Patients Mantle cell Lymphoma
Topic of the discussion
Posted on 5/24/20 7:32 PM
New Diagnosed ...scared,whats next
Beginning of the discussion - 5/25/20Newly diagnosed - What should I expect? https://www.carenity.us/forum/mantle-cell-lymphoma/living-with-lymphoma/watch-and-wait-1955
Posted on 5/25/20 7:00 PM
@Michelle413 Hello Michelle, thank you for starting this discussion. I'm sorry you're feeling scared, getting a new diagnosis can be stressful, especially when it's cancer. Please know that the Carenity community is here to support you! We have a thread here in our group where people are introducing themselves and sharing their diagnoses, feel free to introduce yourself! I'll link it here: What is your lymphoma diagnosis story? Let's share!
Let me tag some members who may be able to share their experience and advice with you.
Hello everyone, how are you doing today? What has your experience been like with lymphoma? How were you diagnosed? What treatments have you tried? How are you doing today? What should Michelle expect for the next steps in her cancer journey? Feel free to share here!
@Driggs09 @Hind97 @moshiro @Jacobrock25 @Cposter63 @Nitahiggins @Tuesday112 @Sammygirl @Jtinkshell @Gary'sgirl @Char26 @thepatientstory @Chrisopher @mrsmrcharl @suzie1 @Glenda8080 @Mbenita @slrudgers2
Posted on 5/25/20 8:05 PM
Hi Michelle, I have just written you 2 long notes over the last hour, the site keeps rebooting (reloading) to the home sign in screen. Last one written on my laptop but didn't matter. I can't do this all over again at the moment and ,I:m sorry. I have to send before site reloads and blows this away again. Quickly? Treatment, especially chemo is nothing like it once was. In fact I began to feel much better within 2 weeks of treatment. Was sick for a while before I'd started treatment. Good luck, there's more I'd like to share with you but not possible until this site is fixed. Courtney's on it, should work right soon I think. Take care, okay?
Posted on 5/25/20 8:29 PM
Thank you so much Daniel.for taking time Michelle. .
Posted on 5/25/20 8:32 PM
I'll be looking for the notes..thank you so much
Posted on 5/26/20 5:32 AM
My name is Hind, I've been diagnosed with Hodgkin's lymphoma Nov 2019. As a 23 year old battling a disease with such reputation, It was hard at first, since I was just about to start my 4th year in medical school, so close to graduation. However, before being diagnosed and starting the treatment I was literally fighting to stay alive. with my hemoglobin level at 6, oxygen saturation drops to 80/90 if not on oxygen support, recurrent fevers (I'm talking 2-3 episodes a day). I had a very disturbing cough which a year later turns out that it was the cause of my mysterious rib pain back then, a rib fracture. Those are just highlights of what my symptoms were. I've been to multiple hospitals, I've done numerous diagnostic procedures, some of which had my life on the line. A year later, I got my correct diagnosis after 2 misdiagnosis. I cried, but that was the only time I cried because I was a cancer patient. I let it all out and gathered myself again realized no one can save me but myself. I had to pause school, leave my family and friends behind and travel across the globe in order to insure best care when it comes to cancer treatment. I'm scheduled 6 rounds of ABVD chemotherapy. I've just finished my 4th round, 2 more to go hopefully. I've done my first follow up scan 2 months ago and my body thankfully responded very well to the treatment. Keeping my fingers crossed for the next scan in 10 days! Treatment isn't the easiest when it comes to the side effects, extreme fatigue, nauseousness, malaise, bone ache; but it usually goes away 4-5 days post chemo session. When it comes to my symptoms, I feel much better, I've been off oxygen support after my first session of chemo, I can exercise again, my hemoglobin has reached 12.4 which means I'm no longer anemic. As much as we don't really admire the concept of chemotherapy, we should embrace it, and embrace our bodies who are trying so hard to keep us alive. we should give our body love and stand by its side through this hard time so that both of us come out of this even stronger. I tried to cover as much as I can but if i missed anything or you have any question please don't hesitate. even if you just need someone to talk to I'm here.
Posted on 5/26/20 2:10 PM
Thanks for the post Hind, my diagnosis was a long time coming as well. Nobody' s fault really, it just took a MD who had familiarity with my condition. Aside from the big improvement after beginning chemo, I very much look forward to seeing the staff there. My nurse is always the same, she,s bright and has s terrific sense of humor, is genuinely funny and I adore her. I'm going the 6 month chemo run so people in the infusion room are becoming familiar faces now. Funny to say that I look forward to going there but true, it's become a part of my social life.. Good luck with things Hind.
Posted on 5/28/20 5:46 PM
Thank you for sharing. Positive tjoughts❤
Posted on 5/28/20 10:40 PM
I've earned my assiduous rating on this site .. Does this mean I get a gift card or something in the mail? I kid!
Posted on 5/30/20 1:30 PM
Hi folks I just thought I'd share a general thought.. I'm a long way into chemo now I'm feeling quite s lot better also.. I've lined up some counseling because I m feeling a little depressed lately and this is not like me at all. The problem? I feeling well enough to think! Not kidding, for months my concern was getting through to another day or hour. I spend too much time on sites like this. In a strange town I really don't know anybody. I want to work. With chemo I feel a little overwhelmed just about moving in a few days, trying to line up some moving transportation at the moment.. Sure it all works out, I'll bribe a neighbor with a truck when I get back home from my morning bike ride. Always has worked in the past, I ve moved around a lot in my life.. It takes a little time to work out having a little too much time on my hands I think, never had this problem before! I'd love to hear any thoughts from you guys Thanks in advance..