I eat foods with concentrated sugar, eg maple syrup, cane sugar products, rice malt, etc. Natural sugars like fruit are no problem at all. Honey is OK too, especially medihoney, which can be used to treat a sore throat or mouth ulcers.

[Cheryl C]

PS - Stevia is a good sweetener which for me doesn't have any bad side effects, and can be purchased as a power, liquid or tiny "tablets".

[Fana]

Wow that's news to me my son is post BMT almost a year he got a sore throat and a dry cough yesterday..I am cutting off his suger too

[Alyssa W.]

Gosh, I can't tell you what a relief it is to communicate with others who are going through similar issues. I felt so alone and really almost lost it a few nights ago. I am not sure what my B12, folate, Vitamin D, is, just that the Bone Marrow Biopsy said:
in the context of the clinical history of leukopenia (have had for 4years but dropped to 2.2), and the submitted CBC showing neutropenia, anemia, and mild thrombocytopenia, the differential diagnosis includes myelosuppression due to recent infection, drug effects (I'm not taking any), alcohol toxicity (I don't drink), a nutritional deficiencey (e.g. B12 folate) and less likely an evolving aplastic anemia or hypo plastic myelodyplastic syndrome.

I have had so many tests done but maybe none of the vitamin deficiency tests.

I just want to say I am so grateful to find you guys, I have felt so alone. Thank you thank you thank you! Any advice is always welcome. BTW sugar kicks my butt. I love gelato and frozen yogurt but I like feeling good better

Sending you all love, healing thoughts and peace.

[Alyssa W.]

Haha..this may be silly but it took me awhile to find my post. Is there a good way to find what we post? If anyone wants to email me I would be happy to communicate that way as well. Thank you!

[Neil Cuadra]

Originally Posted by Alyssa W.

Haha..this may be silly but it took me awhile to find my post. Is there a good way to find what we post?

Here are a few tricks you can use:

1. To find your own posts:

Click Quick Links at the top of any forum page. Select the choice My Profile. Your profile page will appear. Click the Find all posts by Alyssa W. link.

2. To be sent email anytime somebody posts in your thread (or any other specific thread):

Go to the thread in question. Click Thread Tools at the top of the page. Select the choice Subscribe to this Thread. The subscription screen will appear. Select Instant notification by email and click the Add Subscription button.

3. To arrange for this type of email for every thread you post in from now on (so you don't have to keep using trick #2):

Click My Settings at the top left of any forum page. Click Edit Options on the left. Set Default Thread Subscription Mode to Instant email notification. Click the Save Changes button at the bottom.

You can find more about this here in the FAQ.

[Marlene]

It's important to get copies of all your test so you can track trends. So ask them for copies. If your B12 is below 400, then it would be suspect even though it would be considered normal by most doctors. Optimizing nutritional status should be explored.

So please do follow up and find out what tests they have run. No one cares more about your health than you do.

[Alyssa W.]

Thanks Neil! I am set up to see if anyone replies. I really appreciate it.

Thanks Marlene, I will get copies of my tests and see if I can start tracking trends. I haven't gotten any mineral or vitamin blood tests so I will have to go in and request that. I have been taking just recently, probiotics (because I was on antibiotics for bronchitis and is still lingering), vitamin D 5000IU, Vitamin C, MultiVitamin, Zinc 25mg, MSM, Iron, and Fish Oil.

I am trying so hard to be positive but after so many months of feeling weak and uneasy it is breaking me down. I know God has a plan for me and being sick makes you stronger (mentally) but gosh I feel I discouraged. I know others are way worse than me and I feel selfish for thinking one thought of being sorry for myself. Just don't want to do much any more and want to be a good mom and friend and person for this world. I do appreciate you all and hope you are well and happy.

[Cheryl C]

Hi Marlene - just posted to Tracey and will share with you what a chinese haematologist told me when I was first diagnosed with MDS, and that is to take 1000 mg Echinacea a day to boost the immune system. (He recommended against taking any chinese medicines). Maybe it could help you? St. Johns Wort is also good for your mood, as long as it doesn't clash with any other medication you might be taking.

[Marlene]

Thanks for the tip Cheryl. Fortunately, John's immune system is good at this point. Very rarely does he catch a cold.. Even when his ANC was at 1.0.

The lung infection was when he was in the hospital during treatment and hasn't had any lung infections since. (better find some wood to knock on .

[Cheryl C]

Sorry Marlene - my message above should have been directed to Alyssa.

[Alyssa W.]

Hi Cheryl,

Thank you for the recommendation. I was advised to try astragalus root and have started trying that. I have been taking 40mg of zinc, iron, MSM, vitamin C, D, and fish oil to see if that will help. I have been feeling better today, but I seem to have good days and bad days. Have you recovered or do you still have symptoms? Is this a life time issue? I hit a wall last night and was really down. I feel mentally drained because I feel I have tried everything from eating healthy to walking to trying to eliminate stress. I know people have way worse things going on but being weak and scared can be tiring. I hope all of you find good answers and heal. Much love. A

[Cheryl C]

You know, Alyssa, I was trying to think of the word "astragalus" when I sent that last post. Yes, that's another really effective natural immune booster.

Regarding weakness, I do still get that sometimes and I usually try to go for a walk which probably sounds ridiculous, but for me actually relieves that "jelly legs" feeling. Regular exercise is very important when you have a marrow disease.

No I haven't recovered from MDS. That's impossible in human terms without a successful transplant, but now that my condition is stable and there's no evidence of blasts in my peripheral blood, the risks of transplant outweigh the benefits. For me vigilance is the name of the game! I have a 4-weekly pathology test.

Hypogammaglobulinaemia is also a life sentence but in a funny way I'm grateful for it because I get to have gamma globulin every 4 weeks and I'm sure it's helped my immune system enormously. Don't forget to get your globulin levels checked!

[Alyssa W.]

Hi,

How is everyone? Still fighting off a cold that I got from my daughter 3 weeks ago. Still trying to build my immunity and wondered if there was a way to increase WBC and Cells naturally? Eating lots of Veggies, meats, no sugar, and trying not to stress. taking b12, vitamin D5000iu, and zinc. I get scared sometimes because when i get sick I feel it really wipes me out, when my cold was at it's worst, I thought my body was so lifeless that it could take me over. I don't want to be a germ-a-phobe and want to be a good mom for my 8 year old daughter. She wants me to play, kiss me, have fun and sometimes my energy is so low I feel there is a magnet on my back pulling me to my bed/sofa. Anyone relate? I am seeing an Internist this Friday and wanted to see if there are any questions you may think of to ask him? Thank you friends and hope each of you are well and on the way to perfect health. xo

[Alyssa W.]

Also, my hands and feet have been tingly lately. Almost as if the blood is not circulating to them properly. I massage them and move them but have been tingly. Any suggestions? Thanks!