Living with Lymphoma

Has anyone here dealt with this illness before? I'm looking for info on symptoms, the diagnosis process, chemo, survival rates, and anything else... If you have a reliable link, please share it. Thanks.

P.S.

It’s not about me.

There's a ton of info out there on this. Symptoms vary like crazy from person to person, too. Here's a link for you. You'll probably dig up even more if you just hit up www.google.com and search for Lymphoma...

Thanks, Blondie. 🙂 Yeah, I’ve already done some digging on Google and found quite a bit of info. (I'm still not sure if we're looking at Hodgkin or Non-Hodgkin yet, so I'll be more specific later). I just wanted to reach out here to anyone familiar with the disease to see if you could share your experiences or maybe some reliable links...

Take a look at these pages:

Hodgkin:
http://health.yahoo.com/health/encyc.../000580/0.html

Non-Hodgkin:
http://health.yahoo.com/health/encyc.../000581/0.html
If you scroll down on both those links, you'll find a section for "treatment"—that's where they go over the actual medical options and what to expect long-term...

Also, check out www.cancer.org and just search specifically under the lymphoma heading...

Thanks, Casey Palmer5. I had my consultation today. It's not 100% certain yet that my loved one actually has Lymphoma, but it's looking very likely. Luckily, the doctor believes the chances for remission are incredibly high—maybe even 99%. That's really encouraging 🙂 👍

A few months back, my dad was diagnosed with Non-Hodgkin lymphoma. I can’t offer you much in the way of shared experience, though—my father is a difficult man. He refuses to let anyone else speak with his doctors, he won't take advice from anyone, and he actually refuses to even say the name of the disease out loud or discuss the treatment plan.

In any case, there is a Patient advocacy group out there; I don't have their number on me right now, but if you need it, I can track it down and send it over. I believe they offer free medical consultations about once a month through the Association.

My dad is undergoing chemotherapy—which he insists on calling an "infusion" because he refuses to admit it's chemo—and he’s finished three rounds so far. He has handled them remarkably well, almost entirely without nausea. The protocol he’s on involves going into the hospital for one day of treatment, followed by five days at home taking oral cytostatics, so he isn't tethered to the hospital most of the time. His doctor mentioned the possibility of some newer supplemental drugs alongside the standard chemo, but under Medicare, those are only covered for one very specific type of Non-Hodgkin lymphoma; otherwise, the patient is stuck paying for them out of pocket. These drugs are outrageously expensive, and my father isn't even willing to entertain the idea of buying them.

That’s really all I can tell you, though I would suggest checking out the alt-med forums; you can usually find a physician there who is willing to answer just about anything.

Thanks so much, Betty Bennett10. 🙂 I really hope your dad starts feeling better soon. Since I'm not in the States, I can't reach out to the Patient advocacy group, but I appreciate the info regardless. My friend is heading in for a biopsy this Monday, so once I know more, I'll post an update here. She’s taking the diagnosis surprisingly well (even though nothing is official yet). It helps that her doctor mentioned that among all types of cancer, Lymphoma is one of the most treatable...

If you aren't living here in the States, these "new" treatments will likely be much easier for your friend to access—and there's a good chance they'll even be covered by Medicare, assuming we're actually talking about lymphoma. The specific drug my father was prescribed is called Rituxan, which is manufactured by Roche. There is a wealth of information regarding this medication available on their website if you feel the need to dig into the details.

Thanks again, Betty Bennett10. We won't know the specific type of Lymphoma until sometime Wednesday or Thursday...

I’d love to help out if I can! Honestly, I’m crossing my fingers that whatever your friend is dealing with isn't a lymphoma diagnosis. But, if it turns out to be that, I just wanted to share what my own experience has been like over the last six months. My husband was diagnosed with this disease, and he’s been in treatment for half a year now. He actually just finished his seventh round of chemo today. He’s handling it incredibly well—aside from a few minor side effects—and the doctors are really happy with his progress. Personally, I’m trying to connect with people who went through this a while back, maybe two, three, or even five years ago, since they say you're officially considered in remission after that five-year mark. If there's anything else specific you need to know, just ask and I'll do my best to help. Likewise, if anyone has more insight to share with me, I’m all ears. Sending you lots of luck and thanks in advance!

