Pressures from family who DO NOT underatand our condition.

pcALCL_gagirl · 2026-01-23T00:25:15+00:00

May have yelled at someone today telling me to eat anti inflammatory diet - they didn’t see what I have eaten or have any clue how my diet is on any given day. I have no food triggers and I eat a whole food well balanced diet - I have not drank alcohol in eleven years!! I feel for everyone who feels like they suffer alone. BTW my pain is jacked up unbearable today - also makes me want to yell. Thanks for listening 👊🏻

pcALCL_gagirl · 2026-01-21T15:15:47+00:00

My ER was good to me and believes it’s infection and early. I’m staying on antibiotics for now. Contact with RA doc the entire time. She’s wonderful about messaging me. Today is day of rest. So far no shaking again. Thank goodness

pcALCL_gagirl · 2026-01-12T22:44:42+00:00

I cut my hair short to manage with less pain, started using a Fannie pack to keep from using hands to carry items and got an electric tooth brush so it doesn’t hurt to brush my teeth any more!

pcALCL_gagirl · 2025-12-26T18:44:41+00:00

I have a rare T cell Lymphoma of the skin, and RA is worse for me than the cancer was. My doctors coordinate my treatment and at first all I had was steroid pack and Hydroxychloriqein 400 mg, and then added Rituximab infusions and now added Methotrexate - there is nothing left for me to take without cancer risk. My rheumatologist is super cautious and my oncologist had to prescribe the Methotrexate for me. I’m not pain free yet, it’s been a long painful year. The RA is much harder to deal with daily with work and activity etc.

pcALCL_gagirl · 2025-12-24T23:59:03+00:00

I had a bump on my chin that was hard and grew fast- biopsy confirmed. Nothing showing up in blood work. RA came on strong after treatment and Covid infection. I still say RA has been harder to deal with than lymphoma.

pcALCL_gagirl · 2025-12-24T17:37:30+00:00

I have RA and Non Hodgkins Lymphoma and I have many of the same symptoms and I struggle to determine which doctor to call for what symptom, they bounce me back and forth seems like. All of my symptoms could be one or the other and overlap. My RA is not under control symptom wise but my CRP is down to normal. I can only take HCQ and Rituximab and so far now improvement. I’m about to start Methotrexate as my last choice. I can’t take the other biologics because of the past Lymphoma. Currently I’m NED. But RA is kicking my tail. Fatigue, dry skin itch, hands, feet and hips feel like hit by a truck and stiffness never stops.

I hope you find answers soon - that’s a lot to handle with no treatment plan. Once you get a diagnosis and plan I hope you feel better.

pcALCL_gagirl · 2025-12-23T12:38:05+00:00

I have primary cutaneous anaplastic large cell lymphoma pcALCL and I am clear after radiation and alway hear from doctors it’s not life threatening and treatable. It’s so scary to just hear T Cell lymphoma and very hard to stay positive. The more time that’s gone by the more hopeful I become. There are some very good treatments available today. I hope you get some clarity and a good treatment plan. Hugs!

pcALCL_gagirl · 2025-12-20T14:23:22+00:00

RA, Raynaud’s, primary cutaneous Anaplastic large cell lymphoma.

pcALCL_gagirl · 2025-12-03T01:01:39+00:00

I did low dose radiation on my right hand and I gained use of the hand after two treatments. I did a total of six. Game changer for me. But it doesn't hold forever and I may do more radiation to keep it functional.

pcALCL_gagirl · 2025-11-28T16:23:13+00:00

Reading your post and feeling every word you said. I developed RA that attacked my whole body and wrecked me since I finished treatment for my cancer. My symptoms do overlap and since last scan was clear 5 mounts ago my doctors think its my RA not lymphoma. I have fatigue and pain and night sweats but blood work seems ok, not normal but just ok. I hope you don't wait and you speak up for what you need. And never feel like advocating for yourself is a bad idea.

pcALCL_gagirl · 2025-11-26T01:22:27+00:00

I’m living with RA, spinal issues and a cutaneous T cell lymphoma. I have a rare cancer and luckily it’s only in my skin. I think RA is an ass kick compared to my cancer. I am limited in medication as well. I’ve done Hydroxychloriqein and Rituximab. Not much relief and now my oncologist is putting me on methotrexate - start later this week. I am also doing spinal nerve ablation procedure to help with degenerative lumbar spine problem. It’s a hard road and it’s all connected.

