Misc is my support system. Getting a stem cell transplant and some chemo again

[ShayZ]

Posting in two replies as BB wont let me post this in one thread, keep getting an error.

I dont really tell people nor can I talk to people in real life as deeply as I can with the misc. For those of you who remember me, 8 years ago I found out with the misc that I had Hodgkins Lymphoma. I got thru it with chemo, radiation, etc. Misc was literally my support system. Misc made me the person I am today.

While most of you guys dont know me anymore and I obviously dont know you, I just know that you always have my back. So Ill be back for the lulz and comradery at least for some time as I will have nothing else to do lol.

Ill post a long version and a short version, and a video of what my skin looks like now...

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Long version
8 Years ago I had Hodgkins Lymphoma. I took ABVD chemo, and 18 rounds of radiation for treatment, and recovered fairly well, or at least I thought so. In the 7 years of recovery I have had progressive hives all over my body, constant colds, coughs, ITP (platelet drops causing hospitalization a few times), progressive lung disease which has taken my lungs from 100% function to under 35%, rheumatoid arthritis, and oddly the thing that has bothered me most is the ridiculously fast aging.

I noticed it a few years ago when my face started having lines and wrinkles all over it. I am only 34, and even my dad has no lines on his forehead at 71, so I knew something was off. I have probably visited 50+ specialists throughout the United States trying to find out how to stop my lung progression, figure out why I have hives, and figure out why my skin resiliency is being destroyed, and no one knew, no one had seen these symptoms before.

Finally, In March of this year I met a geneticist who specialized in Mixed Connective Tissue Disorders. She told me she had never seen a case like mine, but she had read about a disease called Acquired Cutis Laxa, and she felt I had it. Reading up on it I saw that major symptoms were
Rheumatoid Arthritis - Check
Destruction of Elastin and Collagen Cells - Check
Asthma, Emphysema, COPD - Check, Check, Check
Urticaria/Hives - Check

[ShayZ]

I checked all the boxes for this disease which had only been clinically reported to exist in 1/10,000,000 people. What were the odds? I started doing some research on the disease and kept reading that there is no cure for it, but then I stumbled upon a clinical report where someone was treated with a Stem Cell transplant. I decided to call Emory and moved all my physicians to be part of the same team. I met an incredible Hematologist who specialized in Bone Marrow transplants. On our first visit he said he had never heard of or seen a Cutis Laxa patient, but he concurred that I likely did have it, and he too felt that a BMT would halt the progression of the disease. I ended up seeing 4 more specialists at Emory including dermatologist, rheumatologist, pulmonologist, and geneticist. His theory was that I had remnant lymphoma which was attacking my good cells via a paraprotein and destroying my lungs, destroying my skins elastin, destroying my joints (Rhematoid arthritis), and basically killing me slowly. He was right. It is kind of like a myeloma, I have all the markets for myeloma, but it isnt an actual cancer. But treated like cancer.

Finally today, he confirmed that we will proceed with a stem cell transplant. Itll include 7 days of Neupogen shots to boost my bone marrow. Then 2-3 days of bone marrow collection. Then high doses of chemo called melphalan to destroy my immune system to 0 to eradicate all my good and bad cells (the paraprotein). Then they will put the good stem cells they harvested back in me and Ill hang out in the hospital or a few weeks or months until I am okay to venture out in to the world.

A BMT is like a new immune system, you are basically born again and people refer to it as your 0 birthday. I will be very immunocompromised, will need to get all my baby shots a year later because those all get wiped out like MMR, tetanus, etc. The hope that this worked. There have been less than 10 stem cell transplants for this condition done worldwide. It is extremely experimental. If I dont do it, then my skin will progressively get worse, my lungs will get worse, and I will need a double lung transplant in a few years, and then my lungs will fail again as we didnt fix the root cause. I just hope it all works. If it doesnt work, then I dont know what I will do. Neither do doctors really...

I am a dad now and have two beautiful baby girls. My wife also depends on me as a husband and man. I have too many responsibilities in life, and I just need to be there for my babies. I would love any and all positive vibes. You guys had me last time, and I know I havent been here, but I am asking for love and support again.
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Cliffs
- Had lymphoma 8 years ago, thought I was cured.
- It likely caused a paraprotein, like a myeloma, but not an actual cancer if that even makes sense, which has been slowly attacking me or the last 7 years very slowly and progressed quickly the last 2 years
- Lungs have been destroyed from 100% function to 30%
- Skin elasticity has been lost and compromised. Total body, not just my arms seen in the video. Imagine that... But everywhere.
- Rheumatoid arthritis from the protein is kicking in. I will have random aching joints daily. Extreme pain, and sometimes debilitating and I literally cannot walk.
- Getting a stem cell transplant, will spend some time in hospital, and then 3-6 months in isolation while my immune system recovers.
- If this doesnt work, I dont really have any other options. It has to kill this paraprotein, it has to...
- I just want as many god vibes as possible.

