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new to this board and freightened

azgrandma's picture
azgrandma
Posts: 577
Joined: Feb 2010

Hello all
I am Lynda and i am a 2 year survivor of ovarian cancer.
I have continued to have blood isses since chemo. i was told yesterday that a test came back positive for a t cell gene rearangement, which i am told may be lymphoma. i get a ct scan next week.
can somone tell me a little about lymphoma?
i am freightened nd hate the though of chemo again.
If you pray i would apprecaite your prayers also.
Hope to get to know others here
Hugs Lynda

Aaron's picture
Aaron
Posts: 237
Joined: Jun 2012

Hi Lynda, I'm afraid I'm not a wealth of knowledge on this. I got my dx 3 weeks ago and start chemo in 2 weeks so I sure understand the being scared part. I just wanted to say hi and wish you the best. There are a lot of wonderful folks over here in the lymphoma division, they have been very helpfull and compassionate to me and will offer all the insight they can. Here's hoping your ct comes back clean and you continue to remain cancer free! Aaron

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

Lydia,
I know you are scared. I was right where you are a little over 2 years ago. I will not say I am not scared now.but not like I was back then. I have Follicular NHL. Currently in remission. There are many,many types and classifications of Lymphoma . There is always a treatment. If one fails then they go to another. It is not a death sentence at all. Its no walk in the park either. You will find all kinds of survivor stories on here. Some of us had it rough during treatment with all kinds of side effects from tiredness to confusion. Constipation issues for some due to Prednisone,but everyone got thru it. most of the survivors stuck around and still post and welcome others just as they were welcomed when they needed advice. This sight pulled me thru some real hard times and I will never forget it. Be sure to keep us updated whenever you can. John

allmost60's picture
allmost60
Posts: 3162
Joined: Jul 2010

Hi Lynda and "Welcome"!
I always cringe when a new post like your's appears. I too was scared witless with my diagnosis. I think it was a month after being diagnosed before I found this site, but when I did, oh boy what a relief it was to have folks available for comfort and support. My story is almost exactly as Johns...as a matter of fact we were only a few months apart from our diagnosis. I have Follicular NHL-stage3-grade2-typeA-Dx June 2010. I am currently considered "stable"...never quite reached the "remission" stage. I completed 6 rounds of chemo in Dec 2010 and then started a 2 year Rituxan maint plan in Feb 2011.One Rituxan infusion every other month. I have 4 more infusions and then will go on the "watch and wait" plan. As John has said, Lymphoma is very treatable with many options to go with over the years ahead. My particular subtype is non-curable, but very manageable even when relapses occur. FNHL is known to relapse, so I'm prepared (as much as can be) in the event it does. I too am scared what the future holds, but not nearly as scared as I was when first diagnosed. If you research Lymphoma on the net, just be sure to check that the site you go to is current. So much information out there is outdated and kind of scary. I like to go to LRF...Lymphoma Research Foundation(www.lymphoma.org)...a really good current/up-dated web site. Your doctor should also have some good information to share with you. Please come back and let us know the results of your scans and what kind of treatment you might be getting. We will be happy to support in anyway needed. Best wishes....Sue (age 61)
(FNHL-2-3A-6/10)

azgrandma's picture
azgrandma
Posts: 577
Joined: Feb 2010

three years come sept i started geting sick with ovarian cancer. i had surgery in nov and started chemo in dec. right away it started affecting my blood. i was suppose to get 6 rounds and was only able to recieve 4 rounds of carbo taxol. i have been doing quite well except for continuing low white blood counts. i was sent to a blood specialist last month to rule out lukemia and he did al these tests , well there is no lukemina but i did come back positive for the t cell gene rearangement which i was told may be lymphoma.
i currently do not have any swollen lympth glands etc. i am just tired alot, hve not gotten all my strength back from the chemo surgery etc.
do you have symptoms etc?
i am an anxious person and now really anxious.
i do know that my Heavenly Father still heals today and i am asking all who pray to please pray for me. I am expecing good results when i get my scan,
i am praying they will find nothing wrong and that the test was a false positive.

