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4/24/12: Diagnosed B-Cell NHL

Folks24
Posts: 96
Joined: Feb 2007

I joined here earlier as I had a "tentative" diagnosis of maybe cancer but it turned out to be Sjogrens which is an autoimmune disease also. Weakened immune system.

Well as of April 24, 2012 I am officially diagnosed with B-Cell Non-Hodgkins lymphoma. It was a bit of a fluke finding it as they did a CT on my lungs of which also shows the liver. Found a lesion, did a liver biopsy and found the cells. Thing is when the pulmonologist called the first words out of his mouth were "I have bad news." Gosh they got to learn to be a little bit diplomatic!!!!

I am getting a CT/PET and a bone marrow in hip done on Tuesday the 8th. I see the dr again on Thursday the 10th. IF (big if) the test results are all back "they wanted to do the tests Monday but couldn't" dr wants me to start chemo after I see her. Dr mentioned that due to the Sjogrens she was concerned if I would be more prone to getting an infections. But the only times I have been ill are in the Fall, Spring and maybe Winter. Summers for me have been 99% illness free so I hope that works in my favor!!

So far, the plan is R-chop which is 6 doses taking 4-6 hours ever three weeks. The dr wanted the initial chemo there but I am working with her to get my treatments closer to home as we have a cancer center here without driving 35+ miles each way as I don't know how I will be feeling driving that distance. Trying to plan ahead here some as drs can't tell me how I'd feel. Geesh!

I am totally solo - closest relatives 400 miles away. I "think" I am going to take partial disability and work 4 hours daily from home on my job which is a "bang the computer all day type". If I get to the point I can't do that, I will take the short term disability. I am finding all about that stuff from HR Monday. Heck I am just not sure!

So far it has been one fast rollercoaster ride for me. I'm trying to get things set up prior to chemo and have no idea what to expect. Emotions and brain is ok but tummy is getting ticked off from time to time.

Just want to introduce myself and have everyone wish me luck on my tests and my journey through chemo for NHL treatment.

allmost60's picture
allmost60
Posts: 3154
Joined: Jul 2010

Hi folks24, and "Welcome",
Well...you've come to the right place for support and "well wishes" as you start this journey. Many folks here have done, or still doing the R-CHOP protocol. I have Follicular NHL and did the CVP-R chemo, which is milder than the R-CHOP. I suggest you ask for a good sedative while having the BMB done. I had a very un-comfortable experience(putting it mildly) during mine, so I always tell people to request a twilight drug or mild "knock out" med before getting it done. My pain threshold is low, but many others also experienced a lot of discomfort with this procedure. I'm not trying to scare you, but would feel bad if I didn't warn you of the possible pain and discomfort involved. The next month is going to be hectic and hard,so please come back here as often as needed for support and frienship as you go forward. I'll keep you in my prayers...Sue age 61
(Follicular NHL-stage3-grade2-typeA-diagnosed June 2010-considered stable)
Treatments thus far:
6 rounds of CVP-R chemo(cychlophosphomide,Vincristine,Prednisone and Rituxan)...finished in Dec 2010.
Currently doing Rituxan maint(2 year plan)...infusion every other month(just finished first year in Feb). Yearly Ct scan(3 weeks ago)Results... no new cancer, still stable.

Folks24
Posts: 96
Joined: Feb 2007

Thank you for your welcome. Since being totally new to this I don't know a durn thing about how I will react to chemo, etc. I am concerned that taking the sedative would require someone to drive me home and I am basically solo though it probably would be nice. The dr assured me several times that after chemo I could drive home (35 mile trip).

All my friends work and my closest relatives are 350 miles away. I've got a couple people from a charity group I volunteer for that have helped me in the past but I hate relying on them so much.

I wish I had some idea what to expect reaction wise but no idea. Least I got packets to read and the hemotologist tried to with some info. When I got my liver biopsy the pulmonologist who ordered it said I could go to work the next day. (Must be the same type guy who thinks childbirth is like spitting out a grape!!) I had it done on a Friday and developed bad muscle spasms about 3pm Sat. The hydrocone helped a lot and I just needed it that Sat and Sunday. Got that from my gp who was ticked at em for not have a prescription of it for me in the first place. So not sure I trust what dr tells me my reaction would be to anything. Anyway, still working in the dark here but a nightlight is starting to come on so hope things go ok.

