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Newly Diagnosed

amanda_33
Posts: 13
Joined: Dec 2011

Hi, I'm 33 and I was just recently diagnosed with Diffuse Large B Cell Lymphoma. I had my first chemo treatment (r-chop) on December 21. I will not find out what stage my cancer is until Jan. 5th because my doctor is waiting on other test results to come back. I am very new to this and I was wondering what to expect with this type of cancer and treatment. Thanks!!

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

Amanda,
So sorry you have to be here,but you will be with a bunch of caring and concerned people. I also have Lymphoma,but mine is indolent type. Stage 4 which means its in the bone marrow as well. The good news is it doesn't matter the stage. Its all treated the same.The type of cancer we have is very treatable. Not cureable as of yet but treatable for a long,long time.Its considered a chronic disease. Its not a death sentence.
As far as your treatments you can expect a pretty rough ride with the tiredness as the treatments progress. It will feel like a bus ran over you by the time you reach your last treatment. The treatments are progressive. They are also doable. We have all gone thru them.You may even get a little sick and then maybe not. At least we hope not,but if you do it will pass as well.Your thinking will probably get a little fuzzy. Thats what they call chemo brain. That will pass as well in time. You will be ok in the end. It may not feel like it sometimes,but you will be fine. Hope I did not scare you,but it is something you will experience as time goes along. Remember you will be fine. John

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

I would like to add you sound pretty calm for just bring diagnosed. I was a complete mess on the other hand. I did not know which way to turn. Then again maybe you are like the duck on the pond. Cool and calm on the top but paddling like hell underneath.If you are I can not really blame you. Its a lot to have to deal with. This is certainly the unknown for you as it was for the rest of us. All you hear is the word CANCER and nothing else. At least that is the way it was for me. It takes time and the people on here to let you know you will be ok. John

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

Hi amanda_33,
Wishing you only the best in your treatments to come, I have not been treated yet I'm on the watch and wait "therapy". I also have Follicular NHL stage IV with spleen, liver and bone marrow involvement. You will find lots of caring people here that will be able to help you more than I can. Just wanted to welcome you to the board!

Sincerely,
Liz

cynthiad
Posts: 3
Joined: Jan 2012

I had R-chop @ continued to work 50 hours a week because i had to and was not eligible for FMLA.So it's definately doable. You can do anything you set your mind to and this is a time in your life when you need all the mental stamina that you can muster. I did not have any reaction to my diagnosis, I had been thru so many other things in my life that were worse it was like no big deal, so don't think you have to be an emotional mess to have a normal reaction. people who get emotional and upset about losing their hair etc need to get a life and get their perspective in order. When you have a life threatening disease the last thing one needs to be is whining about hair loss. it will grow back!! I decided to shave my head before treatment and bought an expensive ($1300.00) wig before I lost my hair. After I lost my hair I really regretted buying the wig.I never wore scarfs, wigs or anything else on my head. It was the most liberating thing I've done. I was a 45 year old female in a high level executive position and would put on my suit in the morning and march out with my bald head for 6 months. The feel of the wind on my head is something every female should experience. So MANY women approached me everywhere and said they wished they could go around like that and take their wig off but they didn't have the courage. So I say to you make this time about bold choices, really pay attention to all of your senses and all in nature that is going on around you, and keep a journal. This will be the greatest learning experience of your life if you can embrace the suffering and not run from it and but face it head on and allow it to teach you all you need to know about life and love.

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

Cynthia,
All I can say is I certainly admire you for being able to do the things you did,such as getting up everyday and going to work during your last treatments. I really do not know if I could have done it. I was so weak after my 3rd round of R-CVP. I think I slept most of the time. At least if not sleeping I was sitting down most of the day. I did not get sick or anything,but I ached all over. As far as doable,I guess anything is doable if we come out alive.There were times I wasn't too sure about that either.I was fuzzy brained as well. Wish I could have had it as easy as you did. John