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If you know me in real life on FB, do not mention it there. None of my family outside my immediate fam knows anything yet. Please.

Video of skin below, imagine this, but whole body, and what it does to my outside skin, its also doing to my lungs right now. Doctors fear it could start attacking my heart next and destroying the aortic walls, etc.
https://drive.google.com/file/d/1Iws...ew?usp=sharing

[drvillain]

i remember the first round of this. Good luck OP

[zarx]

edit: just saw the reply, forums was glitching for me. Good luck OP we got your back.

[FrankCostanza]

Good luck brother

Who referred you to the experimental stem-cell treatment?

[wincel]

I remember u dude. Good luck!

[dbluevette]

You and your family have my prayers and positive vibes headed your way brother.

[DrugsToGetBig]

youre an OG my man


praying for you


strength and honor my friend

[orangetide]

How did you find out? Srs.

Currently have lump in my armpit, spleen z & liver pain, sudden intolerance to alcohol, extreme fatigue, soreness in other lymph node areas but no swelling

Doc said there are no tests for lymphoma he could do (10000% ded fukin srs, this guy was so pissed i wouldnt get a covid shot he refused to do even cbc or liver function test) but was able to get a mono test. If thats negative idk what to do.

[wolfofmarkcity]

That's horrible, I wish you luck. Can't even begin to imagine what it's like being in your situation.

[BroncManiac]

Good luck, brah! We’re here for you.

[Realclout]

HERE for you BOYO, My support SYSTEM as well. SRS.

SRS.

[ShayZ]

Good luck brother

Who referred you to the experimental stem-cell treatment?

My old pulmonologist told me I needed to go to Emory and have an entire team working on me. As I was seeing so many specialist but all in different groups. I called Emory and asked for a Lymphoma doctor. They called me back and said since I had not had lymphoma in 8 years that they would put me with the community oncologist. I explained that it wasnt for lyphoma and that I had a disease that I thought may be cutis laxa. They called me back two days later and said they made an appointment with a Dr. Waller who is their bone marrow transplant specialist.
My first visit with him was over 2 hours long. He explained what he thought based on reading my history and notes. Proceeded to refer me to derm, did 3 skin biopsies, did a bone marrow biopsy, ct/pet scan, and countless vials of blood.

He read a few clinical reports of cutis laxa linked to a monocolnal gammopathy. His hypothesis was that these MGUS can be eradicated using stem cell transplants. He is the smartest and most thorough doctor I have ever had the pleasure of meeting. He gave a **** and did his homework.

How did you find out? Srs.

Currently have lump in my armpit, spleen z & liver pain, sudden intolerance to alcohol, extreme fatigue, soreness in other lymph node areas but no swelling

Doc said there are no tests for lymphoma he could do (10000% ded fukin srs, this guy was so pissed i wouldnt get a covid shot he refused to do even cbc or liver function test) but was able to get a mono test. If thats negative idk what to do.

Bro, go get another opinion asap. Ask for bloodwork, ct scan, and biopsy. Demand that ****. If something is wrong usually something in your blood will be off. Thats the first step, and if he doesnt order go pay for a damn CBC yourself. They should be under $100, even with self pay.

For my lymphoma, my first issue was a swollen lymph node on my neck. I was also getting random hives on my hands.

[AdvancedDreamer]

I wish you luck OP but I would be very cautious. If you get covid while being immunocompromised, it’s pretty much over for you. It really comes down to the nurses and doctors who come into contact with you. If they take proper preventative measures, you’ll be fine.

[pUniCepts]

I imagine there's at least some relief in knowing the cause and moving towards treatment. Hope everything goes well. Keep us posted.

[GlassMoon]

Op pls ****ing stay safe and best of luck, keep us updated, hurts my soul knowing Misc brahs out here dealing with **** like this srs

[Huss!]

ShayZ - I remember your first thread and I am so sorry to hear about this update. Keep up the positive attitude and keep hustlin' cuz. Your early threads on your successful business enters my mind from time to time and has contributed to some of my side hustles turning into something more.

Keep us posted on your journey. If god forbid you get worse, especially your lungs with emphysema or the need of a double transplant, there are some promising drugs and procedures in trials that can help slow progression. What do your FVC and FEV1 look like? Currently in the pulmonary space.

