They found something growing in the lungs

[valentinelynx]

@HABS93 I am sorry to hear you have lymphoma. I am now very much hoping that you have a highly treatable type of lymphoma. It won't be easy, but you can be treated, and perhaps you will one day be able to put illness behind you and live as a healthy person for the rest of your long interesting life!

I'd like it if you continued to let us know of your progress. We care about you, if I can be so bold as to speak for my forum-mates, and are here to listen to your gripes and successes and provide support if you like.

 

[chger]

Fu%# it... Keep strong, i wish you the best! idk what else to say

 

[Judee]

I'd like it if you continued to let us know of your progress. We care about you, if I can be so bold as to speak for my forum-mates, and are here to listen to your gripes and successes and provide support if you like.

This goes for me too. I hope you will be able to keep us informed because we care. (No pressure though.)

 

[Shoshana]

It was great to see you had written a follow-up for /with us, @HABS93
Thank you.
I felt upset for you, after that news, but yes,
you are strong and can fight this, step by step, and we are in your corner.
You have been good and kind, back to us, and i remember that, too.
There is a lot of good in you.

 

[crypt0cu1t]

I second what @Gingergrrl said about paraneoplastic syndromes, if you have a mass in the lungs, this could be the reason for your symptoms!

 

[MTpockets]

Hang in there! You've got this. You're a fighter and now you have an opponent to focus on. I will be praying for you.

 

[YippeeKi YOW !!]

@HABS93 , @RebeccaRe, @pamojja, @Moof

It's lymphoma :/

Lets see what kind of lymphoma.

Lymphoma is no walk in the park, but I'm older than you, and thanks to over 2 years of Drs misdiagnoses and dismissiveness, it had a huge head start before treatment started, I was High Grade Stage 3. It had spread thru-out my body, was choking my heart, left lung, colon, and spine. By some miracle tho, it hadn;t invaded any other organ systems, which would have probably been fatal.

I survived, and so will you. I promise. Honest.
@pamojja is right. There are many, many different kids of lymphomas. Do you know yet if it's Hodgkin's or non-Hodgkin's? The biopsy will establish whether small cell or large cell, HL or NHL, and any number of other variations.

I wonder if that has been the cause of your fatigue?

Fatigue is a hallmark of almost all cancers, but particularly those that affect blood/lymph systems.

Lymphoma's quite scary enough, but on the positive side, it's less so than lung cancer.

Absolutely agree!!! Your chances are terrific with lymphoma, but not so sure about with lung cancer.

You're going to be OK, you're going to come thru this, and you're not going to believe how much better you're going to feel!!!

 

[Gingergrrl]

I'd like it if you continued to let us know of your progress. We care about you, if I can be so bold as to speak for my forum-mates, and are here to listen to your gripes and successes and provide support if you like.

Well said @valentinelynx and please keep updating us and letting us know how you are doing @HABS93. I am so sorry to hear that it was lymphoma but we are all definitely here for you to listen and provide support as you kick it's butt.

I second what @Gingergrrl said about paraneoplastic syndromes, if you have a mass in the lungs, this could be the reason for your symptoms!

I wasn't sure @crypt0cu1t if the Mayo paraneoplastic panels would still be useful since the doctor knows it is lymphoma vs. lung cancer. Does lymphoma match with a paraneoplastic syndrome the way that lung cancer does? Am tagging @kangaSue who understands this all much better than me.

 

[crypt0cu1t]

I wasn't sure @crypt0cu1t if the Mayo paraneoplastic panels would still be useful since the doctor knows it is lymphoma vs. lung cancer. Does lymphoma match with a paraneoplastic syndrome the way that lung cancer does? Am tagging @kangaSue who understands this all much better than me.

I'd definitely say to give the PAVAL panel and/or Quest Autoimmune Neurology panel a go! It's rare but I've found a few case reports of Lymphoma being associated with AE, LEMS, MG and AAG. I'll provide the studies when I get a chance to find them!

It seems like a tumor anywhere can cause a paraneoplastic syndrome regardless of tumor type.
That's why I'm trying very hard to get a full body PET after it being recommended by a physician at the apheresis unit I go to.

 

[Gingergrrl]

I'd definitely say to give the PAVAL panel and/or Quest Autoimmune Neurology panel a go! It's rare but I've found a few case reports of Lymphoma being associated with AE, LEMS, MG and AAG. I'll provide the studies when I get a chance to find them!

Thank you and I had forgotten that from 2015 when I tested positive for the calcium channel (paraneoplastic) autoantibody. I was told that while small cell lung cancer was the most common cancer linked to it, that it can be many types of tumors that trigger it.