cynthiad
Posts: 3
Joined: Jan 2012

Sounds like you had it pretty rough during treatment. My bad times were actually before I was diagnosed. I had lost 70 lbs unintentionally and was down to 105lbs for 6 months and my specialists all kept saying I was anorexic and was in denial. They wouldn't test for anything further because they were so convinced. I couldn't get anyone to listen to me until I had a small cyst like growth pop out under my eye. The eye dr. told me to go home and put hot compresses on it and come back in 6 weeks and he would drain it. I went back and he said it's been growing why didn't you come back sooner. I said you told me to do what I did. Anyway he called the lacrimal surgeon down and he put me in the 1st surgery slot open and when the pathology report came back it was an aggressive lymphoma. By this time I was relieved to finally have a diagnosis since for 6 months I could bearly walk more than 25 feet without sitting down because I was so weak. The oncologist told me I was the weakest patient he had ever seen.My Dr's didn't know what to say when I called and gave them the news. They were pretty taken back.
This was my second cancer ,I had thyroid 4 years before that. I've had 22 operations including open heart ,bowel resection and many other other major ones. The worst problem I have is Crohns disease, the treatment for that caused the lymphoma so now I can't ever be back on the heavy duty Crohns meds (Remicade and immune suppressants)so that is out of control. My son died of (Rhabdomysarcoma) Cancer of the striated muscle at 13). My point is it's all about perspective I think the more you've been through the easy things are to go through in the future because your coping skills are honed. What ever doesn't kill you makes you stonger. I really believe in that saying. I 've never seen anyone suffer the way my son did but he never complained. Children are so resiliant. He went through it with such grace and dignity.He taught me so much and seemed so wise for his age.He set the bar so high for me. I'm still trying to reach it!!!
Take care

cynthiad
Posts: 3
Joined: Jan 2012

Sounds like you had it pretty rough during treatment. My bad times were actually before I was diagnosed. I had lost 70 lbs unintentionally and was down to 105lbs for 6 months and my specialists all kept saying I was anorexic and was in denial. They wouldn't test for anything further because they were so convinced. I couldn't get anyone to listen to me until I had a small cyst like growth pop out under my eye. The eye dr. told me to go home and put hot compresses on it and come back in 6 weeks and he would drain it. I went back and he said it's been growing why didn't you come back sooner. I said you told me to do what I did. Anyway he called the lacrimal surgeon down and he put me in the 1st surgery slot open and when the pathology report came back it was an aggressive lymphoma. By this time I was relieved to finally have a diagnosis since for 6 months I could bearly walk more than 25 feet without sitting down because I was so weak. The oncologist told me I was the weakest patient he had ever seen.My Dr's didn't know what to say when I called and gave them the news. They were pretty taken back.
This was my second cancer ,I had thyroid 4 years before that. I've had 22 operations including open heart ,bowel resection and many other other major ones. The worst problem I have is Crohns disease, the treatment for that caused the lymphoma so now I can't ever be back on the heavy duty Crohns meds (Remicade and immune suppressants)so that is out of control. My son died of (Rhabdomysarcoma) Cancer of the striated muscle at 13). My point is it's all about perspective I think the more you've been through the easy things are to go through in the future because your coping skills are honed. What ever doesn't kill you makes you stonger. I really believe in that saying. I 've never seen anyone suffer the way my son did but he never complained. Children are so resiliant. He went through it with such grace and dignity.He taught me so much and seemed so wise for his age.He set the bar so high for me. I'm still trying to reach it!!!
Take care

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

Amanda,
if I ever had to go thru what you did I think what I went thru was a cake walk. I believe in that old saying of What don't kill you makes you stronger as well. I just never went thru anything like I did with the chemo before. If I had to go thru what you did I would never complain even though what I went thru was tough. I can not imagine losing a child. John

jimwins's picture
jimwins
Posts: 2057
Joined: Aug 2011

Sorry you have to be here Amanda but you will find caring and
supportive folks here. I was diagnosed with Stage 2 Diffuse
Large B Cell Lymphoma back in April 2011.

I finished chemo (6 cycles of R-EPOCH) about 2 months ago and
so far so good. It's no picnic but it wasn't as bad as I expected.
Note this type of lymphoma is very treatable and even curable
so there's lots of reason for hope and positive outcomes.
You are young which is already a positive for you :).

Humor and a positive attitude are free weapons in this fight
so use them to your advantage. The first couple of treatments
are a little scary because you don't know what to expect. After
that it becomes more routine and there's less anxiety. Speaking
of anxiety, you might want to get a prescription from your doctor
to help with that. I know it helped me tremendously with the
worry and fear - especially in the beginning.

It would be helpful if you filled out the information in the
"about me" section so other folks have a better idea about
you, your cancer, where it was primarily found, etc. and you won't
have to repeat yourself in future posts.

Each person's experience with cancer and treatment can be somewhat
individual so read things with a grain of salt. Just because one person
had a certain side effect does not mean you will. Also be very careful
about what you read on the Internet - there's outdated and incorrect
information out there as well as very good information. My advice is
if what you're researching is scaring the heck out of you or putting you
in a negative mood, stop for awhile. You need to be as positive as possible.