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

Just speaking for myself I would have someone drive me home after chemo. The benedryl is given thru IV injection (port). It is rather strong and will keep you droggy for quite a while. I believe some centers offer a transportation service for free. Mine does,but do not know about yours. The next day you will realize it was better to have someone drive you home. Again, I am speaking for myself. Benedryl does a number on me. John

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

Hi, I had stage 4 NHL went thru 8 rounds of R-Chop, tried working, only lasted a month. I went on temp. disability. The problem with me was the fatigue and the low blood counts, you don't want to be around people. With that being said, everyone is different, some people were able to work which is great. I agree with John, driving after Chemo is rough, but you being solo may be tough not to. Wishing you well, Vinny

jimwins's picture
jimwins
Posts: 1984
Joined: Aug 2011

Hi Folks and welcome to this site! Sorry you have to be here
but you'll find wonderfully supportive folks (no pun) here :).

Big hugs and good luck to you on your cancer journey. The unknown makes it difficult and scary in the beginning. As you go through the process, you'll find it easier to deal with as you learn what to expect.

My treatment was R-EPOCH which is very similar to your chemo.
My chemo was 6 cycles administered in the hospital around the clock
for 4 nights, 5 days, then off roughly two weeks and then start again.

I agree with everyone but each person is different and you may be able to work
part time from home. You will probably experience increased fatigue during
treatment. Also, you will probably be given prednisone which has side effects
that may impact sleep, concentration/focus, ability to multi-task, irritability/patience and in my case, vision slightly at times.

After I got into the routine of it, I did drive myself
home from the hospital after about round 3 but I only live a short 8 miles
from the hospital. If the drive had been much farther, I would not have
driven myself.

I'd recommend you not drive until you know how you are handling everything :).
Be good to yourself during all of this. It's no picnic but they have made such
progress in cancer treatment and managing side effects that it's very doable.

As far as the "solo" situation, try to make sure you have someone you can at least
stay in contact with during this. You might check with the social workers
where you're being treated - they should be able to refer you to forms of
assistance that are available (transportation, assistance, etc.).

Again, welcome here and know you are not "alone". Wonderful people and support
are here for you :).

Hugs and positive thoughts,

Jim
DX: DLBL 4/2011, Chemo completed 10/2011, currently in remission. :)

Folks24
Posts: 96
Joined: Feb 2007

I had thought I would start my chemo today. My -ologists are about 35-40 miles away and I talked with the dr about getting my treatments in my own city where they recently built a big new cancer center associated with the hospital. So, she said I should just get all my treatments there. My 'city" dr is calling me tomorrow to see me and set up the chemo.

The PET/CT and bone marrow was a snap compared to the liver biopsy. Also: I know that the cancer is only in two places and nowhere else. Also they will not be using a 20 gauge needle to deliver the chemo. (Sorry had visions of that!)

Right now I am on short term disability (dr signed off on) which is 26 wks for my company. I am gradually learning more. Course I am taking in what I feel I can take in at the moment and keeping myself on an even keel mentally & emotionally. So far, I have been able to. I am solo and do not really have a support system. I've talked to cousins in MN "retired & closest family" who can come down if I need them and give me moral support on the phone so that helps too.

PS: My liver biopsy the dr said I could probably go to work the next day. (Big Eye Roll Here!) Probably also thinks childbirth is like spitting out a grape! So I take in account how the dr says I will feel but prepare and use my own judgement too. I was smart and had the biopsy on a Friday.

Thank you for all your kind words and support.

anliperez915's picture
anliperez915
Posts: 742
Joined: Sep 2011

HI Folks24,
Just wanted to say hi, and that I'm glad you're getting everything sorted out! It's a relief to hear that you won't have to drive all that way for treatment and then back afterwards. I hear you about the dr's way of thinking (they think everything is a piece of cake) I think that's because they take everything based on a paper and not on the actual person. Well take care and keep us updated on how everything is going for you.

