I'm a new poster!

[Penni]

Hi, I'm 53 years young. I was diagnosed with non hodgkins lymphoma, low grade, B cell type on 12/06/2011. I'm currently waiting to see an Oncologist/Hematologist to learn about staging and treatment. My paper says my diagnosis includes small lymphocytic lymphoma and marginal zone lymphoma. It's all another language to me. At the present time, I have a sister with stage IV, inflammatory breast cancer, and we're praying for a miracle.

I would like to talk to others about symptoms and treatment. I'm hoping to be able to learn and be as supportive as I can at a very difficult time in life.

[Didee]

Hi Penni. Welcome to the forums.
I am sorry to read of your diagnosis....Merry Christmas, eh? ( I was told my diagnosis 16 dec 09)

Come on down to the lymphoma forum.
We have a great crew there with knowledge and support.

[Penni]

Thank you Didee for your response. I don't know how to go to the lymphoma forum. Can I type that in the advanced search bar and go there?

[Knightly]

You can get to the lymphoma forum here.

Welcome, and good luck in your fight, Penni.

[TrueYouTrueMe]

Hi Penni. Sorry to hear about your diagnosis. I also was diagnosed this month (12/13/11) but with Lung cancer (NSCLC) and so I am new to the forum here like you. I also live in PA and work in East Brunswick, NJ similiar to you so I figured it might be good to say hello.

I wish you all the best as things move along for you and your sister both. I certainly can relate to how tough this must be for you both right now.

Good luck,

Garry

[Penni]

Hi Penni. Sorry to hear about your diagnosis. I also was diagnosed this month (12/13/11) but with Lung cancer (NSCLC) and so I am new to the forum here like you. I also live in PA and work in East Brunswick, NJ similiar to you so I figured it might be good to say hello.

I wish you all the best as things move along for you and your sister both. I certainly can relate to how tough this must be for you both right now.

Good luck,

Garry

Garry,

Thank you for your response. I wish I would have gotten back to you sooner. I had a birthday yesterday, and the Cancer Forums sent me a card. This reminded me of this sight. I got on and found your response.

I hope everything is well with you. Are you in treatment? Do you have support around you? What a shock it is to learn that you have cancer. I thank you for your concern about my sister. She will always be on chemo for the rest of her life. There is no chance of remission according to her Doctor, but we will see. Everyday is a battle for her, but we're thankful for this time with her.

We have a lot in common regarding our jobs and health. I've been traveling 3+ hours to work every week for 5 years. I was diagnosed with stage IV non hodgkin's, but it is slow growing. My Doctor wants to begin immuno-therapy. I need to get a blood test completed next week. What stage is your cancer? Are you still working? I really hope you get this note.

Peace & Good Luck,

Penni

[Didee]

Reposting the link that Knightly did so you can find the lymphoma forum.

http://www.cancerforums.net/forums/1...Lymphoma-Forum

[ChemoMan]

Hi Penni

First off welcome and sorry you had to find us, i hope we can help in some way. i have taken the liberty to move this to the lymphoma forum, but i have left a permanent redirect here so you can find the thread.

Cheers

[Penni]

I think I'm posting in the correct place now. I've been reading here, and it's so helpful to me. I guess I never realized how cancer affected people. I'm sorry for my ignorance. I guess I was oblivious like so many people I know and this includes people with cancer. I thank both Didee and ChemoMan for trying to help me in posting and also for their stories and courage. I wish I could express how hard it is for me to watch and wait. I've had people tell me that my cancer is like the common cold and not serious. Other people tell me, "It can't really be cancer if it doesn't require chemo." Then, the Doctor says it's stage IV, and my head spins around. Wow, this is confusing. I'm unable to speak about this to my family (Brothers and Sisters); because, it upsets them. I have a sister with stage IV breast cancer. My husband and children panic when I discuss cancer with them. There is no one to talk too, and this is why I'm thankful for this sight. I don't feel like I'll be judged or made to feel ashamed because I have some weird cancer that is like a common cold. My family has never heard of watch and wait; they think this is some ridiculous thing that I've misunderstood. My primary diagnosis is Nodular lymphoma, multiple sites, but my test results say SLL. It is not in my bone marrow, and I don't have B symptoms. I think the stage IV is from the cancer being in the lymph's under my arms, in my groin, throughout my abdomen and in my spleen. My Oncologist has suggested to my GP that supplemental immunoglobulin might be helpful to me; because, I was very sick for months this past winter. I have to go for more blood work. I didn't get this blood work; because, I didn't realize that it was required. My Oncologist was not clear in his directions. I had to learn this from my GP. He, like others in my life, made me think that the cancer was no big deal. So, I will get the blood work this week. Can anyone explain supplemental immunoglobulin to me? Thank you for listening.

