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

@mariabrat

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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@mariabrat This is such an uplifting message from you!! You’ve brought the biggest smile to my face and heart! I couldn’t have wished for sweeter news hearing that you’re feeling so much better and that you had an amazing weekend. You were due for this reward after the horrid past month!
Aw, your partner sounds like a keeper! What a fun weekend of fun and celebration for you birthday!! And obviously this event took quite a bit of planning and covert ops. Giggle. Are you feeling more secure in your partnership now? Being new in a relationship and then having to be apart for a month gives the mind way too much time to play with doubts and insecurities. Someone having your back is uber important so I do hope you feel that way with your partner now. Gives me the warm fuzzies!! ☺️

And of course, I pray for the very best outcome to your appointment today! With our time difference you may already be there. Big hug as you go forth! Lori.

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Hi @loribmt 🙂

My partner was really sweet indeed (definitely a keeper). There is "no guarantee" that my partner will stay but at this point of time he is here and supporting, so I guess its good. His vision of life is "lets not think about the future since nobody know how they'll react anyway, so that would be lie to guarantee that I will be there forever". That's not really what I want to hear but I guess that this is the reality?! He also does not believe in wedding for the exact same reason…Its a little annoying but pretty realistic.

On another note. I am having the BEST NEWS to share with you!!! I went to by appointment and there is NO cancer in the bone marrow, no hidden lymphoma or leukemia, I am SO relief. I almost cried in the doctor office. There is a decrease of T-Cell produced in the bone marrow which seem either to be a deficiency or an autoimmune reaction. The doctor suggested to see a Rheumatologist which might take a few months.

So still a mystery but at least with a full body MRI / CT Scan and so many blood tests and bone marrow biopsy I guess its pretty safe to say that I most likely do not have something TOO serious? I am thinking to go to the beach for a week to celebrate life.

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@mariabrat

Hi @loribmt 🙂

My partner was really sweet indeed (definitely a keeper). There is "no guarantee" that my partner will stay but at this point of time he is here and supporting, so I guess its good. His vision of life is "lets not think about the future since nobody know how they'll react anyway, so that would be lie to guarantee that I will be there forever". That's not really what I want to hear but I guess that this is the reality?! He also does not believe in wedding for the exact same reason…Its a little annoying but pretty realistic.

On another note. I am having the BEST NEWS to share with you!!! I went to by appointment and there is NO cancer in the bone marrow, no hidden lymphoma or leukemia, I am SO relief. I almost cried in the doctor office. There is a decrease of T-Cell produced in the bone marrow which seem either to be a deficiency or an autoimmune reaction. The doctor suggested to see a Rheumatologist which might take a few months.

So still a mystery but at least with a full body MRI / CT Scan and so many blood tests and bone marrow biopsy I guess its pretty safe to say that I most likely do not have something TOO serious? I am thinking to go to the beach for a week to celebrate life.

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@mariabrat I have tears of joy for you, sweet girl! What a relief that you got such positive news! Even though you still have some unresolved symptoms you can indeed put the worst thoughts behind you! 💕
As for your boyfriend…giggle…I see someone immature and afraid of commitment. But he sounds like fun in the meantime~until either of you decide what your futures holds with a life partner.
For you, life is a celebration to be met with joy daily! Embrace it to the fullest.
Will you check back from time to time? I’d love to follow your story. And, I feel you have great insights with your experiences to help others. Big hug and all the best! Lori.

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@loribmt awww this is so sweet from
you! You have been a beautiful help during this period, really. I am super grateful for great person like you are. Of course I am happy to keep in touch anytime 🙂 I will get an appointment in a few months time but for now, celebrating life is important….And for my partner we will see how this develop. Im a bit old fashioned with this idea of being there for each other whatever. It seems a little hard these days ;P

Again, big hug 🥰

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@mariabrat Hi! It’s been a few weeks so I just wanted to touch base to see how you’re doing.
Are you feeling any better? The past months have been really mentally exhausting for you so I hope that you’re growing stronger and improving each day.

