Low T-Cell - Bone Marrow Biopsy

Posted by mariabrat @mariabrat, Mar 16 9:57am

Hi,

I am 31 year old and just had a bone marrow biopsy. After 4 months of tests : MRI (Brain, Abdomen), CT Scan (Thorax, Throat) and very detailed blood test at the hematologist including autoimmune disease, HIV, tropical diseases, viruses nothing was found.

The only symptoms I have is slightly enlarged spleen, on and off chest and throat discomfort/cough, extreme tiredness in the morning. One day I feel fine, one day I don't feel great. It feels like "something is getting activated" except the tiredness remain constant.

Since the T-Cell are extremely low but everything else is perfectly fine (pallets, red blood cells, immunoglobulin, protein levels) they are not "TOO" worried about cancer but they still wanted to rule it out with a bone marrow examination. I am extremely worried and I can't sleep, thinking I might have cancer.

If you have any opinions, advices or tips, I would highly appreciated.

Maria

Hi Lori,

The good news is that I got a Covid vaccine yesterday (yaaah!) but we are not sure how it would work since my T-Cell are really low. I have been feeling pretty sick because of it but its definitely better to have it.

The genetic testing haven’t find anything so far and Im still waiting for the bone marrow. I have heard that usually in one week they get some results and the other half the week after – Do you know what are they? I haven’t heard anything so far but I have a follow up with him on April 6th (3 weeks after the bone marrow) but Im wondering if he would call earlier.

How is everything on your end :)?

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@mariabrat

Hi Lori,

The good news is that I got a Covid vaccine yesterday (yaaah!) but we are not sure how it would work since my T-Cell are really low. I have been feeling pretty sick because of it but its definitely better to have it.

The genetic testing haven’t find anything so far and Im still waiting for the bone marrow. I have heard that usually in one week they get some results and the other half the week after – Do you know what are they? I haven’t heard anything so far but I have a follow up with him on April 6th (3 weeks after the bone marrow) but Im wondering if he would call earlier.

How is everything on your end :)?

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@mariabrat Hi Maria, Congratulations on getting the vaccine. It’s a step in the right direction for sure. I’m also immunocompromised but it was still highly recommended by my transplant team to get the vaccine. Even limited protection is better than none. It will prime our immune systems to recognize the virus if we are exposed.

I’m all too familiar with bone marrow biopsies. I’ve had over 10 in the last 2 years. A full bone marrow exam takes several days and up to 2 weeks with genetic testing. There are an incredible amount of tests run on the core sample and peripheral blood collected during the biopsy so it can take quite a bit of time to process everything, interpret the results and then return the results to your physician. Then your doctor will have to review the findings before sitting down with you at your appointment. I know all of this takes time and is so frustrating.

The biopsy of your actual bone marrow will allow the lab technicians to examine the cells in great detail and do the genetic testing. In my case, I have/had Acute Myeloid Leukemia (AML~in remission now after a bone marrow transplant) There was no doubt before my bone marrow biopsy exam (BMBX) that I had leukemia. My initial BMX was to see if I had any genetic mutations which would complicate the treatment for my AML. My subsequent biopsies during my cancer treatments checked the progress to show there was remission. After Transplant, biopsies are done to make sure the leukemia is gone and to make sure my DNA still is 100% my donor and 0% my DNA with a chimera test. So you can see, there are many reasons for a bone marrow biopsy.

In your case, your symptoms and tests so far haven’t been able to pinpoint a cause for your low lymphocyte count. So the BMX is being done to investigate at the source of blood cell production…the bone marrow. With low white counts, it can be as simple as your body reacting to something it feels is invading, such as a virus. But when there is no direct answer, the BMX is the best place to begin a more in-depth look-see. We’ll be optimist for the best possible outcome.

What are you doing in the meantime to occupy yourself? It’s finally spring here, so it’s been so wonderful to hear all the birds, see people out in their yards working again and walking around the neighborhood to say hi after being in hibernation all winter. LOL. My husband and I go out walking twice a day for several miles but usually we see no one. So it’s fun to have some interaction again with friends and neighbors. Still at a distance, however. I hope you’re having a great day! Lori.

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Thanks for your answer! Indeed that’s what the doctor explained that they are not too worried but want to make sure there are no hidden lymphoma or malignancy. Im wondering what they can test for or what type of disease / cancer they could find….Ive read that there is a pre-leukemia condition that can cause low Lymphocytes only. I feel like if they haven’t call me yet its probably a good sign as its been 10 days, but maybe not lets see.

