A little question about where your NHL was found, what part of your body?

bluerose

homegirl said:

Body part
Bluerose, I found mine in my right armpit. Raised my arm to shave one evening in the shower when I noticed large lump. My pits have never been very hairy so do not know when I shaved last, but when I had my ultrasound 2 weeks later one was measured at 5.4 cm, and there were couple more smaller ones. Even today I have to raise my arm and put my hand behind my head and push out the pit to really feel it because it is so deep. I probably have a little extra fat tissue there as I am not a thin person. Also have enlarged nodes in other pit, but cant feel, nor any of my others through out my body.
Martha

Hi Martha
Sounds like you might have first had 'blowup lymphoma' as my oncologist called my NHL when I first found the lump. Mine first appeared in the left groin area but sort of at the top of that area so I could see it. I was watching tv in the dark and my pj long tshirt had come up a bit as I lay in bed and I had an itch. When I put my hand on the leg to scratch it YIKES I felt this large lump. I had an immediate jolt of electricity go through me that was really strange. It wasn't like pain from touching the lump just kind of an emotional jolt. I had no idea what that meant. I wasn't scared or anything, just thought 'what the heck is this?' I swear it wasn't there the day before. Just blew up.

Anywho I went to the doc soon after and the testing started and the rest is history. That was 25 years ago. Had a bone marrow transplant, one recurrance a year and a bit after the first diagnosis and then that was it, they considered it a cure years ago.

Nodes are all over our body, found one in my right breast not long ago in an ultrasound but it proved to be nothing.

Hope you remain NED for the rest of journey.

Blessings,

Bluerose

bluerose

cooky38 said:

lymphnodes
I had a large one on my groin area and then pretty fast, [it seemed like it or mabey not [i was still working] to 5 more on the other side and then in my chest and abdomen, then when it came back it was in my bone marrow.

Hi Cooky
Thanks for your reply. How are you now?

Bluerose

bluerose

allmost60 said:

Groin
Hi Bluerose,
January 2010 I had just dried off from my shower and while putting lotion on my body I felt a lump on my groin..(left side). I showed it to my husband and then the following week went in to see my PCP. He sent me for an ultra sound which showed the one medium lump we could feel, but also showed a couple of more smaller enlarged nodes in the same area that we couldn't feel. PCP decided to wait and watch until my yearly physical in May. Come May, I went for another ultra sound which showed growth of the one medium size node and now revealed a total of 6 more enlarged nodes. I also had a very small hard node on the left side of my neck show up during the wait and watch time..Jan-May. PCP sent me for a CT scan of pelvic, stomach and neck, which then showed enlarged nodes in all 3 area's. I didn't have a clue about the tumors in my stomach until the CT scan. In June 2010 I had the largest node in the groin surgically removed and biopsied, along with a BMB to complete the staging(no bone involvement).... the rest is history. Diagnosed having Follicular-NHL-grade2-stage3-typeA. Started chemo(CVP-R) Aug 26th 2010 and finished 6 rounds on Dec 14th 2010. Follow up CT scan on Jan 26th 2011 showed slight activity still in the node under my colar bone. Onc said I wasn't in remission, but considered the cancer to be stable. He started me on Rituxan maint Feb 14th, to be given every other month for the next 2 years. My next scan will be in April 2012, unless something new developes. So far so good...I've done 3 rounds of Rituxan so far and no new developements..(knock on wood). Now I just wait and see and hope for the best. Good luck tomorrow with your biopsy..I'll keep you in my prayers and be thinking good positive thoughts! Much Love...Sue (FNHL-2-3A-6/10)

Hey Sue
Oh I am so sorry that you have had so much going on with your NHL. I was offered the wait and see approach after my first diagnosis but I couldn't do that so had a regular CHOP treatment, they didn't have Rituxan back 25 years that I know of. Anywho had a bone marrow transplant a year and a bit later with the NHL returned. The second biopsy was under my left breast so that's why I was so worried about this thing in my left breast that showed up that I was to have biopsied yesterday.