Sincerely,
Liz

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 1018
Joined: May 2012

Folks,

I had a different disease (a rare form of HL), and took a different combination (six months of r-abvd), but I will, in hope of being helpful, add to some of the comments here. You mentioned 'fearing a needle." I would highly recommend an iv PORT. It is much easier, and will reduce vein damage, especially if you are on a long treatment plan, with numerous drugs.

I had 12 infulsions, and got weaker after each one. I could NEVER have driven myself home, for a variety of reasons. Also, I got sicker after each, and developed more and more side-effects. I am not trying to be a kill-joy, but everyone should know that many people who feel "OK" after one or two infulsions are later flat on their backs -- that is what happened to me. Near the end of treatment, I was sleeping 15-17 hours a day. I had toxic lung imparement, no sense of taste, severe neuropathy (numbness in hands and feet), and constant flu-like symptoms (chills and muscle pain). No way could I have possibly worked at all.

Your drugs are DIFFERNET, and you may experience few or none of these side-effects, but they are among the more common ones in several of the popular chemo drugs. I just want you to have a contingency plan if things deterorate, so that you can function.

Do try to find a support network of some sort, perhaps through Social Services or your local Cancer Society.

May things go easy and well for you,

Max

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 1018
Joined: May 2012

Folks,

I had a different disease (a rare form of HL), and took a different combination (six months of r-abvd), but I will, in hope of being helpful, add to some of the comments here. You mentioned 'fearing a needle." I would highly recommend an iv PORT. It is much easier, and will reduce vein damage, especially if you are on a long treatment plan, with numerous drugs.

I had 12 infulsions, and got weaker after each one. I could NEVER have driven myself home, for a variety of reasons. Also, I got sicker after each, and developed more and more side-effects. I am not trying to be a kill-joy, but everyone should know that many people who feel "OK" after one or two infulsions are later flat on their backs -- that is what happened to me. Near the end of treatment, I was sleeping 15-17 hours a day. I had toxic lung imparement, no sense of taste, severe neuropathy (numbness in hands and feet), and constant flu-like symptoms (chills and muscle pain). No way could I have possibly worked at all.

Your drugs are DIFFERNET, and you may experience few or none of these side-effects, but they are among the more common ones in several of the popular chemo drugs. I just want you to have a contingency plan if things deterorate, so that you can function.

Do try to find a support network of some sort, perhaps through Social Services or your local Cancer Society.

May things go easy and well for you,

Max

VonKreig
Posts: 4
Joined: Jun 2012

Welcome folks24..My diagnosis is very similar to yours in that I too have difuse large b-cell..its scary but treatable..good luck and maybe I can help answer any questions you may have..I was diagnosed in Jan. 2012 and have 1 treatment left on r-chop with an added clinical trial drug and its working very well for me so far..best wishes to you

airbrushlady56
Posts: 1
Joined: Jun 2012

Hi there! I have had small cell (B cell) NHL, stage 2, and got Rituxan and Fludara together for 5 cycles of 3 days, once a month. I had very few side effects and worked at my job, solid through it all, never missing a day. I have no idea if this is a common reaction to my chemotherapy, but it's the one I had. I sincerely hope that others sail through this thing as well as I have. My cancer has been in remission for 2 years now and I feel great.

I'd like to mention though, that I was in great physical shape at the outset, doing yoga at least 3 times a week, which I continued through the treatments. I had lost 70 pounds before the lymphoma was discovered, which was great since I was overweight 5 years ago. Sometimes, during chemo, I was very, very tired, but the yoga seemed to re-energize me when I did it on a regular basis.

I never lost my hair and did gain 10 pounds during the chemo due to the steriods, which made me crazy hungry. The oncologists keeps saying that the chemo should keep the cancer away for "a while", whatever that means. I'm gonna enjoy every day I have and try to forget about the "Big C"--life is just too short, and sometimes it is shorter than you thought it was gonna be.

I wish the best for all of the cancer survivors and battlers out there. Remember, you ARE master controller of your life--you certainly can't control what comes down life's highway at you, but you can control how you deal with it. For me, I've found that sometimes the littlest things bring the greatest joy--the laugh of a friend, a beautiful sunset, my favorite song on the radio--they all have a deeper meaning now, and I try to really take the time to fully appreciate and enjoy them.

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