Im very glad about the vaccination indeed, I feel lucky. Ive been trying to go out for walks, museums are open too, but I still feel like a strangers between my friends. Nevertheless everyone have been really nice and work as well so I can’t complain. Oh and I tried headspace, its awesome, we have it free at work and its great, thanks for the tips. Ive also watched the videos you recommended and it helped with the positive thoughts, I didn’t know him before actually. I hope you are doing all fine and can enjoy normal life slowly? Ive heard things are pretty normal in the US.

My partner was traveling for a month and finally coming back next week, so Im looking forward to have him back even tho I think he would have loved to stay in spain under the sun. I was thinking that If ever there would be nothing in the bone marrow I will go for a vacation with my partner, or something like that to enjoy life and celebrate my birthday.

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@mariabrat

Thanks for your answer! Indeed that’s what the doctor explained that they are not too worried but want to make sure there are no hidden lymphoma or malignancy. Im wondering what they can test for or what type of disease / cancer they could find….Ive read that there is a pre-leukemia condition that can cause low Lymphocytes only. I feel like if they haven’t call me yet its probably a good sign as its been 10 days, but maybe not lets see.

Im very glad about the vaccination indeed, I feel lucky. Ive been trying to go out for walks, museums are open too, but I still feel like a strangers between my friends. Nevertheless everyone have been really nice and work as well so I can’t complain. Oh and I tried headspace, its awesome, we have it free at work and its great, thanks for the tips. Ive also watched the videos you recommended and it helped with the positive thoughts, I didn’t know him before actually. I hope you are doing all fine and can enjoy normal life slowly? Ive heard things are pretty normal in the US.

My partner was traveling for a month and finally coming back next week, so Im looking forward to have him back even tho I think he would have loved to stay in spain under the sun. I was thinking that If ever there would be nothing in the bone marrow I will go for a vacation with my partner, or something like that to enjoy life and celebrate my birthday.

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@mariabrat Hi Maria, Aw, a vacation with your partner would do you a world of good! Especially after the stress of the past few weeks. I’m so happy for you that he’ll be back soon and have his companionship again. Spain sounds heavenly with the wonderful sunshine! But even a low-key weekend or a mini vacation would be great for a change of view. Celebrate life every day! When is your birthday?

I know Covid is making everything way more complicated and impacting the way we travel. The US isn’t back to normal…or shouldn’t be! We are grateful that most people are now getting vaccinated and there’s no shortage of vaccines. But the virus is far from under control and many of us are concerned that people will get careless again. Very frustrating.

Unfortunately, because of all the chromosome analyses, and other aspects of a BMX it can take that full two weeks to complete. Sometimes the biopsies are sent out to another laboratory if specialized equipment is needed.
I know you have an appointment in a couple weeks, but you could simply try calling your doctor’s office to see if the results are back and what they are.

I’m really happy the meditative ideas have been working for you! We’re the worst for getting into our own heads with negative self talk! So it’s great when there are positive people who can plant new thoughts inside.

Wishing you a delightful weekend! Lori

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I just called and the receptionist told me not all the results are in and that I have anyway an appointment next week. I tried to ask if the results are OK but she said that we can't say now as we don't have it all so I feel like there might be something bad? I should not have call now I am going even more crazy.

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@mariabrat

I just called and the receptionist told me not all the results are in and that I have anyway an appointment next week. I tried to ask if the results are OK but she said that we can't say now as we don't have it all so I feel like there might be something bad? I should not have call now I am going even more crazy.

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@mariabrat Nope nope…don’t go there with your thoughts! Honestly, the receptionist’s reply is pretty standard. There wouldn’t be much she’s allowed to tell. It’s frustrating and nerve-wracking to wait for answers, I know! I’ve been there! The results may not all be back yet. From experience, there are so many aspects to a BMX, some take longer than others if sent out to be analyzed at an off-site lab.
Because of the detailed reports your doctor may simply want to sit down with you and take the time to explain the findings. If you got a brief answer over the phone that says, “ The biopsy is clear, we have no idea what’s wrong with you. Good bye”, that would be a very unsatisfactory experience and leave you helpless. Waiting until the appointment, you’ll be able to sit with your doctor, listen to the results and either way, have to find an approach going forward. Does that make sense? All of that would be very difficult just with a phone call.
So, my dear, no fretting this week!! The fact that nothing has jumped out in any of the tests so far is a good sign. So keep practicing the positive affirmations daily, take those walks and keep your head clear! I have a deep breathing exercise that works for stress.