To my pleasant surprise when the doctor came in to do the biopsy yesterday he took one look at it and said it was nothing and he wouldn't biopsy it as he was sure that there was nothing to worry about and it was just a little lymph node. WHEW. That was a scare I didn't need. Anywho the good news is that it all worked out so I am greatful for that.

Thank you for your good wishes and I pray that you will be NED soon and can put this cancer journey behind you.

Blessings,
Bluerose

bluerose

miss maggie said:

Cancer found in
Dear Bluerose,

I had no symptoms at all. I was so active the summer of 2009. I was looking
forward to the last day at my beach club, Sunday, Sept 2009.

Saturday evening,2009 I had a horrible pain. No memory of pain. I was rushed to the
ER, had a CT scan. Ct Scan showed my small bowel perforated. I was rushed into surgery,
and had my small bowel resected. The perforation was caused by NHL. I suppose you could
say the NHL was in my small bowel. Bone marrow biopsy negative, colonoscopy june 2010
negative, and pet scan in Dec 2010 negative. Remission Jan 2011. I will have another
colonscopy in Sept 2011 and will also see my oncologist in Sept.

PS: I had 4 weeks of Rituxan, once weekly in Dec 2009.

I take one day at a time. If and when the cancer returns, I will deal with it in a very
postive way. I will enjoy everyday until then.

Good luck with your biopsy, and hope everything turns out negative. Love Maggie

Hey Maggie
I love your attitude, it will take you a long way not only with cancer but in life as well and I am sure it has to date. Way to go.

I hope that everything works out well for you and with that attitude I'm sure it will.

My biopsy was refused because the doc who was going to do it said that there was no way this lymph node was abnormal and you kind of know when a doctor knows what he is talking about and this one did. I am usually leary of docs with all my cancer history but this one definitely knew what he was saying so I was relieved. A bullet dodged for me, what a relief.

Thank you for taking the time to write and share.

All the best.

Bluerose

bluerose

COBRA666 said:

Bluerose,
Yes,I had 6 rounds of R-CVP and was in remission in October 2010. Went back for pet scan in April and still no activity. I go back again in Sept. 2011 for another pet. I am on the rituxan maintenance now. I hope it stays away. It would be great. John(FNHL-1-4A-5/10)

Hey Cobra
Glad you are in remission. YAY. Personally I have never liked the word remission because, for me, it says 'but it will be back' and I personally just didn't like the sound of that so I never used it. I preferred to say 'it's gone' which isn't a lie, it is gone for that time, so why not continue that and think 'it's gone PERIOD'? I don't know, some say it's just semantics or leads to maybe false hope, but I think it's more powerful a thought than that. I believe in the power of prayer and positive thought and that you can make things happen in your body sometimes if conditions are right. Just my little way of looking at things.

Take care and let's hope that it's all behind you.

Blessings,

Bluerose

COBRA666

bluerose said:

Hey Cobra
Glad you are in remission. YAY. Personally I have never liked the word remission because, for me, it says 'but it will be back' and I personally just didn't like the sound of that so I never used it. I preferred to say 'it's gone' which isn't a lie, it is gone for that time, so why not continue that and think 'it's gone PERIOD'? I don't know, some say it's just semantics or leads to maybe false hope, but I think it's more powerful a thought than that. I believe in the power of prayer and positive thought and that you can make things happen in your body sometimes if conditions are right. Just my little way of looking at things.

Take care and let's hope that it's all behind you.

Blessings,

Bluerose

Bluerose,
To be honest I never cared for the word remission either. I used to hear people say that long before I got Lymphoma. They would say the word remission and the first thing I would think is,Well that means you are waiting for it to return. I like the word GONE better too. John

miss maggie

COBRA666 said:

Bluerose,
To be honest I never cared for the word remission either. I used to hear people say that long before I got Lymphoma. They would say the word remission and the first thing I would think is,Well that means you are waiting for it to return. I like the word GONE better too. John

Bluerose and John
Hi to you both,

Sign me on for GONE. For me, GONE Jan 2011.

