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VeXXeD ViXXie

Has Anyone Dealt with Lymphoma???

Over a year ago masses were located between my abdominal lymph nodes and my spine--

Since then they've wrapped around my Inferior Aorta and Inferior Veena Cava. 

Apparently it's too risky to even take a sample, lymphoma is SUSPECTED but cannot be confirmed... 

Over the last year I've lost weight, the last nodes under my ears/against my jaws have swollen and hardened, and keeping anything down is A CHORE.

When I was in my late teens I had Ganglioneuroma/Neuroblastoma tumors spanning my spinal cord, left kidney, and stomach-- less than a year later had CARCINOID tumors in my Appendix, fallopian tubes, ureter, and gallbladder--

But I was a tad luckier then because all was rectified through a series of surgeries-- organ removals, etc. 

Meaning: No Chemo.

I already suffer from debilitating RSDS and now this... 

I've been waiting a year for some kind of resolution but I'm consistently told:

"Wait and See..."

I'm petrified--

Anyone have any advice????

 

Yours,

ViXXXie

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2earls

I'm afraid that I don't have any advice to offer, but I can certainly sympathize with your anxiety. Nothing is worse than uncertainty and then your mind tends to wander to the worst case scenario.

This is nothing nearly as serious as your story, but a couple of years ago, I got called back for a second mammogram because they saw "something". At the same time my doctor thought she felt something unusual when she was giving me a physical and pushing on my stomach and abdomen and had me schedule a sonogram on my liver. My mom had recently passed from liver cancer so of course I imagined that I was riddled with cancer and I worried myself to the point where my hair started falling out which I also attributed to cancer.

Of course it was only from the stress that I put upon myself. Wish I knew what to say to avoid putting yourself through something similar and I hope you will have the answers you need very soon. Maybe a different doctor's opinion? 

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RedGypsy

I realize this was posted in January. I hope everything has turned out OK for you, or are you still following the wait-n-see protocol?  I am a cancer survivor myself, anyway wishing you well friend. 

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SkyDog

Aw sweetie, I too hope this turned out well for you! I had a HUGE Chondrosarcoma in my left humerus (shoulder). I had to find a Orthopedic Oncologist and by the time I had the surgery the impingement on the nerves had caused me to lose total use of my left arm. Chondrosarcoma does not respond to chemo nor radiation....

I pray you came through this, you have been through so much already!  My bone cancer almost cost me my left arm, through the Grace of God they were able to get good margins and I was simply left with a 7 inch scar and full use of my arm. A very small price to pay for months of pain with bone cancer. I hope and pray you are well. Please let us know! 

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Heavenlee

@SkyDog I totally relate to your post, although I dont have cancer, my doctor found two angioplasties on my liver after Ifound out my liver was inflamed. He also found on my colon and I have an AH1 marker for an autoimmune disordere  that attacks my liver. He showed me the pictures below after my endoscopy and colonoscopy and said that we will do blood work and liver scans every three months so we can catch them when they turn into cancer, so Im precancerous. It literally has scared me to death. I have alway been healthy its not fun waiting around for them to turn cancerous, which they will he says but we have to catch them early so we can begin treatment. Im literally not allowed to take any medication, so Im not allowed anything  for pain and getting off benzos is so hard, but he said anything I take hurts my liver. He doesnt even know how badly i have abused them. Im a mess and afraid, I have changed my diet and trying very hard to quit smoking, Ive been smoking cannatonic and Charlettes Web and use CBDs everyday, vaping and orally. @RedGypsy im happy to hear that you are a cancer survivor it gives me hope, I just want to know howyou dealt with your diagnoses? I have been severely depressed, what do you do to take in all of this? Thanks in advance for any help!

3FA90D9E-E0FA-4D20-996F-F92DF3086CE1.jpeg

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SkyDog

Heavenlee,

First of all, big hugs from me! Just because something is pre-cancerous it doesn't mean certain cancer! I am proud of you for taking care of yourself, keep doing that! Going off of your benzo's may not be an option, if you can't do it, don't beat yourself up! Most of us have abused our bodies over the years!

1) NO ALCOHOL

2) NOTHING WITH TYLENOL!!!!