I was very fortunate in that side effects for me were minimal during treatment.
The steroid (prednisone) was probably the worst of it for me overall - and
the "aches" after the neulasta shot given about a week after cycle completion.
It was no picnic but it is very "doable" as John said.

People here are very non-judgemental. Please feel free to come here and
vent, rave, cry, ask questions or laugh (we do laugh here on occasion).
I wish you the best and please keep us posted.

Hugs and positive thoughts,

Jim
DX: DLBL 4/2011, Chemo completed 10/2011, currently in remission. :)
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allmost60's picture
allmost60
Posts: 3171
Joined: Jul 2010

Hi Amanda,
Welcome to the group. I had a different chemo..CVP-R for my treatment, so I can't really help with your questions about R-CHOP. I do know that with most all of the chemo cocktails there are similarities with "GENERAL" side affects. Fatigue, achey joints and an overall feeling of not feeling "normal, is pretty much standard with all of them. I had a terrible time dealing with the Prednisone portion of my chemo. However, other folks didn't have the same intense re-action as I did, so it seems what one experiences doesn't necessarily mean will hold true for another. One thing you definetely can expect is to be tired...sometimes "bone" tired, as I call it. I found that resting, drinking lots and lots of water, and talking with my friends here in the group helped get me through the chemo days. Just be sure to keep open lines of communication with your doctor and when you have questions, make sure he/she answers them in a way you can understand. Be persistant with this and remember you are not alone. We are here for you and will help in any way we can. I have a feeling you will be just fine and your age is definetely going to benefit you. Take care and keep coming back to share how you are doing. Much love...Sue
(Follicular NHL-stage3-grade2-typeA-diagnosed 6/10) age 61

amanda_33
Posts: 13
Joined: Dec 2011

Thanks for the welcomes and responses everyone. I feel like this is site is going to be a great resource to me. My family and friends have been great so far, but they don't really understand what I'm going through. I have so many worries that I hate to say out loud like will I lose my hair? Also I'm a teacher and I worry about some young teacher just gradutating from college coming and in and taking my job. I worry about if I should tell the kids in my classroom that I'm sick. I worry about going back to school and being around "germy" kids all day. I also worry about what people think about me, because I see people that I know in town and they look at me and say "Well you look good" and every time I want to say, "Well what am I suppose to look like?" I know that this all sounds crazy!!! Something else that is bothering me is that I don't know if I'm in denial or acceptance, but so far it's almost like I'm having an out of body experience and this is not really happening to me. I am going for all of the tests and seeing all of the doctors but it's almost like it's all happening to someone else. Is this normal? Sorry to vent so much tonight, but these are all things that have been on my mind for awhile and I guess I needed to say them. lol

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

Amanda,
I was not going to post anything else to you until you had your 3rd or 4th treatment to see how the chemo was affecting you. Since you are asking about your feeling and have other questions you are not sure about brings me back to your post. The question about are you on denial or acceptance is probably a toss up. I am speaking from my own experience of how I felt. I had all kinds all thoughts go thru my head. Do I really have what they say I have or maybe I was misdiagnosed. How bad is this and how will it turn out?How did I get this? Will my hair fall out? (Some did but not all after the 2nd treatment)How will other people act towards me now? Do I look sick? etc.,etc. I would say what you are feeling is pretty much normal. I do not know how the prednisone will affect you. It was not to bad for me,but it did have me wired a little. There were times I was awake at 4am in the morning because I could not sleep because of the effects of predisone. I do not know how it will affect you. i wasn't the only one up all hours of the night. I would post something on the board and I would get an answer within minutes from another night owl. Unfortunately they were up because of the predisone. What I really found with that experience was that was when I did most of my soul searching and hard thinking.I really felt alone in those wee hours,but never mentioned it. Don't feel as though you are alone in this battle.Thats what we are here for......to help each other. John