Stay strong.

[gainztrain818]

Fuk op…….hang in there brah……………u got this!

[multiplemiggs]

Got you in my prayers brah. Hope everything goes well.

[dabbmw2002]

fuark man. When I read stories like yours I'm blown away by the strength it takes to go through all that and puts a lot our own petty life complaints in perspective. Awesome that you were able to find help. Godspeed and good luck with your treatment. You got this big dawg!

[Jandels]

You got this man

[LeakyQuesadilla]

wishing you the best brah.

i remember back when you created the misc song and even did the body transformation.

this site is a toxic shythole and no longer what it used to be but i hope miscers can tune it out for this OG miscers sake.

[TryingBB]

Good luck brother!! You’ll make it through

[TryingBB]

fuark man. When I read stories like yours I'm blown away by the strength it takes to go through all that and puts a lot our own petty life complaints in perspective. Awesome that you were able to find help. Godspeed and good luck with your treatment. You got this big dawg!

You read the news of the ny jets assistant coach or someone who did after a bicycle accident??

https://www.cnn.com/2021/07/22/us/gr...spt/index.html

From the article…

'Live every day as if it's your last, and love those around you like it won't last!'

[ShayZ]

I wish you luck OP but I would be very cautious. If you get covid while being immunocompromised, it’s pretty much over for you. It really comes down to the nurses and doctors who come into contact with you. If they take proper preventative measures, you’ll be fine.

So, I already sleep with oxygen right now due to my weakened lungs, but you are probably right. I just gotta be super ****ing careful. Going to look like an idiot walking around outside with a damn mask on lmao. But is is what it is. Im sure the doctors and nurse will have full PPE while im in the hospital, and ill be wearing a mask and shield too. They told me its a reverse osmosis room? I think, so it has its own filtration system while I am there since stem cell transplant patients are the most vulnerable to disease and infection.

I imagine there's at least some relief in knowing the cause and moving towards treatment. Hope everything goes well. Keep us posted.

Honestly, finding out what I had after so many years was a massive relief... I even went to Mayo Clinic 3 years ago and they had noooo clue. Granted it had not progressed to this current level, but yes... Finally having an answer, and some hope to stop this progression means the world to me. I am so blessed and thankful. If this happened even 10 years ago I imagine that I would not find out what I have since it is so rare.

ShayZ - I remember your first thread and I am so sorry to hear about this update. Keep up the positive attitude and keep hustlin' cuz. Your early threads on your successful business enters my mind from time to time and has contributed to some of my side hustles turning into something more.

Keep us posted on your journey. If god forbid you get worse, especially your lungs with emphysema or the need of a double transplant, there are some promising drugs and procedures in trials that can help slow progression. What do your FVC and FEV1 look like? Currently in the pulmonary space.

Stay strong.

Thanks man!
FVC - 3.55
FEV1 - 1.42
FEV1/FVC - 40% of predicted
DLCO - 16

Op pls ****ing stay safe and best of luck, keep us updated, hurts my soul knowing Misc brahs out here dealing with **** like this srs

It makes us stronger and gives us character. As long as it doesnt kill us lol. But this wont hurt me, Im going to destroy this paraprotein and come back stronger than ever.

[Achilles87]

Fuk

Good luck Dave man

[spaggeti]

Sounds like you have a great team behind you especially this geneticist, glad you were able to get to the bottom of it. Can imagine how exhausting it was. Now you have the procedure setup and misc behind you the whole way, we are right here with you dude

[ShayZ]

wishing you the best brah.

i remember back when you created the misc song and even did the body transformation.

this site is a toxic shythole and no longer what it used to be but i hope miscers can tune it out for this OG miscers sake.

Sure, it isnt what it use to be. I lurk here and there, and there are some lulz to be had. A lot of moderation and crackdowns happened, and I get it. But there are some amazing and incredible people here still.

Misc life ain’t no strife. You got this brah

lol fuark. I wish my old TY account didnt get banned, the damn song had over 150,000 views at one point.

You read the news of the ny jets assistant coach or someone who did after a bicycle accident??

https://www.cnn.com/2021/07/22/us/gr...spt/index.html

From the article…

'Live every day as if it's your last, and love those around you like it won't last!'

Very true. Anyone, can die at any time. Cherish the moments we have, and leave no regrets.

[Hallu]

Hey, wish you the best man. I remember you posting here years back about your successful mobile / repair / parts business.

[BigNik78]

Prayers and good vibes go out mayne. Looking forward for this to all be behind you and you getting back to full health asap.