[carolynjl]

Hi Penni, This is a cancer that is hard to get your mind around, and our natural instinct when we hear the word cancer is "Do something!" so watch & wait isn't a very satisfying approach. Your famiy is scared, and don't want to face it, but they will come around - it takes some time for the reality to sink in. I'm 18 mo. into watch & wait, and my family is NOT happy with this approach. But for me, I'm just trusting God and my Oncologist at Duke. If you don't mind some advice, I'd recommend you go to a large medical school hospital and have all your current test sent to them for re-evaluation. My local oncologist and hemotologist & lab misdiagnosed on several levels! After Duke re-evaluated, and found the errors, I felt much more confident I could trust the treatment they advised, even though I was also reclassified as stage 4, because of bone marrow involvement. It's a 4 1/2 hour trip to Duke, but I only go every 3 mo. and it is worth it.

As for people telling you your cancer is like the common cold and not serious, they are idiots - pay no attention to them. If it was them they certainly wouldn't feel that way! The only thing NH Lymphoma has in common with the cold virus is that they are both incurable, at this time. As for those who say it isn't really cancer if it doesn't require chemo, they are just uninformed. It will require chemo at some point and time, but this is slow growing cancer cells - most chemo is designed to attack fast growing cancer cells. But this is a very common cancer which is good, because with lots of potential customers, a lot of research is being done to find better treatments, or even a cure. My doctor said because it is slow growing and I'm not having serious symptoms, it's better to hold off on any treatment (which has side affects) and let me enjoy a better quality of life, until the time comes when my symtoms are worse that the side affects of treatment. That's kinda a simplified version of what she told me, but I'm comfortable with the watch & wait, BECAUSE I have confidence in my doctor.

As for your sister, I'm very sorry about her diagnosis, BUT I want to tell you about my sister-in-law. She was diagnosed 6 years ago with a very aggressive form of breast cancer which had metastacized to her lymph nodes - stage 4. Her doctor gave her 3 years max to live. Then it metastasized to her bones. She told her doctor she wanted to be treated aggressively, which means she's had radiation and chemo the whole time with brief periods off to let her body rest. But as of her last 2 test, including PET scan, she is in total remission, which means they cannot find any sign of cancer. I know everyone is different, but please encourage your sister with Kelly's story.

We must rely to a great extent on doctors, but they don't know everything, and there are many other factors that play a part: optismistic attitude, your faith in God's healing power, encouraging support from family and friends, overall health, and possibly diet & exercise. I'm really sorry you and your sister, and your whole family are having to go through this - it isn't where any of us wanted to be. But life is sweet and precious - try not to focus on your cancer, and focus instead of all the wonderful blessings you have - and you and your sister enjoy each other! God bless.

[Penni]

Hi Carolyn,

Thank you so much for your sincere reply. I am currently going to Fox Chase Cancer Centers which is a 3 1/2 hour drive. I am considering going to the University of Pennsylvania for a reevaluation; although, I realize that I have a good Doctor. He just wasn't explaining things to me in a way that I understood. We have cleared up some of the confusion, and I feel more confident. I think I'm finding a better attitude about all of this after a long journey. I wish I could say that my sister was physically doing better, but it seems that the last 4 chemo's haven't worked for her. The cancer is all throughout her abdomen, chest and spine. Her life is in the Lord's hands, and she is at peace. She is being treated at a large medical school, and they are not done trying yet. I will pass your sister in laws story on to her, and I agree that I need to focus more on the blessings in my life and not on the cancer. Thank you for your words of encouragement, and I will keep you in my prayers.