allmost60's picture
allmost60
Posts: 3171
Joined: Jul 2010

Hi Amanda,
You do not sound crazy. I felt all of the exact feelings you are experiencing. In the first weeks of my diagnosis(June 2010)I was a mess! I went through a series of emotions from denial, sadness, anger, scared, you name it, I felt it. I had long hair and immediately cut it off short because my doctor said it would all fall out. Well...it didn't, but it did thin and at times I would have 2 fists full of hair after washing it. I hated my short hair and every time I looked in the mirror I would cringe. I had people tell me all of the time how good I looked and say they couldn't even tell I had cancer. Kind of made me mad, especially when I was feeling so run down and tired and someone would say.."gee you look great". I still have bad days where my emotions take over, but I'm learning how to put myself in check and get back in a positive mode. I do worry about recurrance..when will it happen...where will it go next...will my next chemo be harder than my first? I will say though, I have more good days than bad, and have learned to cherish EACH day to the fullest, I'm 61, a lot older than you, so youth is not on my side. You are going to be ok Amanda..it doesn't feel like it right now, but a year from now you will see how different you will feel. It will be your new normal, and it's ok...it's really ok. Keep us informed and when things get crazy for you, don't hesitate to reach out...someone will always be here for you. Much love...Sue (FNHL-2-3A-6/10)

jimwins's picture
jimwins
Posts: 2057
Joined: Aug 2011

Your worries are normal - this is a frightening thing and it will forever
change your life. I can relate to your "out of body" analogy. We protect
ourselves this way and it's perfectly normal. I still haven't dealt with
some of it and I finished chemo 2 months ago. Anxiety is normal and I'm already
starting to have anxiety about my check up in February.

I was prescribed Atavan for anxiety and believe me it helps take the edge off.

Regarding your hair - yes you will probably lose it. My suggestion is to
prepare for it - try to "go with it" and make it fun. You could have a
get together maybe and have friends bring silly hats/head gear. The hair
will grow back. Mine is starting to come back and it's quite a bit darker
than before. Honestly, I kind of enjoyed not having to shave for awhile.
The fact I sort of reverted to pre-puberty in the "nether regions} was kind
of strange :). I hadn't had that kind of "air conditioning" in years ;).

Regarding teaching, that's up to you and how you feel. There will be periods
after your treatments when your blood counts are low and you have to be very
careful about infections as your immune system will be at its weakest.
Generally they recommend avoiding crowds, sick people and only eating
well cooked foods and avoiding certain items altogether while you're
neutropenic.

The fact you are young should help you a great deal. Just couple that with
a positive attitude and laugh when you can - that really helps.

Keep us posted - we'll be here cheering you along the way. By the time you've
had treatment 3, it should be more routine and you will know what to expect.

Hugs and positive thoughts,

Jim
DX: DLBL 4/2011, Chemo completed 10/2011, currently in remission. :)
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allmost60's picture
allmost60
Posts: 3171
Joined: Jul 2010

Hi Amanda,
Jim is correct when he says by round 3 your treatments will start to be more routine, but in my experience, you may have some "unexpected" challenges thrust upon you from that point on. One being the cumulative effect from the chemo building up in your system. If you are on a 21 day cycle between rounds, you need to know that the chemo is working in your system well after that 21 days. So by the time you go for the next round and so on, the chemo keeps building and building in your body. I found by round 4,5, and 6 the fatigue was extreme and required many rest periods during the day. I also started having more aches and pain in my muscles and joints. Slight neuropathy started during round 3 in my hands and feet. A few toes and fingers were affected,not extreme, but just enough that it made writing, opening jars, and holding objects very uncomfortable. John described it to me quite accurately that by round 4 I would feel like a bus had run over me and then backed up and ran over me again....he was right! He prepared me for those days which helped tremendously because when it did happen I wasn't blindsided by it. I hope any side effects you experience will be mild, but don't be surprised if it gets rough near the middle and and end of treatment. I by no means want to scare you, but do want you to know that as your chemo treatments progress new challenges may crop up. My chemo CVP-R was a milder cocktail than the R-CHOP, so I can only assume that there be more challenges with it. Good luck and remember we are here for you. Have a good week...Love, Sue
(FNHL-2-3A-6/10)

hijenist's picture
hijenist
Posts: 6
Joined: Jan 2012

Hi,
I am 35 and finished my last round of RCHOP a few months ago for the same cancer. I lost my hair within 10 days of the first treatment. I lost my eyebrows and eyelashes after the fourth. I think everyone reacts differently to the treatments. Be advised that RCHOP levels will vary upon the individual. I was in the hospital for five days straight, chemo 24 hours a day. I hated the prednisone, and would gain weight and be extremely moody until a few days after the treatment. The fourth treatment I started developing mouth sores. I had neuropathy in my fingers, but not in my toes. The feeling came back right around two months after my last treatment. My doctor kept lowering the Vincristine though because the neoropathy had me so worried. Your anti-nausea meds are your best friend. I would use Ativan at the hospital during treatment, and for a few days when I got home. Be careful of constipation from the meds. Walk around as much as you can, but don't push yourself too much. There are amazing bandanas, scarfs, and hats you can buy for cheap. I had a wig but I didn't like it. Yes, you will look like you have cancer, but wear it as your badge of courage. Unless people have gone through it, they have no idea what you are going through. You are a cancer warrior! Your oncology nurses are there for you and will be your best friends :)