As you’ve said, “Celebrating life is important!” What have you been doing this month to keep your spirits energized? I spend time with Mother Nature. LOL. She keeps me entertained with all the wildlife, flowers, trees budding… Today, I see we’re getting an addition built onto our house! A robin is building a nest right next to our back door on the light! ! I’m sure we’ll be dive-bombed every time we step outside. Oh well, babies will be fun to watch!

Take care…sending positive vibes ‘across the pond’ Lori

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@loribmt

@mariabrat Hi! It’s been a few weeks so I just wanted to touch base to see how you’re doing.
Are you feeling any better? The past months have been really mentally exhausting for you so I hope that you’re growing stronger and improving each day.

As you’ve said, “Celebrating life is important!” What have you been doing this month to keep your spirits energized? I spend time with Mother Nature. LOL. She keeps me entertained with all the wildlife, flowers, trees budding… Today, I see we’re getting an addition built onto our house! A robin is building a nest right next to our back door on the light! ! I’m sure we’ll be dive-bombed every time we step outside. Oh well, babies will be fun to watch!

Take care…sending positive vibes ‘across the pond’ Lori

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Hi Lori! 🙂 It is so refreshing to hear from you!! How have you been doing? I am so glad you're spending time outside and it is so cute that you're getting some company 🙂 Do you have a lot of nature/parks around your area? How is your health?

I wish I had some awesome news for you! Well, I do not have really bad news either, but I'm unfortunately not getting any better. I am having a bunch of weird symptoms from the tongue, stomach, & neck glands soreness, cough & no appetite. The full exome sequencing didn't reveal any diseases. I am not sure how familiar you are which those scientific terms 😉 but it means that there is still 2% of the DNA that is not covered in this test. To get 100% we need full Genome testing which is not covered by the insurance. My doctor is trying to get special approval from the genesis department yayy (crossing fingers). In the meantime, I went to see a rheumatologist but they are clueless. I did some additional autoimmune blood test (still waiting) and sonography of the neck which doesn't show swollen lymph nodes. I also went for an allergy test out of desperation LOL. It seems like there something "consuming" or not producing my T-Cell in the bone marrow and I am much desperate on what to do next. Could it be that this gastroscopy or MRI missed something? Could this still be cancer? This is still in my head.

My partner had to fly out of Germany because his best friend was given 1-3 months to live. After only a few days she died while they were asleep in the same room. It's crazy because last October she was fine. I believe she had a wrong diagnosis initially (she is living in Serbia) and things progressed super fast. My partner is away for another month to process this with the family there so it's a bit of a rough time. It is so sad to see someone so young die like this. I am trying to give space and take care of myself. Hopefully, in June we can take a month somewhere by the beach and do nothing but enjoy life.

In the meantime, I am trying to remain positive, I have to admit that I feel like I am lacking resources…But hey, I didn't want to sounds too negative here. I am still enjoying those walks with friends, exploring new coffee shops, reading and watching more, and try to focus on work and personal development. 🥰

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@mariabrat

Hi Lori! 🙂 It is so refreshing to hear from you!! How have you been doing? I am so glad you're spending time outside and it is so cute that you're getting some company 🙂 Do you have a lot of nature/parks around your area? How is your health?

I wish I had some awesome news for you! Well, I do not have really bad news either, but I'm unfortunately not getting any better. I am having a bunch of weird symptoms from the tongue, stomach, & neck glands soreness, cough & no appetite. The full exome sequencing didn't reveal any diseases. I am not sure how familiar you are which those scientific terms 😉 but it means that there is still 2% of the DNA that is not covered in this test. To get 100% we need full Genome testing which is not covered by the insurance. My doctor is trying to get special approval from the genesis department yayy (crossing fingers). In the meantime, I went to see a rheumatologist but they are clueless. I did some additional autoimmune blood test (still waiting) and sonography of the neck which doesn't show swollen lymph nodes. I also went for an allergy test out of desperation LOL. It seems like there something "consuming" or not producing my T-Cell in the bone marrow and I am much desperate on what to do next. Could it be that this gastroscopy or MRI missed something? Could this still be cancer? This is still in my head.

