Posts by Dana Baker37

Just went through my mom's discharge papers from March 2nd, 2009. To give some context: she was discharged on January 8th, 2009, with a diagnosis of Hodgkin's disease, CD34+ cell collection. From February 9th to February 27th, 2009, she was in the ICU for an autologous peripheral stem cell transplant. After the BEAM chemotherapy conditioning regimen—which included Carmustine (477 mg in 500 ml IV on day 6), Etoposide (318 mg in 250 ml IV from days 5 to 2), Cytarabine (2x 318 mg in 250 ml IV), and Melfalan (223 mg IV on day 1)—they did the peripheral stem cell reinfusion on February 16th. The post-chemo period was messy, dealing with pancytopenia complicated by fever and mucositis. No significant pathogens showed up in the micro tests, and the piperacillin/tazobactam treatment helped clear things up and bring the fever down. Because of neutropenia, she got daily Filgrastim (600 mcg) for 8 days. She also needed several red blood cell transfusions (520 ml) and about 22 doses of platelets due to anemia and thrombocytopenia. She was discharged in good condition 17 days after the transplant with the diagnosis of Hodgkin's disease C81
Autologous bone marrow transplant (PBSCT) at 94.8%
What I'm trying to figure out is: does a change in the diagnosis code mean her condition is better or worse? She’s heading back to the hospital in early April for more testing to get a factual look at where things stand. Thanks in advance, and sorry for the long-winded post!

Michael Newman3 said:Rituxan (Rituximab) is used for treating certain types of lymphoma. It works pretty well at wiping out Non-Hodgkin Lymphoma when paired with chemo. It’s covered by Medicare, provided the hospital’s medical board approves it based on the hematologist's recommendation. I know some patients end up paying out of pocket—I think I heard someone mention a cost around $4333.
I had my treatment at Mayo Clinic.
Best,

Thanks!

Michael Newman3 said:Melissa Moore39, things don't always look as bleak as they do at the start. A year ago, I was diagnosed with Non-Hodgkin Lymphoma—Stage IV, the worst kind. After six rounds of chemo and 8 Rituxan (a targeted therapy), the disease backed off. Now I’m just living my life normally, hoping it stays away, which is what my doctor thinks will happen.
Just stay brave and keep a strong spirit while fighting this stuff.

Hey, how do you get ahold of that medication? And if you don't mind me asking, where did you go for treatment?

brisksurfer said:Finally, some actual good news to bring to this thread! And I mean incredibly good news!!!
I already mentioned that during his follow-up CT scan, they thought a new primary tumor had appeared on his bronchi with lung metastases... Well, all the tests are finally done and the biopsy results came back. Turns out, there is no tumor at all!!!!! 🙂🙂🙂🙂🎉
They found he has an Escherichia coli infection that flared up after his throat surgery. He just needs antibiotics for that and a follow-up X-ray in two months just to be safe.

I can't even describe how happy I am!!! 😍 It feels like three tons have been lifted off my shoulders. Honestly, I just want to 🙂 scream at all the doctors who scared us half to death... I can't even put into words the shock I went through...

This is truly BEAUTIFUL news 👋
I've read this several times and honestly felt your joy personally, because that's exactly how I'm picturing the outcome of my mom's treatment. After we get through six weeks of hospitalization followed by a month of recovery, we'll do more tests to see where things actually stand. That's exactly how I imagine the situation—that everything will be fine and we'll throw a massive party! 🙂
My husband had to rush out for an emergency meeting in NYC today, so he'll go visit her again later. Kisses to everyone and hang in there, we're stronger together! 🙂
Maria Fox, thank you and just keep moving forward!

Amy Hayes28 said:My dad passed away. He's gone for good.😢
Thank you Jane and everyone else who reached out to help us through this.