hugs to all
Lynda
ps, thanks for making me feel so welcome, it means alot

Toughasnails
Posts: 12
Joined: May 2012

Lynda,

The but... Is stress is your enemy not lymphoma. I am 48, had spent 13 years married to a person who was mentally ill it came to the surface about 4-5 years in. All the stress of trying to deal with her issues and whatever exposure caused my NHL was not good for me. I got divorced in 2009 after 14 months of separation a huge optimist I still believed in love. I met the greatest woman ever in January 2010 and we fell in love, we were living together thought who needs marriage but in time we decided to marrry, I asked her on 1/14/12 and 9 days later I was being diagnosed. So we hardly got a chance to enjoy the engagement glow and I was being scanned, poked and probed. I was scared I had to go home and tell this amazing person that after waiting until she was 47 to get married that I may have leukemia fortunately it was only lymphoma. We will marry on 1/12/13!

You can be scared but only for a moment you are a survivor you know the drill positive attitude is the way to tame this beast known as cancer. The treatment is what it is chemicals and side effects. I had many so far the riggers from the rutuxian, the constipation, the brick in your tummy after treatment and at the moment a little nueropathy in the finger tips. I started treatment on February 23 this year and go on a three week cycle mine is a small cell, B cell to be exact lymphoma slow growing and only in the bone marrow I had no other tutors. Some other side effects can be headaches but that may not be a surprise to you. The R chop is not as bad as the side effects of the nupergen which is for white cell boosts. Otr the prednisone. Also the sun sensitivity, I am very tan and I sit under an umbrella with heavy sunscreen on! Most forms of this disease is treatable and as in my case I was told curable. I went into remission about 6 or so weeks ago, I can go the rest of my life without a reoccurrence but will have the stem cell saved in the event my merciful God please no I should come out of remission.

Everyone is different my prayers for you ae that you have a false alarm and the scan is clean and clear. The scan is way better than the bone marrow draw I hope you are sparred. There are lots of positive people here and we like to encourage each other.

Best wishes for you and your family.

Valen

Toughasnails
Posts: 12
Joined: May 2012

Lynda,

The but... Is stress is your enemy not lymphoma. I am 48, had spent 13 years married to a person who was mentally ill it came to the surface about 4-5 years in. All the stress of trying to deal with her issues and whatever exposure caused my NHL was not good for me. I got divorced in 2009 after 14 months of separation a huge optimist I still believed in love. I met the greatest woman ever in January 2010 and we fell in love, we were living together thought who needs marriage but in time we decided to marrry, I asked her on 1/14/12 and 9 days later I was being diagnosed. So we hardly got a chance to enjoy the engagement glow and I was being scanned, poked and probed. I was scared I had to go home and tell this amazing person that after waiting until she was 47 to get married that I may have leukemia fortunately it was only lymphoma. We will marry on 1/12/13!

You can be scared but only for a moment you are a survivor you know the drill positive attitude is the way to tame this beast known as cancer. The treatment is what it is chemicals and side effects. I had many so far the riggers from the rutuxian, the constipation, the brick in your tummy after treatment and at the moment a little nueropathy in the finger tips. I started treatment on February 23 this year and go on a three week cycle mine is a small cell, B cell to be exact lymphoma slow growing and only in the bone marrow I had no other tutors. Some other side effects can be headaches but that may not be a surprise to you. The R chop is not as bad as the side effects of the nupergen which is for white cell boosts. Otr the prednisone. Also the sun sensitivity, I am very tan and I sit under an umbrella with heavy sunscreen on! Most forms of this disease is treatable and as in my case I was told curable. I went into remission about 6 or so weeks ago, I can go the rest of my life without a reoccurrence but will have the stem cell saved in the event my merciful God please no I should come out of remission.

Everyone is different my prayers for you ae that you have a false alarm and the scan is clean and clear. The scan is way better than the bone marrow draw I hope you are sparred. There are lots of positive people here and we like to encourage each other.

Best wishes for you and your family.