amanda_33
Posts: 13
Joined: Dec 2011

Hi Everyone,
I just wanted to share a bit of good news today. I went to the doctor earlier and he told me that my petscan showed cancer in the lymphnodes on both sides of my body and on my lung. He also said that I don't have any bone marrow involvement. (yay!!) So he said given that, my cancer (lymphoma) is considered a "bulky" stage 2 because of the size of the mass on my lung. He also said that since my breathing is better, my cough is gone, and the chemo only made me a little sick that my body seems to be responding well to treatment. Maybe it's because we always tend to imagine the worst, but this was great news to me. I know that I still have a long road ahead of me, so please continue to keep me in your thoughts and prayers. Thanks!

amanda_33
Posts: 13
Joined: Dec 2011

Hi hijenist,
I'm so glad that you responded to my post. I was wondering if you could tell me a little bit more about your cancer. What symptoms did you have? Where was the cancer in your body? What stage was it? Was it in your bone marrow? Why did you have to stay in the hospital 5 days and get chemo 24 hours a day? Did you experience alot of aches and fatigue with this treatment? Sorry to ask so many questions, I'm just new to this and want to learn as much as I can about it. If there is anything you don't want to answer I'll understand.
Thanks,
Amanda

hijenist's picture
hijenist
Posts: 6
Joined: Jan 2012

I had a bad cough, night sweats, fatigue, and a rash that started on my chest and eventually moved to my hairline. My doctors thought that I just had allergies, because my blood tests were ok. I kept pushing for a chest x-ray and that's when they discovered the tumor in my chest. It was about 7 inches long. My doctor wouldn't classify me into a stage, but I assumed it was a 2 to 3 since it was located to just the one area and hadn't travelled to my bone marrow. I had an amazing book that really explained NHL and the various treatments. I will look for it tomorrow and send you the title. You can ask as many questions as you like. I should have gotten on this discussion board when I was going through the thick of it. It really helps to talk to people that understand. I had a patient last week (dental hygiene) who had a 10cm tumor on her kidney and was diagnosed with NHL. She went through infusion, never had to go to the hospital and didn't loser her hair. She was able to work part time too. She said that she has to get treatments now every two months for two years. So see, it really depends. I know you're scared, but everyone told me if I was going to get cancer, it's the most treatable :)

Jen

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

Jen
Just wondering how you faired with the R-CHOP. I had 6 rounds of R-CVP in 2010 and it was no picnic from rds 3 and on. I understand what you went thru is a little tougher. John

hijenist's picture
hijenist
Posts: 6
Joined: Jan 2012

Amanda,

The name of the book I have is Non-Hodgkin's Lymphoma Treatment Guidelines for Patients Version III/December 2007 from the American Cancer Society. It is very comprehensive!

John,

What we all go through sucks! :) The first treatment I had a bad reaction to the Rituxin so each time after they went really slow with that, which made me have to stay in the hospital an extra day. I think my worst round was the fifth, I was really really sick after. But then I found out they increased some of the chemo levels. Looking back I had weird little quirks after each time, but now that it's over you realize that you just deal with it. The week before I'd have to go back into chemo I always felt like a rock star. I had a lot more energy and was all over the place. I think you have to make the best of everything. I'd decorate my "chemo tree" each time I went into the hospital to make the other patients jealous, and would wear the craziest bandanas and wigs that I could find. I even put a sticker on my car that reads Cancer is My *****. I drank water by the gallons because that's all I could picture was the cancer flowing out with the chemo. I really think that helped. How are you doing now?

Jen

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

Jen,
I have been out of chemo since Sept 2010.I was in remission on the 15th of Oct.2010. I have to go back every 6 months for the R maintenance. I feel pretty good except I get a little dragged out right after the R treatment for a while. I had R-CVP and it knocked me down after the 3rd round. Felt better just before the next one,but it knocked me down farther after each additional round. I could have swore a bus ran over me. Right now I am doing good,but still not 100% energy wise. John

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