Love Maggie

cooky38

bluerose said:

Thanks for the post She514
I will pray that your wait and see approach works in your favour and that these things shrink down to nothing.

All the best.

Blessings,

Bluerose

bluerose
Hi bluerose i don't feel the same since my last chemo,i'm always tired now all of the time; infections hang on for a long time; i am still fighting oral thrush since april. see the doctor in the morning. You give me hope blessings denise

miss maggie

bluerose said:

Hey Maggie
I love your attitude, it will take you a long way not only with cancer but in life as well and I am sure it has to date. Way to go.

I hope that everything works out well for you and with that attitude I'm sure it will.

My biopsy was refused because the doc who was going to do it said that there was no way this lymph node was abnormal and you kind of know when a doctor knows what he is talking about and this one did. I am usually leary of docs with all my cancer history but this one definitely knew what he was saying so I was relieved. A bullet dodged for me, what a relief.

Thank you for taking the time to write and share.

All the best.

Bluerose

Hey to you too Bluerose
Dear Bluerose.

Thank you so much for your kind words.

Since I was DX and signed onto this site, I have seen so many of your
posts, and your detailed responses to others in need of information.
You are wonderful, and always take such care and time with each response.
I don't want to make you blush, but my words are true.

I should of included this paragraph first, but I got carried away.
I am over the moon with your wonderful News. May you continue each
day, and every year with a DX of GONE>

All my love to you. Maggie GONE Jan 2011

moftexas

Where
Mine was found on a routine annual physical by my doctor in February of 2009. My spleen was enlarged. I had no symptoms and had never felt more fit than I did then. On the scans it was pretty much everywhere and I had absolutely no idea I was sick. It's crazy. In remission (and yes I hate that word too) since July of 2009. Remission is a crummy word because it suggests a return of cancer, but really, I hate for people to assume I'm cured, cause that isn't the reality of it all.

MofTexas

homegirl

COBRA666 said:

Enlarged Nodes
Martha,
Where else in your body do you have enlarged nodes? Don't know if you had a scan or not,but that will tell where they all are. John

enlarged nodes
John, specifically my pet scan concludes "extensive involved lymph nodes, most intensive right axilla,spleen generously sized and fairly intense." CT scan showed extensive lymphadenopthy in right neck, axillae, right lateral thoracic lymph node chain, the mediastinum, retrocrural, mesenteric and retroperitorneal region, also extensive bilateral inguinal lymphadenopthy." I think that means about everywhere! Largest size was 5.4 x 3.4, others of note are 3.0+ Bone marrow was clear. Martha

homegirl

bluerose said:

Hi Martha
Sounds like you might have first had 'blowup lymphoma' as my oncologist called my NHL when I first found the lump. Mine first appeared in the left groin area but sort of at the top of that area so I could see it. I was watching tv in the dark and my pj long tshirt had come up a bit as I lay in bed and I had an itch. When I put my hand on the leg to scratch it YIKES I felt this large lump. I had an immediate jolt of electricity go through me that was really strange. It wasn't like pain from touching the lump just kind of an emotional jolt. I had no idea what that meant. I wasn't scared or anything, just thought 'what the heck is this?' I swear it wasn't there the day before. Just blew up.

Anywho I went to the doc soon after and the testing started and the rest is history. That was 25 years ago. Had a bone marrow transplant, one recurrance a year and a bit after the first diagnosis and then that was it, they considered it a cure years ago.

Nodes are all over our body, found one in my right breast not long ago in an ultrasound but it proved to be nothing.

Hope you remain NED for the rest of journey.