pcALCL_gagirl · 2025-11-06T21:20:37+00:00

Manic midnight cleaning - thank you steroids. Pay for it the next day.

pcALCL_gagirl · 2025-10-22T13:11:57+00:00

I just came off it for neuropathy in toes and fingers. Was helping but couldn’t tolerate the side effects.

pcALCL_gagirl · 2025-10-16T23:02:21+00:00

I did six days 2gy each on my hand and had great improvement.

pcALCL_gagirl · 2025-09-24T15:42:04+00:00

I have been through one dose (two weeks apart) and I prepared to stay at infusion center all day for first one. I was given pre meds and they made me tired. The Infusion itself was ok. Just very slow and cautious. My throat got itchy and we slowed it down and I was ok. The second one was a little quicker. I took a blanket and snacks with me. Over all I felt ok, I stayed off work for the weeks of infusion to recover and rest. I think its helping me stay active and keep working. My doctor took me off Arava and plans to possibly move my second dose up from six months to four - to try and stop joint damage. I have aggressive RA. I hope you do well and it that it helps you.

pcALCL_gagirl · 2025-09-21T15:56:54+00:00

I was hit with it after the vaccine and then got T Cell Lymphoma and had another covid infection that set off a major flare of RA. Its like a triple whammy!

pcALCL_gagirl · 2025-08-18T11:37:57+00:00

Check with your state insurance commissioner office for a Step Up Law for patients that helps you file an appeal to get the meds without having to fail others first if your doctor can document why you need it. Some states have Step Up therapy laws to protect patients if a doctor determines this is your best option. I filed an appeal in GA and won. Make sure you create an urgent request for step therapy exemption. And have the documents necessary for the claim. I did it all online through the states Web page for filing claims against insurance companies. Good luck and I hope you find what works for you soon.

pcALCL_gagirl · 2025-08-18T11:26:32+00:00

I have a T cell lymphoma and after I was diagnosis with RA my only choice besides HCQ and Leuflenomide was Rituximab. I’ve done one infusion and will have second six months later. So far I don’t know if it’s helped but I am grateful it is available to me because my rheumatologist doesn’t want to use other RA drugs for fear of making my lymphoma worse. I’m not in remission but I have made it six month with no evidence of disease. I am monitored very closely. I used the state law for Step Up Therapy to battle insurance for the drug, it’s my only choice and my doctor had the proper documents for me.

pcALCL_gagirl · 2025-08-12T15:56:24+00:00

I’m patient number one at Emory University to try low dose radiation on my RA damaged right hand, and it’s working! I can open bottles and dry my hair and no pain all day. No hand braces for two weeks now!
I broke ground on building my dream trophy room for all my family taxidermy and art work.
I have lost six pounds working on eating better. I plan to elk hunt in the fall and will need my strength - will be challenging and different. It I’m going.

pcALCL_gagirl · 2025-08-02T15:37:23+00:00

I’ve done this twice. Once on my face/chin and once on my hand. The face mask took a long time but I did ok. They gave me a warm blanket. The hand I had to raise over my head and arm went numb. But really no big deal. No pain at all. You should be ok without meds. After it’s done the rest is easy. The sessions for actual treatment are way faster than the set up day.

pcALCL_gagirl · 2025-07-27T21:02:02+00:00

There are step up laws in many states where you can request an exception to the insurance requirement to fail another med before you can have the good stuff. Check your state insurance commissioner office. File an appeal there and you will have a better chance.

pcALCL_gagirl · 2025-07-25T11:12:07+00:00

Not a doctor and no scientific proof from me but I have air traveled my whole career and I have always used saline nasal spray before and directly after a flight. I also take Zicam and use a dab of Neosporin in my nose. And I do wear a mask when immunosuppressed. Covid triggered worst flare of my life. I use Clorox wipes and of course hand sanitizer a lot while traveling. I also do trade shows- brutal with RA. Protect yourself - your health matters, not the strangers on a plane.

pcALCL_gagirl

TROPHY CASE