If you can only do one Mayo panel @HABS93, I would do PAVAL (paraneoplastic panel) b/c it's the most comprehensive of the different paraneoplastic autoantibodies which could be a possible explanation for some of the your other symptoms (not the fatigue and symptoms that are associated with the cancer itself). And if it is totally negative, that is also good to know.

It seems like a tumor anywhere can cause a paraneoplastic syndrome regardless of tumor type. That's why I'm trying very hard to get a full body PET after it being recommended by a physician at the apheresis unit I go to.

I never did a full body PET scan vs. three years of high resolution lung cat scans (although I considered it at the time). That is interesting that the doctor at your apheresis unit recommended it. Can you tell me via PM where your apheresis unit is?

 

[crypt0cu1t]

I never did a full body PET scan vs. three years of high resolution lung cat scans (although I considered it at the time). That is interesting that the doctor at your apheresis unit recommended it. Can you tell me via PM where your apheresis unit is?

Sure, I just sent you a PM

 

[HABS93]

@HABS93 , @RebeccaRe, @pamojja, @Moof


Lymphoma is no walk in the park, but I'm older than you, and thanks to over 2 years of Drs misdiagnoses and dismissiveness, it had a huge head start before treatment started, I was High Grade Stage 3. It had spread thru-out my body, was choking my heart, left lung, colon, and spine. By some miracle tho, it hadn;t invaded any other organ systems, which would have probably been fatal.

I survived, and so will you. I promise. Honest.
@pamojja is right. There are many, many different kids of lymphomas. Do you know yet if it's Hodgkin's or non-Hodgkin's? The biopsy will establish whether small cell or large cell, HL or NHL, and any number of other variations.

Fatigue is a hallmark of almost all cancers, but particularly those that affect blood/lymph systems.

Absolutely agree!!! Your chances are terrific with lymphoma, but not so sure about with lung cancer.

You're going to be OK, you're going to come thru this, and you're not going to believe how much better you're going to feel!!!

Hey thank you for caring . In getting a biopsy at Toronto general next week to see if it's hodgins or non hodgins . Based off those results we start treatment! Honestly crazy. I thought I had chronic fatigue. Brain fog is often a symptom when fatigue sets it . Not sure about the eyes though they might not be related. I'm not entirely sure what a year of living with lymphoma can do other then fatigue.
Oh yeah I haven't seen the Montreal Canadians win a cup and I'm not dieing until I see them win

 

[andyguitar]

Good luck with the biopsy @HABS93

 

[Hufsamor]

Oh yeah I haven't seen the Montreal Canadians win a cup and I'm not dieing until I see them win

There you go...
I'll find out who's their best player at all time, and make sure to send them a packet of flu or something...
So they won't win in a million years, and well keep you up and going for ever and ever

 

[Carl]

I found this information which might be useful. The first drug is fairly inexpensive, some of the supplements cost a little more.



The source of many of the other links

A drug with which many people have had success

Another useful resource

Best of luck @HABS93

 

[JES]

Hey thank you for caring . In getting a biopsy at Toronto general next week to see if it's hodgins or non hodgins . Based off those results we start treatment! Honestly crazy. I thought I had chronic fatigue. Brain fog is often a symptom when fatigue sets it . Not sure about the eyes though they might not be related. I'm not entirely sure what a year of living with lymphoma can do other then fatigue.
Oh yeah I haven't seen the Montreal Canadians win a cup and I'm not dieing until I see them win

Good luck and keep strong! Speaking of Montreal and as another hockey fan, it was now almost 20 years ago, but I still remember when former Canadiens captain Saku Koivu got diagnosed with non-hodgkin lymphoma. I remember things looked pretty bad at some point, but incredibly he returned back at the end of the same season and the following season he had his strongest ever year.

 

[Rufous McKinney]

Hang in there @HABS93 .... they know alot more about these types of things then our fun MECFS...we are rooting for you....You are in our thoughts and you will get to the other side of this...

 

[Shoshana]

Oh yeah I haven't seen the Montreal Canadians win a cup and I'm not dieing until I see them win

Good thinking!
Now there's some added motivation for you to kick butt!


After you are better, i will become a fan and root for them for and with you.
Until then, all hands on deck, rooting for YOU !

 

[Wolfcub]

@HABS93 I am sorry you have been diagnosed with this. But now you have an excellent team working with you, and I am sure, an excellent hope for a cure.
Kicking some lymphoma butt is a great idea !

My kindest thoughts and I wish you all the very best

 

[Sushi]

Hey thank you for caring . In getting a biopsy at Toronto general next week to see if it's hodgins or non hodgins . Based off those results we start treatment!

We are all with you. A number of members here have had successful treatment for lymphoma and with the expert doctors available you will too. Please keep us posted.