The technique is called 4-7-8 Breathing, and it has five easy steps: Place the tip of your tongue on the roof of your mouth, right behind your front teeth. Breathe in through your nose for a count of 4. Hold your breath for a count of 7. Release your breath from your mouth with a whooshing sound for a count of 8.

Isn’t your significant other coming home this week?? That’s awesome. Something truly to look forward to! Hugs, Lori.

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@loribmt

@mariabrat Nope nope…don’t go there with your thoughts! Honestly, the receptionist’s reply is pretty standard. There wouldn’t be much she’s allowed to tell. It’s frustrating and nerve-wracking to wait for answers, I know! I’ve been there! The results may not all be back yet. From experience, there are so many aspects to a BMX, some take longer than others if sent out to be analyzed at an off-site lab.
Because of the detailed reports your doctor may simply want to sit down with you and take the time to explain the findings. If you got a brief answer over the phone that says, “ The biopsy is clear, we have no idea what’s wrong with you. Good bye”, that would be a very unsatisfactory experience and leave you helpless. Waiting until the appointment, you’ll be able to sit with your doctor, listen to the results and either way, have to find an approach going forward. Does that make sense? All of that would be very difficult just with a phone call.
So, my dear, no fretting this week!! The fact that nothing has jumped out in any of the tests so far is a good sign. So keep practicing the positive affirmations daily, take those walks and keep your head clear! I have a deep breathing exercise that works for stress.

The technique is called 4-7-8 Breathing, and it has five easy steps: Place the tip of your tongue on the roof of your mouth, right behind your front teeth. Breathe in through your nose for a count of 4. Hold your breath for a count of 7. Release your breath from your mouth with a whooshing sound for a count of 8.

Isn’t your significant other coming home this week?? That’s awesome. Something truly to look forward to! Hugs, Lori.

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You always seem to have the right words 🙂 ! I am used to the fact that doctors call when it is bad so I am fearing a call before next Tuesday, which I really do not want. I am supposed to see my partner on Thursday, so I would love to have a nice weekend together for my birthday before the doctor appointment.

I have been feeling sick this week so its been hard to think about something else – Maybe the vaccine did not help? My symptoms are really odds – swollen and slightly painful saliva glands, stomach/throat inflammation, cough, no appetite and feeling lethargic. Sometime I am thinking or wishing that its something autoimmune or a bacterial infection but it wouldn't decrease my lymphocyte from so much…Now I remember that my ANA test was positive but no autoimmune found…I am annoyed and thinking all over again what it could be.

How is your week going? I hope you are having great weather as here in Germany its amazing!

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@mariabrat I live in northern Wisconsin in the US. Right now our high for the day was 42 degrees. We had 60 yesterday for a little teaser of nice weather! This next weekend it is supposed to be in the 70s. So I think we’re going to be having your weather. My friend who lives in Gera, north of you in Germany, said it’s been just gorgeous, We’re jealous. LOL

I’m not sure I always have the right words, but thank you for that. I’m just sad you’re not feeling well and it’s taking so long to get answers with a solution for you. Our bodies are amazingly complex and unfortunately didn’t come with an owner’s manual. Though we live in an age of phenomenal discoveries and treatments, it isn’t always easy to diagnose what’s going on. You mentioned your ANA was positive but no autoimmune disease. There are different aspects to that test as well, so maybe combined with the results of your BMX there will be some answers for you. All these test show me your doctors have your back on this! I don’t think you’ll get a call ahead of your appointment. 😊

It’s perfectly human/normal to speculate and have the ‘What IF’ thoughts but they can be so mentally and physically draining. Plus having to go through this period of uncertainty alone has to be affecting you too. It’s easy to become depressed when you feel a little hopeless.
May I ask what is your worst fear? It is so natural to always fear the worst! I know we talked about that earlier. You were sad about potentially missing out on activities and such if you are ill and had to go through treatments. Think about it this way, it would be a small price to pay to miss a few months or however long to possibly cure you for a lifetime.
My leukemia and subsequent bone marrow transplant took the better part of a year. 4 months of that my husband and I had to take up temporary residence in Rochester, Minnesota. My transplant was at Mayo Clinic and I was required to be near the clinic for 100 days. That went by so quickly. And now, if I make it to 24 months (AND I WILL) my transplant doctor tells me statistically my cancer won’t return and it was all a success. I’m at 21 months and my latest BMX in January was still clear. Would I do it all over again? Yes!! I’d gladly sacrifice a year out of my life to insure another 20+. (I’m 67). Sometimes what we fear most in our heads isn’t the worst case scenario at all.

