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Just diagnosed with Classic Hodgkins Lymphoma

MyJourneyin2011's picture
MyJourneyin2011
Posts: 9
Joined: Mar 2011

I am 42- have been married almost 19 years- I have 5 children and I love life- more now than ever. Each day is a little scary.. so many things. FNA, Cervical lymphnode removal, Bone marrow biopsy- and am scheduled for PET scan, echo, pulm. function test... the list goes on. Then chemo- and hair loss... WOW. I thought my life was busy before...

I am a christian- and have faith that things will turn out the way they are supposed to- but believing that and experiencing the unknown each day is still a hard line to walk. I am in unfamiliar ground and a bit unsure.

Any suggestions on what I should do? Where I should go? Read? Listen? Research?
Amy

COBRA666's picture
COBRA666
Posts: 2413
Joined: May 2010

Amy,
First let me say welcome to a place that I know you do not want to be,but being here was a wise choice. You will find nothing but support from everyone here. I know how you are feeling. Just like you I was right where you are now. Just like everyone here at one time. First I would suggest staying away from the websites. They are full of info,but there is so much it will only confuse you. We are all individuals and each of us is different in the way we react to any treatment. It sounds from the way you are talking a diagnosis is not yet complete. Just keep in mind it is a disease that is treatable. You will have to be graded and staged to complete the diagnosis. It is hard to do but try not to worry yourself sick. I am not saying its nothing to worry about,because it is. It is all serious,but keep in mind it is treatable. I went thru everything you were just talking about and was diagnosed with follicular non hodgkins grade 1 stage 4 because of bone involvement. I am currently in remission. Stick with us and keep us updated with any diagnosis update . We will be here for you and help you thru this. John

allmost60's picture
allmost60
Posts: 3184
Joined: Jul 2010

Hi Amy,
Sounds like you still have alot of testing to be done. I think the testing and waiting for results was the hardest part of my cancer journey so far. Not to say the treatment months weren't rough, but waiting for test results really messed with my head. I have Follicular NHL-indolent-stage3-grade2-typeA and was diagnosed in June, 2010. If you click on my picture in the blue box you can read my "about me" page which details my cancer journey thus far. Welcome to our group Amy, and I'll keep you in my prayers while you go through the process of getting staged and a treatment plan lined up. Someone is always here to lend support and comfort and answer questions you may have. Best wishes...Sue (FNHL-2-3A-6/10)

MyJourneyin2011's picture
MyJourneyin2011
Posts: 9
Joined: Mar 2011

Sue,
Thank you for your post. You story is very encouraging - I appreciate your kind words and your advice. It is overwhelming - but it helps to know that there are people out there that understand and that have been there. I look foward to being a part of this group. Amy

COBRA666's picture
COBRA666
Posts: 2413
Joined: May 2010

Amy,
I was waiting for Sue to reply. She's my buddy.We have been refered to as the CSN Welcoming Duo in the past.LOL. As I was saying before be sure to let us know what you find out. That way we know more how to guide you.We will always be here for support. John (FNHL-1-4A-5/10)

MyJourneyin2011's picture
MyJourneyin2011
Posts: 9
Joined: Mar 2011

Thank you John- I really appreciate your support. I look foward to being a part of this group. Reading everyones experiences - has made this a little less scary. I am looking foward to the day - that this will be in the past- not the future!! Thanks again- amy

honeymooners2's picture
honeymooners2
Posts: 1
Joined: Mar 2011

Hello Myjourney

My dad was diagnosed with Hodkins Disease Stage 2 nodular sclerosis. He did 4 cycles of ABVD and 17 radiation treatments. He was 69 at the the time he is 80 next year. He has been in remission for over 8 years. He is in good health has nothing wrong, he is in florida with my mom and is very active. So I hope this makes you feel better it is one of the most curable cancers. Make sure you have someone with you at the appointments to listen and take notes. Your brain goes mush when experiencing something traumatic like this its very normal to be forgetful. but hang in there there is light at the end of the tunnel. If you have any questions please ask I was very involved with my dads treatments.

MyJourneyin2011's picture
MyJourneyin2011
Posts: 9
Joined: Mar 2011

Thank you for message. That is wonderful to hear about your dad. What a miracle! And YES YES YES- I have gone to a couple of Dr. appts by myself and there are only tid bits of what I remember. I thought I should tape record- but taking someone with me is a good idea- My husband has gone to some of them but - he cant remember much more than I- (its tough for him too)- It will get better. Thank you again for your encouragement. I really appreciate it. Amy

MyJourneyin2011's picture
MyJourneyin2011
Posts: 9
Joined: Mar 2011
merrywinner's picture
merrywinner
Posts: 627
Joined: Aug 2009

Oh the memories of where you are at right now are so vivid and I think each of us here will never forget that time in our journeys.You found your way here and you will be very glad you did. The folks here are smart,caring and have a wealth of information that helps so very much. Like the others have said it would be a good idea to go slowly and get a firm diagnosis and treatment plan. Then at least you know what to research that will apply to you. It can be overwhelming to be sure but once we know that we can help and there will be people here who have the exact same thing. For the moment are there any questions you have about the tests or procedures you are scheduled for? Please remember just one thing for now. There are treatments,in many shapes, sizes and colors and best of all they work. It will just be a matter of finding the right one for you. I will look forward to hearing from you. Mary