My partner had to fly out of Germany because his best friend was given 1-3 months to live. After only a few days she died while they were asleep in the same room. It's crazy because last October she was fine. I believe she had a wrong diagnosis initially (she is living in Serbia) and things progressed super fast. My partner is away for another month to process this with the family there so it's a bit of a rough time. It is so sad to see someone so young die like this. I am trying to give space and take care of myself. Hopefully, in June we can take a month somewhere by the beach and do nothing but enjoy life.

In the meantime, I am trying to remain positive, I have to admit that I feel like I am lacking resources…But hey, I didn't want to sounds too negative here. I am still enjoying those walks with friends, exploring new coffee shops, reading and watching more, and try to focus on work and personal development. 🥰

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@mariabrat. Hi! It’s great to hear from you too!
I just spent 45 minutes writing a letter to you and it disappeared when I sent it! arghhhh. I need to take a break now. Giggle…yes, this is me dealing with stress. I’m going for a walk but I’ll be back later and we’ll “chat” again after my head clears!!

It’s later in the afternoon for you, so I do hope you had a pleasant day! Hugs! Lori

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ahah wow!! Sorry that it got erase. 2 updates since yesterday….I did an allergy test and they also tested some viruses and EBV came out positive on reactivation ?!?? which makes me think I might have some kind of chronic EBV that could create a bunch of issues from what Ive read online. Also the 🧬 department accepted to do my full genome testing yaaaay but they asked for my parents DNA which will be complicated as they are in Canada. I will speak to my doctor next week and we will see what he thinks of all that.

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@mariabrat

ahah wow!! Sorry that it got erase. 2 updates since yesterday….I did an allergy test and they also tested some viruses and EBV came out positive on reactivation ?!?? which makes me think I might have some kind of chronic EBV that could create a bunch of issues from what Ive read online. Also the 🧬 department accepted to do my full genome testing yaaaay but they asked for my parents DNA which will be complicated as they are in Canada. I will speak to my doctor next week and we will see what he thinks of all that.

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@mariabrat You are not going to believe this! Part of my lost message yesterday was asking if you’d ever been tested for Epstein Barr Virus or Lyme disease. I’d looked at your original posting again and kept running through the symptoms; sore glands, low white blood count, mouth sores, fatigue, tenderness in spleen area.
EBV is one of the viruses I’m always being checked for post transplant! 😉 The symptoms just fit!

You have to be breathing a sigh of relief with the news. It will be interesting to hear what your doctor has to say. ☺️

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@loribmt

@mariabrat You are not going to believe this! Part of my lost message yesterday was asking if you’d ever been tested for Epstein Barr Virus or Lyme disease. I’d looked at your original posting again and kept running through the symptoms; sore glands, low white blood count, mouth sores, fatigue, tenderness in spleen area.
EBV is one of the viruses I’m always being checked for post transplant! 😉 The symptoms just fit!

You have to be breathing a sigh of relief with the news. It will be interesting to hear what your doctor has to say. ☺️

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I tested negative in October when my symptoms started but when I look back at the results they are also high so maybe each lab as a different interpretation! Id be curious to hear what my doctor say 🙂 I hope you’re enjoying your weekend

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I think you should become a doctor 😛

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@mariabrat

I think you should become a doctor 😛

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You’re too funny!!! The world would never be ready for Dr Lori. Ooo But I could have my own tv show. 😂. Hahah no…my face is not “made for public viewing”.

Let’s just say, by the time someone gets my age, if one pays attention, you pick up valuable insights along the way. My being an information junky with a fascination for medicine and science, along with life lessons, education, years of being the caregiver in the family, and my medical experiences over the years have given me a pretty reliable intuition.

That’s what Connect is all about. It’s people coming together to relate their experiences, or share what they know to help other members. I wish I’d known about Connect when I was going through all my cancer treatments. But I’m here now to offer help and hope.

And now you’re gathering your own insights and observations to tuck away for future reference. You are in a position to help others too! ☺️ We’re like one big happy family here on Connect. Except no one is having a veggie fight at the table tossing peas. LOL.
Have a delightful weekend! Lori

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