I truly hope you feel better this week so that you can spend some enjoyable time with your partner. But you know, you’ve been apart for a month I think? Even just some quiet snuggle time, watching movies or a little stroll at this point will be good medicine for you. I wish I could give you a big hug, because you sound like you need one. Call your mom. 😘 Wishing you peace…Lori.
P.S. Happy Birthday!! 🎂🎁🎈

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@loribmt

@mariabrat I live in northern Wisconsin in the US. Right now our high for the day was 42 degrees. We had 60 yesterday for a little teaser of nice weather! This next weekend it is supposed to be in the 70s. So I think we’re going to be having your weather. My friend who lives in Gera, north of you in Germany, said it’s been just gorgeous, We’re jealous. LOL

I’m not sure I always have the right words, but thank you for that. I’m just sad you’re not feeling well and it’s taking so long to get answers with a solution for you. Our bodies are amazingly complex and unfortunately didn’t come with an owner’s manual. Though we live in an age of phenomenal discoveries and treatments, it isn’t always easy to diagnose what’s going on. You mentioned your ANA was positive but no autoimmune disease. There are different aspects to that test as well, so maybe combined with the results of your BMX there will be some answers for you. All these test show me your doctors have your back on this! I don’t think you’ll get a call ahead of your appointment. 😊

It’s perfectly human/normal to speculate and have the ‘What IF’ thoughts but they can be so mentally and physically draining. Plus having to go through this period of uncertainty alone has to be affecting you too. It’s easy to become depressed when you feel a little hopeless.
May I ask what is your worst fear? It is so natural to always fear the worst! I know we talked about that earlier. You were sad about potentially missing out on activities and such if you are ill and had to go through treatments. Think about it this way, it would be a small price to pay to miss a few months or however long to possibly cure you for a lifetime.
My leukemia and subsequent bone marrow transplant took the better part of a year. 4 months of that my husband and I had to take up temporary residence in Rochester, Minnesota. My transplant was at Mayo Clinic and I was required to be near the clinic for 100 days. That went by so quickly. And now, if I make it to 24 months (AND I WILL) my transplant doctor tells me statistically my cancer won’t return and it was all a success. I’m at 21 months and my latest BMX in January was still clear. Would I do it all over again? Yes!! I’d gladly sacrifice a year out of my life to insure another 20+. (I’m 67). Sometimes what we fear most in our heads isn’t the worst case scenario at all.

I truly hope you feel better this week so that you can spend some enjoyable time with your partner. But you know, you’ve been apart for a month I think? Even just some quiet snuggle time, watching movies or a little stroll at this point will be good medicine for you. I wish I could give you a big hug, because you sound like you need one. Call your mom. 😘 Wishing you peace…Lori.
P.S. Happy Birthday!! 🎂🎁🎈

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Oh wow, sounds like a nice weekend ahead. We don't use fahrenheit here so I am getting all confused, great that you can enjoy the nice weather 😀

I am very glad I am currently in Germany and having great doctors, it just took a while to find him. I was living in Asia previously and I am very happy to be in Europe for this kind of issue. I am just very frustrated as it has been going on for almost half a year now.

You will definitely make it to 24 months, its really nice to hear – I like the attitude. It should not have been easy, but I am sure now you are full of positivity about life. What were you the most scared of when you learned about your blood cancer? I think my biggest fears is to be without my mom/dad/sibling in Germany (I do not speak the language which is extremely annoying, need a work visa etc.), loosing my partner and thinking what it could have been without it, missing out on "time" and moments. At 30 year old, I do not know anyone who is sick around me…I feel like an alien where people just enjoy their life, party, think they are invincible.

Thank you so much for the birthday wishes :), I will try to enjoy the weather, parks, having nice coffee…It will be nice after a month indeed. I am thinking to go see an HNO tomorrow for the swollen saliva glands/no appetite but I am scared they won't be able to help me out unfortunately…

Enjoy a lot the nice weather next weekend, and thank you again for the support, its always nice to read you.

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@mariabrat

Oh wow, sounds like a nice weekend ahead. We don't use fahrenheit here so I am getting all confused, great that you can enjoy the nice weather 😀

I am very glad I am currently in Germany and having great doctors, it just took a while to find him. I was living in Asia previously and I am very happy to be in Europe for this kind of issue. I am just very frustrated as it has been going on for almost half a year now.