Bob, thanks so much for getting back to me 🙂 I’m really glad to hear your husband is handling the treatments well.

A friend of mine went in for her biopsy today. Initial results suggest it is indeed Lymphoma, but we won't have the final diagnosis for another two or three days. Once we know, I'll post more details about the specific subtype and the treatment plan. If it turns out to be the same subtype, maybe we can compare notes...

Here's another link. A friend of mine actually has Hodgkin, not Non-Hodgkin like we thought... Bob, shoot me a DM if you want to chat.

http://www.oncologychannel.com/hodgkins/facts.shtml

From what I understand, HD actually has a better prognosis than Non-Hodgkin...
What kind of symptoms were you seeing, and how long did they last?

She’s been dealing with symptoms similar to pneumonia for a few months now. Fever, shortness of breath... She was also losing weight, despite eating huge amounts. It looks like it might be Nodular Sclerosis Hodgkin lymphoma. We're waiting to see what the oncologist says today.

Good luck and stay positive! Keeping a good mindset is honestly half the battle when you're fighting to get well.

I actually found this little lump on my neck recently. Even though the doctors brushed it off and told me it was nothing to worry about, I still found myself counting down the days until my next appointment... 😢

It’s crazy how much a moment like that can shift your whole perspective on life.

Linda Flores2 said:She dealt with symptoms that felt just like pneumonia for several months—fever, shortness of breath, the whole thing. On top of that, she was dropping weight despite eating massive amounts of food. It looks like we’re dealing with Nodular Sclerosis type Hodgkin. We’re just waiting to see what the oncologist tells us today.

My father went through something very similar; they initially sent him straight to the pulmonology department.

I’ve got the same diagnosis. Hodgkin, nodular sclerosis. I've been in remission for five years now, ever since I finished treatment.
Ask me anything if you need info.

Linda Flores2 said:Here is another link for you. It turns out my friend has Hodgkin, not Non-Hodgkin like we all thought. Bob, shoot me a private message if you want to chat.

http://www.oncologychannel.com/hodgkins/facts.shtml

Dear,
I didn't see your post until just now, but I wanted to reach out. I am so relieved to hear your friend doesn't have Non-Hodgkin. Honestly, every night I lie in bed praying to God that nobody has to suffer from any kind of illness!
As for us, my husband is doing pretty well—he’s handling the treatments quite well. He just finished his seventh round and they are getting him ready for an autologous stem cell transplant, which they plan to do after the eighth round. It’s definitely not easy, but since he’s made it this far, I know he can handle this too. Looking at everything going on in the world, it feels like these kinds of illnesses are often tied to the chaos of conflict. It makes you worry about what the future holds with everything happening over in the Arabian Peninsula and beyond...
Wishing you the very best. Please don't hesitate to reach out again if you need anything; I'd be happy to help.

Warmly, Bob

analogmaker34 said:I have the same diagnosis. Hodgkin, nodular sclerosis. I’ve been in remission for five years now, ever since I finished treatment.
Ask me anything if you need...

Congrats! 🙂 👍 I have a few questions. Feel free to answer here or just send a DM if that's easier. At what stage was it caught? How long did it take from diagnosis to remission? Was it just chemo, or a combo with radiation? What kind of side effects did you deal with? Thanks. 🙂

I found out I was sick after feeling a lump on my neck. It started with an ultrasound and blood work, then things moved fast—CT scans, biopsies, scintigraphy... all leading to the final diagnosis. It turned out to be stage IIa, so not exactly catching it at the very beginning.
I did six months of chemo—six cycles total—with only one break because my white blood cell count tanked. After that, I had radiation for 25 days straight.
The side effects were the usual: vomiting, nausea, exhaustion. Money was tight, so I ended up rationing my Zofran since the hospital never seemed to have any in stock. My immune system was shot; every virus and bacteria under the sun decided to hit me at once.
I also had issues with the oral medications I was taking.
Lost all my hair. It eventually grew back.
Despite the mess, I think I handled it pretty well. I stayed on top of vitamins, drank various teas, beet and carrot juices, and overhauled my diet.
Now, I just go in for checkups twice a year.
Sometimes the paranoia kicks in. I’ll start hunting for new lumps or convinced myself I’ve developed a hundred different symptoms. But honestly, I’m just glad it’s behind me.
I'm happy to help your friend if she has more questions.