3) NO NSAIDS!!!!!!  i.e. IBUFROFEN,  ALEVE (naproxen sodium)

4) THE BEST THING TO TAKE IS HAVE YOUR DOC PRESCRIBE FENTANYL PATCH OR Hydromorphone (Dilaudid)

Good Luck sweetie! Please let us know how you are doing! 💖 :9_innocent:

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Jools
18 hours ago, Heavenlee said:

@SkyDog I totally relate to your post, although I dont have cancer, my doctor found two angioplasties on my liver after Ifound out my liver was inflamed. He also found on my colon and I have an AH1 marker for an autoimmune disordere  that attacks my liver. He showed me the pictures below after my endoscopy and colonoscopy and said that we will do blood work and liver scans every three months so we can catch them when they turn into cancer, so Im precancerous. It literally has scared me to death. I have alway been healthy its not fun waiting around for them to turn cancerous, which they will he says but we have to catch them early so we can begin treatment. Im literally not allowed to take any medication, so Im not allowed anything  for pain and getting off benzos is so hard, but he said anything I take hurts my liver. He doesnt even know how badly i have abused them. Im a mess and afraid, I have changed my diet and trying very hard to quit smoking, Ive been smoking cannatonic and Charlettes Web and use CBDs everyday, vaping and orally. @RedGypsy im happy to hear that you are a cancer survivor it gives me hope, I just want to know howyou dealt with your diagnoses? I have been severely depressed, what do you do to take in all of this? Thanks in advance for any help!

3FA90D9E-E0FA-4D20-996F-F92DF3086CE1.jpeg

An angioplasty is a test they do to check your heart. They place a very think wire into the groin and then work it into your heart. Could it be some other growths ?

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SkyDog

Jools,

Heavenlee meant Angiodysplasia

 

Heavenlee don't stress sweetie! And I would get a second opinion about this whole thing, thank goodness you live in CO right now! Just stay away from the Tylenol!

It is scary, I know... Just keep taking care of yourself, ok??? I wish I could pm, but my electrum wallet still won't let me donate!!! GRRR!

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Heavenlee

@SkyDog, boy did I get hell, no just gentle fun, if you cant laugh at yourself whats the point of living life! I said the Almond Brothers, I wake up early and was still half asleep. I did try to redeem myself they were first the Allman Joys, so I must have candy on my mind! But thank you, you gave me a huge sense of relief, and you are totally right, I am getting a second opinion, I have Blue Cross Blue Shield and they suck! I want to go back to humana in January. All he did was give me this report, and said we are going to closely watch these two lesions on youre liver. Not angioplasties, sorry I got confused, but thats a whole different story with my heart. But I do stay away from tylenol, its worthless to me. But damn i even abuse ibuprofen, I used to take every morning because my back always hurts because I have to use a wedge to be 6 inches elevated because of acid reflux disease. But he doesnt want anything to go through my liver. He makes me feel rushed all the time, like he has more important things to do, asking questions is impossible with him. I get my liver scan and blood drawn and damn another mammography done all next week. Im hoping my alts and asts are lower because I have been using cbds religiously since the endoscopy and colonoscopy. But the thought of getting blood drawn terrifies me! I literally have no veins left, so the thought of getting blood drawn terrifies me even more. So Im spending this weekend drinking so much water I dont sleep well because I wake up every hour having to pee!  I wish they could use an ultra scan like they do at the hospital when I have had operations, instead of feeling like a pin cussion! But I wanted to thank you, you definately helped being scared and depressed! I tried writing you, and hell, I still havent figured out using bitcoins! I had a close friend help me and paid the person back through paypal, if it werent for this person I couldnt figure out the whole bitcoin thing, it was easier before but Im sure @Admin is doing it this way for our protection. Did you read all about bitcoins? I did write you as well, Im assuming you didnt get it. I cant wait to pm you! I saw Dickie Betts play with the Tedeshi Trucks Band down south, it was an awesome concert! I wanted to trip, but some dude sold me moll$ instead, lol, its great meeting you, cant wait to pm you. I hope you definately stick around. The people are great here like family to me. Great meeting you and thanks for all your great advice, your awesome to have here!

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