You will definitely make it to 24 months, its really nice to hear – I like the attitude. It should not have been easy, but I am sure now you are full of positivity about life. What were you the most scared of when you learned about your blood cancer? I think my biggest fears is to be without my mom/dad/sibling in Germany (I do not speak the language which is extremely annoying, need a work visa etc.), loosing my partner and thinking what it could have been without it, missing out on "time" and moments. At 30 year old, I do not know anyone who is sick around me…I feel like an alien where people just enjoy their life, party, think they are invincible.

Thank you so much for the birthday wishes :), I will try to enjoy the weather, parks, having nice coffee…It will be nice after a month indeed. I am thinking to go see an HNO tomorrow for the swollen saliva glands/no appetite but I am scared they won't be able to help me out unfortunately…

Enjoy a lot the nice weather next weekend, and thank you again for the support, its always nice to read you.

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@mariabrat
Ooops, I forgot to change the temp to C. Yes, 70 degrees C would be a bit steamy at 158 degrees!! Looking forward to spring sunshine warming things up here, but not that much!! Yikes! 🙂

I’m just trying to absorb all of what you’ve gone through to this point in your life. You’re only 30, moved to a foreign country where there is a language barrier, and you’re far removed from your family. When’s the last time you were home or saw your family?
I can only imagine how incredibly difficult this is for you, feeling like you’re alone in facing a potential health scare. It would be challenging in the best of times.

I really hope your partner can help reassure you that he’ll still be in the picture no matter what! With him having been gone for a month, it really provides too much idle time to think about those pesky “what ifs” and he hasn’t even had the chance to prove himself worthy. 😉

My daughter is 37 and these talks with you are very similar to how she and I would be sitting side by side, having our heart to hearts. So when you asked what my fears were when first diagnosed she was the first thing that came to mind, along with my husband. We’re very close and I imagined the void it would leave if I didn’t survive. (And the mess I left behind in my sewing room!!…at least my underwear draw was cleaned! LOL)
I was scared to run out of time and how it would impact their lives. My daughter is married and lives 5 hours from us. When I was admitted to the hospital for 5 weeks she came home to be with her dad. She and I had very pragmatic, beneficial and open discussions about the future. It put both of us in a better place mentally. I felt reassured that she’d be ok and I was prepared for any eventuality…though failure was not an option. 🙂

Being ill when you’re older is a bit different than facing something difficult when you’re younger. I lived a long, full, happy, heathy life. But even so, I still felt robbed. At 30, your entire life is ahead of you. And it is so normal to feel invincible at that age! So, no wonder you feel cheated or robbed of this time…this past year of feeling awful with no diagnosis as to what’s going on.
All of your concerns about missing out on “time” and moments is totally valid! I felt and still feel resentful sometimes when I see families around me carrying on like there’s no pandemic while I’ll have to be cautious the rest of my life. It doesn’t seem fair. But sometimes it’s the hand we’re dealt. And at this point, having gone to heck and back, I’m just grateful to be alive and happy! My life is full again, just in different ways. So I let those other emotions roll off my back. Their life is not my life.

I’m so glad you finally found a doctor whom you can trust going forward. The fact that you’re being taken seriously, with testing and follow-up tells me you found the right clinician. So let’s stick with that plan on keeping positive and being upbeat. I think you’ll feel at least some emotional relief tomorrow when you get an actual hug! But as a caution, continue the Covid protocol. you’ve only had one Covid vaccine shot and a lower white blood count. Just sayin’. ☺️

All the best, Lori.

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@mariabrat Just popping in to say Hi and to let you know you’re on my mind. I truly hope you had a delighful weekend reuniting with your significant other and are having some better days health-wise. Wishing you all the best this week. Lori.

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@loribmt

@mariabrat Just popping in to say Hi and to let you know you’re on my mind. I truly hope you had a delighful weekend reuniting with your significant other and are having some better days health-wise. Wishing you all the best this week. Lori.

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Wow thank you so much! I had an amazing weekend, full of surprises and literally no time for bad thoughts. My partner organized a surprise with my friends in a park and all of them had to get covid tested before. Great coffee, brunch, cakes, talks, games, wine, gifts, videos montages and so on 🙂 It was really great! Probably the best birthday I could have imagine in a covid time…I surprisingly felt quite good as well which is perfect.

I had some bad thoughts tonight for the appointment tomorrow but hopefully its a good sign that I haven’t heard back yet from the doctor?! I will write you tomorrow as Im off to bed.

How was your Easter? I hope you manage to enjoy the weather and some chocolate;)

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