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Hi, I'm new here. . .

ThisisLife's picture
ThisisLife
Posts: 98
Joined: Jul 2012

Hi everyone,
Aaron invited me over from another board that we post on. He said that you were a great bunch of people.

I'm 54, and was diagnosed at the end of June with NSHL-IIIA(S). I'm doing six cycles of ABVD. Had the first one today and it went very well. Now just trying to drink lots and stay on top of the meds.

Looking forward to getting to know everyone!

Sharlene

anliperez915's picture
anliperez915
Posts: 755
Joined: Sep 2011

Hi Sharlene,
Welcome to the group, I have a different type than yours mine is Splenic Marginal Zone NHL. I'm currently in treatment just started yesterday again after 6 mo. brake. I'm doing better now then when I started, I'm slowly responding to treatment. I was stage 4 with tumors in spleen, liver and bone marrow involvement. On my last CT I was told that my spleen looked a little swollen and that some nodes had not changed but other nodes did get smaller. I hope that by the end of this treatment I will reach remission. I'm 36, married with three kids ranging from 18, 14, and 4 yrs old. I hope that you do great in your treatment and that you respond to it. Take care of yourself and I really do hope that you stay with us.

Sincerely,
Liz

jimwins's picture
jimwins
Posts: 2038
Joined: Aug 2011

Hey Sharlene!

Welcome to the site. You'll find great and supportive folks here.
Who's Aaron ? (big wink)

Congrats on getting the first cycle out of the way. It will get
easier as you learn what to expect. I had stage 2 Diffuse Large B Cell
Lymphoma (small intestine and mesentery). I had six cycles of R-EPOCH with
a surgery to remove a small section of my small intestine. So far I'm doing
well - 8 months complete remission.

Please feel free to come here and share with us.

Warm hugs,

Jim

COBRA666's picture
COBRA666
Posts: 2418
Joined: May 2010

Sharlene,
Don't believe nothing Aaron says. We been trying to get rid of him,but he just won't go. So what can we do,ya know!!!!.....Just kidding you. Aaron is a great guy and glad he invited you to join us. He's right,we do have a great bunch of people here. We like to joke as much as possible,but sometimes things really get serious. You'll see that as you read some of the post. We try to be a happy family and share our fears and joys with each other. Glad you stopped in and feel free to post whenever you feel up to it.I was diagnosed with Follicular NHL in 2010 and currently in remission and hope to stay that way. Its no picnic but we will get thru it. John

allmost60's picture
allmost60
Posts: 3167
Joined: Jul 2010

Hi Sharlene,
John said it all...(except the part about Aaron)lol :) I'm glad Aaron told you about us. I joined the group in July of 2010 and found great comfort, love and support from everyone here. I have Follicular NHL-stage3-grade2-typeA and considered stable. I never reached remission, but I think I'm pretty darn close. My about me page will tell you more about my treatments,thoughts etc. Hope to hear from you often and "Good luck" with your treatments. Take things one day at a time and keep stress at a minimum. Best wishes...Sue (age 61)

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 1101
Joined: May 2012

Sharlene,

Welcome from me as well. I had HL also, but a different strain. I did 12 cycles of r-abvd, and have been in cr for 3 years.

Are you getting Rituxan with your other drugs ? I actually was diagnosed at 53, and am 56 now, so our age situation was almost exactly the same. I guess what I might have the most to share with you is a familiarity with abvd and its side-effects; I have been a sort of abvd side-effects poster boy since around day one.

Bless your journey, but know that the road is more full of potholes than the I-95 Bypass around New York City.

max

vinny59's picture
vinny59
Posts: 1030
Joined: Nov 2006

Hi Sharlene and welcome, one down only five to go! I always try to look at the positive, LOL Vinny

onlytoday's picture
onlytoday
Posts: 586
Joined: Jun 2010

Sharlene,

Glad you found us (thru Aaron)- the people here are all very supportive and just a great group.

I have Nodal Marginal Zone NHL IV -Dx 05/10- had 4 rounds of Rituxan in 2010. Presently I am half-way home - getting Treanda every 28 days-3 treatments to go. No big deal- some sickness after but seems to be doing a pretty good job so far. They are testing Ofatumumab in the hospital this Tuesday to see if they can add it to the mix to give me a longer Remission.

You will see everyone's story is different. The treatments are very specific to each person's diagnosis. No cookie-cutter treatment plans here!

Hoping that your treatment goes easy and you find Remission!!!

ThisisLife's picture
ThisisLife
Posts: 98
Joined: Jul 2012

Thanks for the warm welcome everyone.

