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Non Hodgkin's Lymphoma Friends

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What a shock

Jimmy82 profile image
15 Replies

My non Hodgkin's lymphoma just turned into bone marrow cancer! Luckily I fell and ended up in the hospital. It took 8 days and a blood test to find out what suddenly made me so week and there it was! Now doing chemo and will have another bone marrow biopsy to see if any improvement. If not onto new drug

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Jimmy82 profile image
Jimmy82
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15 Replies
Glenmeadow profile image
Glenmeadow

Jimmy 82 I have lymphoma that takes up 30% of what should be bone marrow and it makes me profoundly anemic (not enough reds) and neutropenic (not enough whites). Incredible how depleted and strengthless it can make you feel. Prayers for you that your chemo is effective and that they can get you to feeling better! What name did they give for your bone marrow cancer?

Jimmy82 profile image
Jimmy82 in reply toGlenmeadow

I will not know until I have another bone marrow biopsy after first round of chemo First biopsy thought it was waldenstrom but doc does not think so but at 70-80 percent it might be stage 4 which is quite a shock for mr

Glenmeadow profile image
Glenmeadow in reply toJimmy82

I was very shocked as well as mine is also stage 4. One encouragement for you: staging in lymphomas is not nearly as relevant as it is in solid tumor cancers. You can have one lymph node in each quadrant of your body and any amount in your bone marrow and poof: You are stage 4. It is not the same thing as finding cells whose DNA are breast cancer in the bone marrow; lymph cells start their life cycle IN the bone marrow. When I freaked that my marrow was 30% infiltrated by lymphoma I was told they see 100% infiltrations. When I freaked that I had lymph nodes in my armpits, trachea chest abdomen and groin I was told yes but they are LITTLE. The overall bulk of lymphoma in your body is not that great. I just want you to take heart that staging is less relevant with us. Good medicine and good fight and good support may be much more telling. I will be praying for you for positive changes on your next bone marrow as you finish your chemo ❤

Emily313 profile image
Emily313 in reply toGlenmeadow

Great reply. Helps all of us.

PositiveLiving profile image
PositiveLiving in reply toGlenmeadow

Wow! You have encouraged me and inspired me! I too, have stage 4 bone marrow. I went through 6 months of intensive chemo and February will be my last chemo of the two years of maintenance. I have been in remission for a year so feel very lucky. I am told after the last chemo my energy will come back somewhat. Have a wonderful day and thank you Glenmeadow for sharing!

laylalulu profile image
laylalulu in reply toGlenmeadow

Glad to hear this information on the bone marrow involvement geeze I was pretty nervous mine was at 50% when diagnosed but I only had one or two lymph nodes involved. Blood tests are showing everything's fine I hope so. I hope you do well jimmy from all I read on here there is lots to be positive for as far as thectreatments being successful. Keep your chin up

Reem-ayoub profile image
Reem-ayoub in reply toGlenmeadow

Very true. Size is quite important when it comes to lymph nodes in lymphomas. Tumors is another matter as doctors worry when they start affecting lymph nodes.

BelindaTupper profile image
BelindaTupper in reply toGlenmeadow

Excellent advice Glenmeadow! My Hematologist told me the same.

Afleisch44 profile image
Afleisch44

Good luck

Mennie profile image
Mennie

I'm think about you good luck and stay strong xox

wmay13241 profile image
wmay13241

Much luck. With Stage 4 NHL many people have it spread to their bone marrow. The right cancer treatment can eliminate the bone marrow cancer. The trick is to find the right treatment for your particular type of NHL. My 69 year old wife had follicular lymphoma had 50% bone marrow. She went through four treatments (R-CHOP, BR, Ibrutinib and Idelalisib) before getting CAR-T. She has been in complete remission for 11 months with no cancer in her bone marrow.

PositiveLiving profile image
PositiveLiving

I too, have non Hodgkin's lymphoma with bone marrow. Don't worry you can go into remission where the bone marrow can repair itself. The chemotherapy is a bit of a journey but you do get stronger.

Melodyj profile image
Melodyj

So sorry to hear that. I hope you will have good results with the chemo! Apparently you did not have any symptoms?

Jimmy82 profile image
Jimmy82 in reply toMelodyj

No symptoms until no

use of muscles. Could not raise my legs at all Took lots of rehab to get back in shape but the neuropathy in legs is killing me. Doc thought chemo would help but nothing yet

BelindaTupper profile image
BelindaTupper

That fall was a big blessing in disguise! Prayers for a good outcome!

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