Valen

Toughasnails
Posts: 12
Joined: May 2012

Lynda,

The but... Is stress is your enemy not lymphoma. I am 48, had spent 13 years married to a person who was mentally ill it came to the surface about 4-5 years in. All the stress of trying to deal with her issues and whatever exposure caused my NHL was not good for me. I got divorced in 2009 after 14 months of separation a huge optimist I still believed in love. I met the greatest woman ever in January 2010 and we fell in love, we were living together thought who needs marriage but in time we decided to marrry, I asked her on 1/14/12 and 9 days later I was being diagnosed. So we hardly got a chance to enjoy the engagement glow and I was being scanned, poked and probed. I was scared I had to go home and tell this amazing person that after waiting until she was 47 to get married that I may have leukemia fortunately it was only lymphoma. We will marry on 1/12/13!

You can be scared but only for a moment you are a survivor you know the drill positive attitude is the way to tame this beast known as cancer. The treatment is what it is chemicals and side effects. I had many so far the riggers from the rutuxian, the constipation, the brick in your tummy after treatment and at the moment a little nueropathy in the finger tips. I started treatment on February 23 this year and go on a three week cycle mine is a small cell, B cell to be exact lymphoma slow growing and only in the bone marrow I had no other tutors. Some other side effects can be headaches but that may not be a surprise to you. The R chop is not as bad as the side effects of the nupergen which is for white cell boosts. Otr the prednisone. Also the sun sensitivity, I am very tan and I sit under an umbrella with heavy sunscreen on! Most forms of this disease is treatable and as in my case I was told curable. I went into remission about 6 or so weeks ago, I can go the rest of my life without a reoccurrence but will have the stem cell saved in the event my merciful God please no I should come out of remission.

Everyone is different my prayers for you ae that you have a false alarm and the scan is clean and clear. The scan is way better than the bone marrow draw I hope you are sparred. There are lots of positive people here and we like to encourage each other.

Best wishes for you and your family.

Valen

Toughasnails
Posts: 12
Joined: May 2012

Lynda,

The but... Is stress is your enemy not lymphoma. I am 48, had spent 13 years married to a person who was mentally ill it came to the surface about 4-5 years in. All the stress of trying to deal with her issues and whatever exposure caused my NHL was not good for me. I got divorced in 2009 after 14 months of separation a huge optimist I still believed in love. I met the greatest woman ever in January 2010 and we fell in love, we were living together thought who needs marriage but in time we decided to marrry, I asked her on 1/14/12 and 9 days later I was being diagnosed. So we hardly got a chance to enjoy the engagement glow and I was being scanned, poked and probed. I was scared I had to go home and tell this amazing person that after waiting until she was 47 to get married that I may have leukemia fortunately it was only lymphoma. We will marry on 1/12/13!

You can be scared but only for a moment you are a survivor you know the drill positive attitude is the way to tame this beast known as cancer. The treatment is what it is chemicals and side effects. I had many so far the riggers from the rutuxian, the constipation, the brick in your tummy after treatment and at the moment a little nueropathy in the finger tips. I started treatment on February 23 this year and go on a three week cycle mine is a small cell, B cell to be exact lymphoma slow growing and only in the bone marrow I had no other tutors. Some other side effects can be headaches but that may not be a surprise to you. The R chop is not as bad as the side effects of the nupergen which is for white cell boosts. Otr the prednisone. Also the sun sensitivity, I am very tan and I sit under an umbrella with heavy sunscreen on! Most forms of this disease is treatable and as in my case I was told curable. I went into remission about 6 or so weeks ago, I can go the rest of my life without a reoccurrence but will have the stem cell saved in the event my merciful God please no I should come out of remission.

Everyone is different my prayers for you ae that you have a false alarm and the scan is clean and clear. The scan is way better than the bone marrow draw I hope you are sparred. There are lots of positive people here and we like to encourage each other.

Best wishes for you and your family.

Valen

Toughasnails
Posts: 12
Joined: May 2012

Lynda,

The but... Is stress is your enemy not lymphoma. I am 48, had spent 13 years married to a person who was mentally ill it came to the surface about 4-5 years in. All the stress of trying to deal with her issues and whatever exposure caused my NHL was not good for me. I got divorced in 2009 after 14 months of separation a huge optimist I still believed in love. I met the greatest woman ever in January 2010 and we fell in love, we were living together thought who needs marriage but in time we decided to marrry, I asked her on 1/14/12 and 9 days later I was being diagnosed. So we hardly got a chance to enjoy the engagement glow and I was being scanned, poked and probed. I was scared I had to go home and tell this amazing person that after waiting until she was 47 to get married that I may have leukemia fortunately it was only lymphoma. We will marry on 1/12/13!