Blessings,

Bluerose

Blowup
Bluerose, that sounds about the way mine was. The only thing else I remember is laying in bed and thinking my shirt feels tight up under my arm, but never really felt anything. When I first noticed the lump, it really scared me as I thought it was breast cancer, and I had lost my sister to breast cancer 19 years ago, she was only 43 years old at the time, so I immediately had it checked out and was relieved, for a while.
So glad to hear that you have had 25 years, and I wish for you 25+++ MORE. I started R-CHOP on Monday and Tuesday and so far so good. My hope/desire to to give this a good wallop and live to watch my grandsons have grandsons, (well maybe that is a stretch, lol)
Martha

KC13167

bluerose said:

Hey Kellie, what are you doing with MY cat? lol
Your cat looks just like my cat Angel. lol. Yours looks like it has a lighter smudgey nose area, mine is a chocolatey brown there, but basically the same look - Himmy right? Aren't they great? Love mine to pieces. So smart.

Anywho, thanks for the input. I was just wondering about sites as I had a lymph node show up recently in my breast but it has proven to be fine. Just wondered where the key sites are for others.

You know I have had a 'something' show up at the base of my spine for a long time and I am on morphine daily because of the pain but they feel it's just more arthritis. I have never bought that story. However I have a pacemaker from chemo damage and so I can't have an MRI. I have had a ton of treatments and late effects from it all 25 years ago and so my testing is limited now due to procedures I have had to have. Oh well.

Hope you are feeling alright and that it's all gone and you can get on with your life.

Blessings,

Bluerose

My Kitty!
Bluerose,

Yes, he's a himmy and I love him. This is then only cat that I've gotten from a breeder, the others have been rescues. If I ever get another cat, it will be a rag doll. I was devastated when I was first diagnosed. My Onco said that I couldn't keep my bird, due to the fact that they can harbor opportunistic diseases. I was in such a state that I thought that I also heard her say that I had to rehome my cats as well. I was very depressed for many days. I wasn't even able to say that I needed to rehome my cats out loud for fear of falling apart. When I finally could verbalize it, I spoke with my fiancé, who was with me in the hospital, the day the Onco listed my restrictions. Come to find out.......I must have been overwhelmed with information. My Onco never said that I had to rehome the cats, she said that I couldn't touch the cat litter and would have to love them less, if my counts dropped. Always have another set of ears with you, lesson learned!

I am also on morphine for pain, both long and short acting.

Kellie

bluerose

moftexas said:

Where
Mine was found on a routine annual physical by my doctor in February of 2009. My spleen was enlarged. I had no symptoms and had never felt more fit than I did then. On the scans it was pretty much everywhere and I had absolutely no idea I was sick. It's crazy. In remission (and yes I hate that word too) since July of 2009. Remission is a crummy word because it suggests a return of cancer, but really, I hate for people to assume I'm cured, cause that isn't the reality of it all.

MofTexas

It was the doctors who used the word 'cured' with me and that got me thinking about the remission word. It puts the mind in a more positive frame too to consider it cured. Yup there is a chance it can come back in many situations but it's kind of a glass half empty or filled kind of thing I guess.

There are certain realities that have to be dealt with but I like to try to take the positive road if I can.

Thanks for your input.

Blessings, Bluerose

bluerose

cooky38 said:

bluerose
Hi bluerose i don't feel the same since my last chemo,i'm always tired now all of the time; infections hang on for a long time; i am still fighting oral thrush since april. see the doctor in the morning. You give me hope blessings denise

I'm glad Cooky
Glad I give you hope, that's what this board should be all about, sharing information to help others.

I had all my treatments 25 years ago and I still have side effects of treatment but remember that was a long time ago and from what I read the treatments are much better now. One day at a time is the way to go as far as I am concerned.

Take care Cooky.

Bluerose

bluerose

homegirl said:

Blowup
Bluerose, that sounds about the way mine was. The only thing else I remember is laying in bed and thinking my shirt feels tight up under my arm, but never really felt anything. When I first noticed the lump, it really scared me as I thought it was breast cancer, and I had lost my sister to breast cancer 19 years ago, she was only 43 years old at the time, so I immediately had it checked out and was relieved, for a while.
So glad to hear that you have had 25 years, and I wish for you 25+++ MORE. I started R-CHOP on Monday and Tuesday and so far so good. My hope/desire to to give this a good wallop and live to watch my grandsons have grandsons, (well maybe that is a stretch, lol)
Martha

Not a stretch Martha
You can do it too Martha, you have a great attitude.