My deepest condolences to you and your family.😢
Another star in the sky tonight...
Visited Mom today. Climbing up to the hematology ward, my knees felt shaky and my head was spinning with a million different thoughts. The nurse met us at the door—my husband came along too—wearing masks and gowns since Mom is in isolation. Honestly, I’m just so glad I got to see her. She’s holding up incredibly well; she still manages to blow me away, even after all this time. Once the nurse finished sterilizing everything I brought, they actually brought us some tape so we could stick my daughter's drawings on the wall. It was such a sweet moment. We just sat and spent time together; I really needed that. She’s facing another brutal week ahead with the stem cell transplant. They’ve prepped her for potential complications, and I’m just praying to God that He stays by her side so she can win this fight, too. Sending love to everyone standing by us! 🙂

Maria Fox said:Dana Baker37, hang in there 🙂

My mom finished her chemo sessions today. She’s happy, I’m relieved. Now we just have to hope for good news down the road. 🙂

thanks Maria Fox 🙂
So glad to hear about your mom—and you too. Keeping you both in my thoughts for what comes next. 👍
I'm having a good day myself because they cleared me to visit my mom (heading there tomorrow). It’ll be pretty brief, but whatever. Just enough to see her and drop off some essentials. Honestly though, I have to give credit to the doctors and the staff at Mercury Hospital. They really look after her and stay on top of everything. 👍
Best to everyone!

Nancy Hernandez43 said:Angela Wright gave you some solid advice!

Believe me, I’m right there with you. Every single time my mom heads off to the Mayo Clinic for chemo, I just feel... empty. Stunned. Like I’ve been transported to some other dimension. I honestly don't know what to do with myself because it feels like she could be gone indefinitely every single time. You can stay in a foreign country for two days, three days... even weeks. Or you might just never come back at all. Communication is basically non-existent. That’s easily my biggest trigger. Honestly, I’ll be walking down the street, laughing my head off, and then a second later, I'm breaking down in tears. By the time I get home, I just look at myself and think, "What an idiot." Because let's face it—tears aren't going to fix anything for anyone.

So... just hang in there and don't let them get to you. Keep the kids busy. Play more, actually get in on their level, and they’ll stop asking a million questions.

It’ll pass in four to six weeks. Just like that. Even if it feels like an eternity right now. Sending you a huge hug—really hoping that fear starts to fade soon and your mom finds her strength again. Hang in there.

Like I said before, this is my absolute worst nightmare, but I know I have to stay positive. We’re talking once a day now. It’s a 24-hour chemo cycle, and they had to put in a catheter because her veins are basically shot. Honestly? Just hearing her voice is enough for me. As long as I hear that, I'm good. She sounded strong today. This way of communicating is actually much better—she reaches out when she actually has the energy. Last time, I almost lost it and caused a scene at the hospital because I called her right while she was receiving blood, and she felt so sick she sounded like she was dying. When my nurse explained that it was just "part of the procedure" and that Mom was going to be okay, I finally calmed down. Thanks for the support and the good vibes. It really means a lot and helps me keep going.

Angela Wright said:Start getting ready for when they finally come home. Plan everything out—book those massages, schedule a pedicure, hit the shops, and pick up little things just to make them smile. Just shower them with small gestures so they feel taken care of the second they walk through the door.
It’s hard to know for sure. Just stay strong and have faith... you've got plenty of reasons to believe things will work out.

Thanks....that’s honestly such great advice. It'll be good for both of us—just some quality time for the two of us. Thanks again...

Hey everyone...
My mom’s been fighting lymphoma for two years now. She headed back to the hospital in New York City yesterday for what looks like a 4-6 week stay. This week, she starts chemo that’s three times stronger than the last round, which was already three times stronger than the one before that. Then, next week, they’re doing a stem cell transplant using the cells they harvested during her last stay. She’s in total isolation right now. I can't visit, and phone calls are basically non-existent because she asked me to just wait until she actually has the strength to talk. Honestly? I feel numb, useless, and terrified. She’s handling it all with this incredible stoicism—she’s tough as nails—but we’ve had better days and worse ones. This time, though, it feels different. It feels like the final stand. Either this works, or it doesn't. I can't let myself spiral, mostly for her sake, but also for my kids. They start firing off a thousand questions the second they see me cry, and right now, it's just so hard...