You can be scared but only for a moment you are a survivor you know the drill positive attitude is the way to tame this beast known as cancer. The treatment is what it is chemicals and side effects. I had many so far the riggers from the rutuxian, the constipation, the brick in your tummy after treatment and at the moment a little nueropathy in the finger tips. I started treatment on February 23 this year and go on a three week cycle mine is a small cell, B cell to be exact lymphoma slow growing and only in the bone marrow I had no other tutors. Some other side effects can be headaches but that may not be a surprise to you. The R chop is not as bad as the side effects of the nupergen which is for white cell boosts. Otr the prednisone. Also the sun sensitivity, I am very tan and I sit under an umbrella with heavy sunscreen on! Most forms of this disease is treatable and as in my case I was told curable. I went into remission about 6 or so weeks ago, I can go the rest of my life without a reoccurrence but will have the stem cell saved in the event my merciful God please no I should come out of remission.

Everyone is different my prayers for you ae that you have a false alarm and the scan is clean and clear. The scan is way better than the bone marrow draw I hope you are sparred. There are lots of positive people here and we like to encourage each other.

Best wishes for you and your family.

Valen

azgrandma's picture
azgrandma
Posts: 577
Joined: Feb 2010

i remember well the side efects of chemo. God was with me and helped me each step of the way.i remember when i had to get blood i was freightened but he saw me though it. when i had to get ht neupagen shots four times a week for several weeks was hard but i came out stonger than i was before.
i believe in God and i know for sure he still heals today.
so glad to have found you all
hugs lynda
Valen i sure am praying you stay in remission i think we all want to live and be with our loved ones, i know i do.

i have lost 2 sisters to this horribe dissease

azgrandma's picture
azgrandma
Posts: 577
Joined: Feb 2010

i remember well the side efects of chemo. God was with me and helped me each step of the way.i remember when i had to get blood i was freightened but he saw me though it. when i had to get ht neupagen shots four times a week for several weeks was hard but i came out stonger than i was before.
i believe in God and i know for sure he still heals today.
so glad to have found you all
hugs lynda
Valen i sure am praying you stay in remission i think we all want to live and be with our loved ones, i know i do.

i have lost 2 sisters to this horribe dissease

allmost60's picture
allmost60
Posts: 3162
Joined: Jul 2010

Hi Lynda,
The only symptom I had was a lump on my groin and one on my neck. Neither lump was sore or tender to touch. No loss of weight, night swets, fever, fatigue, etc. I felt great. The last thing I expected to hear was "Cancer". I'll keep you in my prayers for a clean scan.
Best wishes...Sue
(FNHL-grade2-stage3-typeA(non-symptomatic)-Dx 6/10-age 61)

anliperez915's picture
anliperez915
Posts: 747
Joined: Sep 2011

Hi Lynda,
Wanted to say hi and to welcome you to the group. Hoping and praying that your results are clean and that it was just a false alarm. I was diagnosed a year ago but was told by my Oncologist that I had it for a year before I got diagnosed. I didn't have symptoms, felt fine was going to the gym and dancing to zumba! The only thing that my Dr. noticed was my White blood cells that were really high, around 69% almost triple the amount that it should be. I did have tumors in spleen, liver and bone marrow involvement, was diagnosed with Splenic Marginal Zone Lymphoma stage 4. I was told by my Onc that my lymphoma is not curable but very treatable. I have been lucky since I've only had Rituxan for treatment in Feb. and will start another round of treatment in July 19th once a week for 4 weeks.
I will be keeping you in my prayers, please keep us posted on what the Doctors say.

Sincerely,
Liz

azgrandma's picture
azgrandma
Posts: 577
Joined: Feb 2010

thanks to al who anwered it makes me feel good.
after chemlo i was having issues with white count being very low. after numerous shots of neupagen and neulasta and after 2 and a half years it is finally coming up it is now 5.0 on the white counts.
i hate this disease
Hugs to all

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