All the best of luck with your treatments, kick it's butt and get back to those grandkids with all the energy you had before this nasty visitor came to stay for awhile.

Blessings,

Bluerose

bluerose

KC13167 said:

My Kitty!
Bluerose,

Yes, he's a himmy and I love him. This is then only cat that I've gotten from a breeder, the others have been rescues. If I ever get another cat, it will be a rag doll. I was devastated when I was first diagnosed. My Onco said that I couldn't keep my bird, due to the fact that they can harbor opportunistic diseases. I was in such a state that I thought that I also heard her say that I had to rehome my cats as well. I was very depressed for many days. I wasn't even able to say that I needed to rehome my cats out loud for fear of falling apart. When I finally could verbalize it, I spoke with my fiancé, who was with me in the hospital, the day the Onco listed my restrictions. Come to find out.......I must have been overwhelmed with information. My Onco never said that I had to rehome the cats, she said that I couldn't touch the cat litter and would have to love them less, if my counts dropped. Always have another set of ears with you, lesson learned!

I am also on morphine for pain, both long and short acting.

Kellie

Hey Kellie
We sound alot alike.

I just came back from my one month checkin with my GP and we talked about the cats and she said they are more important to me than many people might think. We were talking about the Vet wanting to put one of mine down as she has had a stroke and maybe even a brain tumour and I have been nursing her. NO way is she going to be put down, she is fine except for the wobble in her walk now.

Pets are such therapy for so many people and a part of the family for sure. Mine are worth a fortune to me.

Take good care.

Bluerose

JacquieK

Location of Lymphoma
Hi BlueRose,

I found my lymphoma because there was a lump in my neck under my collar bone. It was wrapping around everything in my neck and decided to choke me. The main tumor however, was on my heart. It had punctured my pericardium and decided to aggressively take out my heart. I was very blessed to have caught it and had an excellent surgeon at Loyola who was able to remove as much of the tumor as possible and then of course chemo and rad. Today is the one year anniversary of my tumor being removed from my heart and the beginning of my 10 month battle against this monster.

Good luck to you!

Jacquie

bluerose

JacquieK said:

Location of Lymphoma
Hi BlueRose,

I found my lymphoma because there was a lump in my neck under my collar bone. It was wrapping around everything in my neck and decided to choke me. The main tumor however, was on my heart. It had punctured my pericardium and decided to aggressively take out my heart. I was very blessed to have caught it and had an excellent surgeon at Loyola who was able to remove as much of the tumor as possible and then of course chemo and rad. Today is the one year anniversary of my tumor being removed from my heart and the beginning of my 10 month battle against this monster.

Good luck to you!

Jacquie

Hi Jacquiek
Thanks for your response and congratulations on your one year anniversary surviving the monster and I know you will stand strong for the next 10 months in your battle with it all. With the help of friends and family and this site you will get through it.

I am a 25 year survivor of NHL, considered cured after one recurrance 23 years ago so I do know a little something about survivorship and the strength it takes to get through. You sound like a strong survivor. Keep us posted. It won't be easy but you can do it.

Blessings,

Bluerose

Gishy

bluerose said:

Hi Jacquiek
Thanks for your response and congratulations on your one year anniversary surviving the monster and I know you will stand strong for the next 10 months in your battle with it all. With the help of friends and family and this site you will get through it.

I am a 25 year survivor of NHL, considered cured after one recurrance 23 years ago so I do know a little something about survivorship and the strength it takes to get through. You sound like a strong survivor. Keep us posted. It won't be easy but you can do it.

Blessings,

Bluerose

Mine was extra nodal in
Mine was extra nodal in Stomach/Bone Marrow, 8 cycles of R-CVP and Radiation x 30. 6 year Survivor.

Wish you all successful treatment and for the Survivors to be in NED forever!