I can't remember who asked what protocol I was on. . . .It's just ABVD with prednisone. No ritux???? (sorry can't remember how to spell it). Sheesh, two can't remembers in that sentence. Surely chemo brain doesn't kick in that quickly! I must be getting old. LOL

Well, I made it through the first day without incident. I went to bed at about 10:30 and was pretty tired. Slept for about an hour before I was woken up by the dog! Then I was antsy and couldn't get back to sleep. I assume it was the after effects of the prednisone. Anyway, I eventually found a comfy position and went back to sleep. Woke up at 2:30 to take an anti-nausea then back to sleep until 8:30, another anti-nausea and back to sleep until 10. I know it sounds weird, but I actually feel like I am able to take deeper breaths this morning. (I have quite a large mediastinal mass). Also my axillary nodes seem quite a bit smaller. Is that even possible this quickly? Probably my imagination, but it makes me feel better to think they might be. LOL

I definitely have more energy this morning than I have had in a long time. I'm usually just dragging myself out of bed in the morning! Having said that, I also know not to get crazy and overdo it. I'm just going to hang out and probably paint today. I'm an artist and have a couple of shows coming up that I would like to have work ready to enter.

Aaron's picture
Aaron
Posts: 238
Joined: Jun 2012

I'm glad to see your feeling good today, I knew you'd receive a very warm welcome from the great people here. Stay hydrated my friend and enjoy some nice painting time. I've been dealing with on again off again fevers for the last 24 hrs. Went to urgen care last night and they ran my counts and didn't find anything alarming so they sent me home. Take care. Aaron

ThisisLife's picture
ThisisLife
Posts: 98
Joined: Jul 2012

Gosh Aaron, I'm sorry to hear that you are having such a rough time on this first round. I hope that your fevers stop soon!!!

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 1101
Joined: May 2012

Rituxan is spelled about ten different ways, so you almost can't spell it "wrong!"

Real chemo brain is when you can't remember to ask anyone about forgetfulness...

max

AngeH's picture
AngeH
Posts: 15
Joined: Jul 2012

I just found this site while doing a search for more additional info on the BiovaxID vaccine for follicular NHL. Since my doc and I will be talking about it more in a week, I wanted to see if there had been any other new information on it, and I found this site. Really liked what I saw, so I joined. You guys seem like a really nice bunch. I'm not at my computer nearly as much as I had been pre-cancer, which is a good thing! I've been keeping myself on the go since my last round in May. Even before that round was complete, I just could not stay put and did a spontaneous overnight trip to Gettysburg with my daughter, even fed animals at the zoo on the way up. I went back to work full time on July 11th, and I plan on going to an all day heavy metal fest/concert with my daughter and her boyfriend tomorrow. I got the giddyap and go's!

ThisisLife's picture
ThisisLife
Posts: 98
Joined: Jul 2012

Hi Ange,

When were you diagnosed. Have fun at your concert!

AngeH's picture
AngeH
Posts: 15
Joined: Jul 2012

Yup, it was just this past December 2011 when the oncologist told me I have lymphoma. December 17th. 10 Days later was the 1st surgical biopsy to find out what kind, and then I had a second biopsy (lower) to determine the higher grade/type that was found lower below my diaphragm.

I'm so excited to get out there - I just KNOW it's going to be a fun day! Thanks!!

veedub's picture
veedub
Posts: 42
Joined: Jul 2012

hi--

i'm 74, and just got diagnosed a week ago (but i figured out something was wrong when the lab tests showed my LDH levels up through the roof). so i have a mixture of follicular and large B-cell diffuse lymphomas, stage 3, and i start chemotherapy on august 6.

the oncologist wasn't exactly sanguine, but he says my chances of complete remission are 65%, so that sounds good. never having done any of this before, i am trying to prepare myself for the side-effects of chemo (R-CHOP, i believe).

i am fortunate to live in san francisco,california, where cannabis is legal (at least at the state level), so i got my medical card and just visited the cannabis club to see what to use. i got a couple of bottles of tincture, which are only 10% THC and 90% CBD, so are recommended for nausea. i know i will get nausea, because i am very prone to motion-sickness, so i might as well be prepared. some friends who are experienced recommended tinctures, because smoking is carcinogenic and i might not be able to eat. i did invest in some cannabis-laced popcorn to help me sleep at night-- popcorn is such a cool idea i just had to try it ;)

i'm very happy that i have a good HMO, kaiser permanente, and won't have to go running from doctor to doctor to get the things i need. and i have an excellent support group-- my husband made a website for me though [Lotsa] Helping Hands, which is a really efficient way of stating what help i need when i need it. there's a calendar for me to post any time i need a ride or some soup or whatever. right now i am researching henna artists. i want to get a henna crown when i lose my hair, and rock the bald look.

so this is going to be an very interesting time for both me and my husband. i feel as if i'm preparing to climb Mt. Everest or compete in the Olympic Games. i have sherpas and coaches galore.

going for the gold,

veedub

jimwins's picture
jimwins
Posts: 2038
Joined: Aug 2011

Welcome veedub :). You are so cool.
I read your profile. You'll find wonderful and supportive
folks here. I know you're going to be a colorful and maybe
spicy addition to the group here.

