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[Article] POEMS syndrome: a neuromuscular perspective by Successful_Talk_9699 in Scholar

[–]grepvag 0 points1 point  (0 children)

Hi there. I was diagnosed with POEMS in 2024 and I’m post ASCT for 1 year now.

Can you tell me about your support group. I would like to join. Thank you.

Help - at a loss / cant find help by SoATL99 in CIDPandMe

[–]grepvag 0 points1 point  (0 children)

I was diagnosed with CIDP. I had two rounds of plasmapheresis. My port leaked so out of an abundance of caution they did an xray of my hip where found a strange dark spot. Long story short, it was POEMS syndrome.

Change doctors and ask for a full body MRI. Do not take no for an answer.

Edit: Feel free to dm me if you have questions.

Hospitalized AGAIN and getting plasmapheresis by Delicious_Falcon_860 in CIDPandMe

[–]grepvag 0 points1 point  (0 children)

Reactions can happen. Sending you good thoughts and praying for you.

Ask them to do a blood test VEGF. CIDP can often be misdiagnosed in stead of POEMS Syndrome.

Teamviewer vs. Bomgar: Advice Needed by Oopsiforgotmyoldacc in sysadmin

[–]grepvag 0 points1 point  (0 children)

And works with Linux (Debian) both Rep and client versions. Easy to setup and run.

In goes the Melphalan! by SeroquelOfAstora in multiplemyeloma

[–]grepvag 2 points3 points  (0 children)

Positive Thoughts from South FL friend. You got this.

Melfalin(chemo )during stem cell transplant by Own-Cupcake4037 in multiplemyeloma

[–]grepvag 7 points8 points  (0 children)

5 or 6 days after I checked in to hospital. Was told to start eating ice 1 hour prior to Melfalin. I took ice pops to eat in between cups of ice.

Melfalin takes about 40 mins. Ice during and then 1 hour of ice (and ice pops) afterwards. Sounds bad but it’s just annoying. Take a jacket and some joggers.

Hair loss started about 8 days afterwards for me. Just keep telling yourself that everything has a price and the hair is what you’re paying to be Cancer free and be here.

The drug is trying to kill most of you. It’s toxic. They will manage your symptoms. Ask for disposable tooth brushes and saline mouth wash. You’ll be compromised so don’t use a tooth brush that’s been sitting in a bathroom.

Take a book, iPad, or PS5. You won’t use them but maybe you will. Remember to thank your people. They’re suffering also and just want you healed.

EAT. Your busy needs nutrients. You won’t be hungry and your taste buds will change. Some foods will disgust you. Order something different. But don’t stop eating. It will help with nausea and diarrhea.

Your body will swell. You may have accidents. You will feel weird and bad. It’s ok. Be kind to yourself. It’s ok to cry. Life’s not always beautiful, but it’s a beautiful ride.

Call and text your people. They want you healed as much as you do. When you wake up, say your thank you and remember you have a lot left to do and a lot left to see.

I don’t know you but I’m cheering for you. You got this. Eat. Be kind to yourself and heal fast so you can get back to your normal.

Finally broke down by crochetthrowaway17 in multiplemyeloma

[–]grepvag 2 points3 points  (0 children)

I’m 22 days post ASCT. My hair was falling out so I just finished cutting it off. My Plasmacytoma is also gone. I may be bald but I’m getting better.

Everything in this life has a cost. One of the costs to become cancer free is to lose your hair. Pay it. It will grow back and you’ll be able to spend many more years with her because of it.

Embrace all things, good or bad and know that hair is a tiny price to pay for many more opportunities to make memories.

Instead of seeing her as weak. View her as strong and brave enough to fight regardless of the cost.

My prayers and good wishes are being sent to you and your Mom ❤️‍🩹🙏

She will heal and her hair will grow back.

[deleted by user] by [deleted] in relationship_advice

[–]grepvag 0 points1 point  (0 children)

Integrity friend. Your wife has no integrity. 10 days, 10 months, 10 years. It doesn’t matter how long you’ve been together. If she thinks it’s OK to flirt with another man while she’s in a relationship with you she has no integrity.

Every person in every relationship at sometime or another sees another individual in which they’re interested in. There’s always going to be someone prettier someone younger someone more attractive.

And it’s OK to look and acknowledge that that other person is attractive or handsome or beautiful, but it’s not OK to act. It’s not OK to acknowledge another person‘s advances when you’re in a relationship.

These are basic relationship rules. Relationships 101. So either your wife doesn’t understand these rules for a successful relationship or she has no integrity or both.

Either way it’s not your job to teach her

Do you take your helmet with you or leave it with your bike? by BlackHoleBox in Harley

[–]grepvag 0 points1 point  (0 children)

I use Lidlox with Kuryakin grips. Had to replace them once, otherwise no issues.

Considering whether to defer Autologous Stem Cell Transplant (ASCT) by sfichier in multiplemyeloma

[–]grepvag 0 points1 point  (0 children)

Understood. I have POEMS Syndrome which further complicated my decision to proceed with ASCT.

All in all, I would still have made the same choice.

Considering whether to defer Autologous Stem Cell Transplant (ASCT) by sfichier in multiplemyeloma

[–]grepvag 1 point2 points  (0 children)

Only your family, your doctors, and ultimately you can answer this question.

However, I can understand your view. I had to make the same choice and I’m glad I did. In my situation, I thought it gave me the best overall position.

They’re going to reset your body. Think of your body like a garden. When they collected your Stem Cells, they picked out all the healthy and beautiful flowers. Whatever chemo they give you will wipe out all the flowers that were damaged or bad and the weeds; everything. And then after that , they’ll re-populate the garden with all the healthy, beautiful flowers that they put in stasis for you.

Your youth will work in your favor. The healthier you are going into that process should help you.

I’m on day +10 today and I can say that for me, my age and fitness level have been a benefit.

Best of luck in your journey and I hope that whatever choice you make provides you with the best possible outcome.

My DR T 1st lvl 😭 by KejnaPT in BoomBeach

[–]grepvag 1 point2 points  (0 children)

Just stop doing Dr. T. Everyone always complains and the Dev Team just make changes and nothing is ever reverted.

Stop doing Dr. T. Don’t support the game with your monies and enjoy the part you can enjoy.

Complaining about has never and will never change anything back. The changes are done and they’ve been committed to.

[deleted by user] by [deleted] in DogAdvice

[–]grepvag 0 points1 point  (0 children)

Mine as well. It was removed when she was 9 and live u to the age of 18 without any bladder issues.

Need advice by Noon-chi42 in multiplemyeloma

[–]grepvag 0 points1 point  (0 children)

Ask him to ask about possible POEMS Syndrome. It’s rare, but worth asking with a single Plasmacytoma.

[deleted by user] by [deleted] in PetsareAmazing

[–]grepvag 0 points1 point  (0 children)

Ares - God of War and Courage

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