MyJourneyin2011's picture
MyJourneyin2011
Posts: 9
Joined: Mar 2011

Mary,
Thank you so much for your advice- the replies have been so supportive. I do think waiting is a double edge sword- part of me doesnt want any more- and the other wants to get it all over with NOW! I have called insurance companies, human resourses,... it seems like there is so much to do and by the time I get home from work- I am near exhausted. I will take the advice and not dig too deep into research until I know specifics. Again- thank you so much - and this site has been such an anwer to prayer!Amy

dixiegirl's picture
dixiegirl
Posts: 1043
Joined: Apr 2006

Welcome to the group Amy. We are a bunch of wonderful people taking this crazy ride for everything it's worth. You'll find all kinds of support and humor here. I wouldn't be anywhere else. I don't have Hodgkins, but have NHL follicular stage 3 and maybe something else, I find out Tuesday afternoon. I had biopsies done Wednesday so I am also in the waiting game/testing zone. I've been around for 5 years and the waiting never gets any easier. I am trying to take everyone's advise and stay off the internet, but you know how you're suddenly there and don't remember starting the trip? That's where I am tonight.

It's ok. Welcome to our world honey!
Take care,
Beth

MyJourneyin2011's picture
MyJourneyin2011
Posts: 9
Joined: Mar 2011

Thanks for the welcome beth! I will keep you in my prayers. Since I have been diagnosed- I have heard so many testimonies. I NEVER knew there was so much out there- so many people affected. Where in the world was I before? Just clueless. I am so appreciative of the support here. My heart goes out to so many. I am glad I have a place to turn for just "company" and support.
Thank you so much!amy

miss maggie
Posts: 929
Joined: Mar 2010

Welcome,

I am so glad you found this site. The knowledge you will learn will get you through this. Out of all the sites, I have found this site to be the very best.

I know how horrible and hopeless you might have felt in the beginning. For me, I thought I would go crazy in the beginning. The depression was unbearable. But, as the weeks went by, and the more I learned, I started to feel better. There is hope in our DX. Sad as this might sound, my oncologist informed me, if you have to get cancer, this is the one to get. Can you believe it?

Good luck on all your tests. My prayers and blessings are with you. Get all the info you can, and be sure to have someone with you. Good idea if somehow you miss what the doctor says.

Love Maggie

Sub type: Extranodal marginal zone B cell NHL - remission Jan 2011

D. Maggie
Posts: 1
Joined: Mar 2011

Hello everyone, and thank you all for being here for each other. I have just joined this
group so I dont know if I am posting this in the right place. If not, please advise.
Ok, Sigh* here goes, this is the first time i am saying this out loud so to speak.
I am a 63 yer old female living in Ontario, Canada. About a week before Christmas I found a small lump on my neck just below my chin. Another one came up beside it. As it was over
the holidays it was dificult to get a Dr's. appt. The after hours clinic nurse told me I had Gingavitis and gave me anti-biotics. After 3 series of different ones that did nothing
my doctor sent me for a biopsy. The results came back inconclusive but he had found another lump on my vocal cord. I have an appt. on April 12th to have a biopsy on this one.
In the meantime, my doctor had me go for a C.T. Scan which I did a week ago Monday. The results from that say that I have a mass in my chest cavity and also in my groin (right side) WOW! now what??...............

CountryGal7557
Posts: 164
Joined: Feb 2011

Hi Amy, here are some answers & a couple suggestions on what to do while you wait...

suggestions on what I should do?
Bring someone with to all appointments to take notes.
http://www.cleaningforareason.org when you start treatments, ask for help with cleaning.

Where I should go? Trust your Oncologist, if not then seek a 2nd opinion. Go with your gut instincts, you know your body best. Ask you Onc. if s/he attends that latest NHL conferences and stays abreast of the cutting edge, if not, then seek out someone who does!

Read? The Roller Coaster Chronicles by Betsy de Parry (Paperback - Jan 21, 2005)
My own personal Journey is documented: http://lifeisgood2010.wordpress.com/ please leave me a message if this helps, it helped another blogger on this site.

Listen? to your heart on what to do and to your favorite music or pick up a new artist. I chose Enya while at infusion so I wouldn't have to listen to the machines pumping and Ocean Sounds like Relax (I'm listening to it right now as I type this). I got hooked on these relaxing sounds....
Listen to the support group on this site...these people have been there, walked the walk, talk the talk....
If your Onc. suggests Bendamustine (Treanda) and Rituxan, know that you won't loose your hair!! and watch this video : http://www.youtube.com/watch?v=rEDNldZeYfE&feature=related

Research? only valid sites, like this one cancer.org, or clinics like Mayo Clinic, and others across the country. there is too much old (even 5 years is old) and what you'll read will creep you out, so stay away from surfing the internet and trust your oncologist, this site and reputable clinics.

I hope this helps and welcome to the group!
Janelle

truckingalong
Posts: 444
Joined: Aug 2010

Hi Amy,

Glad you found this site. When I found out I have Hodgkins back in August 2010 I too went through exactly what you are going through now. Scary and so full of questions then no time to do much preparation when I had to get mediport implanted and had all the tests before having the chemo. It had been very overwhelming. We just have to work harder to think positively and there are rewards from this process. Thank god, I have a very supportive husband (of 36 years) and people who expressed their concerns - same with this site. I am 54 and grateful for each day that I can do many things because after 12 chemo treatments - last one was on Jan 25th and my recent scan showed that I am clean of cancer. I wish you much luck along the way and take it a day at a time.

Liz

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