I want pictures when you get your henna crown ;).

Hugs and warm and positive thoughts coming your way,

Jim

AngeH's picture
AngeH
Posts: 15
Joined: Jul 2012

It sounds like you are preparing to climb Mt Everest. LOL!! But, it's kinda like that. Before my hair fell out, I wanted to do a lime green mohawk, but just didn't get to. When it did start to fall out, it just really fell out. First, I went and got a buzz cut (my hair was thick and past my butt!), and two showers later I was hairless. If it had hung in there just a bit longer, I really would have done the mohawk and colors!! Ah well...

Now, it just more or less looks like I just have a short buzz cut.

I just plain dealt with the nausea as best I could. The doc did give me meds for it, but it didn't work real well unless I was really severely sick, and even then I had to be careful because it causes more constipation. The constipation was THE worst!! I even had a bowel blockage and ended up in the emergency room just from the first round. It's a trip, dude! I learned my lesson well - lots and lots and lots of water, Collace, lactulose (sp>) prescriptions, any and all anti-constipation meds and softeners. I found that when I did get nausea, and with the mouth sores, ice cold water and just keeping my mouth clean was the best. And of course, plenty of rest. Eat what you want, what you can tollerate the minute you want it. At least in my experience, if I had waited, I found I no longer wanted it.

Anyway... I'm rambling!!! I gotta fly 'cuz I have a metal show to see today :-) Take care!

allmost60's picture
allmost60
Posts: 3167
Joined: Jul 2010

Hi, and "Welcome"...
After reading your "about me" page, I think you are going to do just fine with treatment...your attitude is spectacular. Chemo is no fun, but totally doable. The hardest thing for me is accepting this so called "new normal" that my doctor keeps telling me to get use to. I want my old self back with that extra kick in my step...ha! You are a few years older than me..I'm 61...and it sounds like I could take a few lessons from you, so keep on posting and sharing. Let us know your scan results and when you start your treatment. I'll be keeping good positive thoughts for you. Best wishes...Sue (FNHL-2-3A-6/10)

anliperez915's picture
anliperez915
Posts: 755
Joined: Sep 2011

Hi veedub,
Great attitude veedub, I wish I could have been like you at the beginning. I was diagnosed last July and got depressed for a couple of months until I realized that I could make it through this! My dx is Splenic Marginal Zone NHL, Stage 4, tumors in spleen, liver and bone marrow involvement. I did Rituxan treatment in Feb got a brake for 6mo and I just started another round last wed for four weeks and then hopefully I will reach remission. With your positive attitude I'm sure you will be and do fine as you start your journey.
I used to live in San Diego, lived there for 19yrs and now I live in Texas (no cannabis for me) :((((
They are still too uptight here in Texas lol!!!
Take care and keep us posted

Sincerely,
Liz

Bermudagirl
Posts: 120
Joined: Jun 2012

Hello everyone,

I stumbled upon this site while unfortunately spending alot of time over at the Esophageal cancer forum. My boyfriend was recently diagnosed with Stage III EC. While Hodgkins is tough, its small potatoes compared to esophogeal! I know that is small comfort, but Hodgkins has such a great cure rate, and I'm living proof of that.

I was dx in October of 2002, went through 4 rounds of ABVD, had a month of radiation, and haven't had an issue since. Well that's not quite true, since I was radiated in a Y formation in my chest I do have to be very on top of mammograms and the potential for breast cancer down the road. (I'm 53 now). I alternate between a breast MRI and mammogram every 6 months. I had a benign papilloma removed in April, but other than that I am fine.

So to the newbies, take comfort in the fact that for the most part Hodgkins disease is a very treatable form of cancer, and once you get through treatment life will return to normal. Good luck to you all!

Sandy

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 1101
Joined: May 2012

Bermuda,

Even Esophagal treatment is much better that it used to be. My uncle got it in around 1973. Essentially, the just cut everything out. Before this, he received "radiation." He smelled like roasted pork chop on the way home after each session. His incision was from his chin to his pelvic area, and he died shortly thereafter.

The funeral director came up to us and said, "I have never seen anyone cut up the way this poor man was cut up."

Yes, all forms of cancer have advanced past 1973...

But, you are correct, lymphoma is one of the easier forms to receive treatment for, nonetheless. I did 12 cycles of r-abvd, the med which you received.

max

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