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ACTIVE_AT_60's Photo ACTIVE_AT_60 Posts: 3,068
9/26/10 7:26 A

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That is one of the reasons why 'spokes of hope' was formed. spokesofhope.blogspot.com

FRAN641's Photo FRAN641 Posts: 1,273
9/26/10 12:26 A

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Thanks for that great advice Jan. That will be my goal through this stuff.


Fran
A sense of humor keeps things in perspective for me.


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ACTIVE_AT_60's Photo ACTIVE_AT_60 Posts: 3,068
9/25/10 4:02 P

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Fran, keep your humor, keep exercising, keep living healthy. Let your lymphoma know who is in control. Don't let it be an identity thief.

JWARD199's Photo JWARD199 Posts: 2,493
9/25/10 8:34 A

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Fran, it is totally understandable that you will experience emotional swings as you go on your journey. It is not easy being the patient. Your positive attitude and your willingness to talk about it here and with your loved ones will help you get through it.

My thoughts are with you.



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FRAN641's Photo FRAN641 Posts: 1,273
9/25/10 7:52 A

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This has turned into a weird journey. Yesterday DH and i were at a local Bluegrass Festival. One of the display tents was a Relay For Life. This sweet lady came over and was telling us that she makes hats for cancer patients and did we know any. We both burst out laughing and he pointed to me and said "yeah, her". We were the only ones standing around and she proceeded to tell me about what Reach for Recovery could do for me. I went from giggling to tears in a split second! The pendulum of my emotions just shocked me. She was talking about ME being the patient! When I go to the hematologist on Oct. 6 maybe some of that will calm down. It doesn't happen often (usually alone in the car) and I usually have a very positive attitude and treat it with humor a lot. Just another day in the life of a new journey.


Fran
A sense of humor keeps things in perspective for me.


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FRAN641's Photo FRAN641 Posts: 1,273
9/19/10 3:54 P

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Thanks for the site Nancy. I go to the LLS boards too. I'll check out Lymphoma.com today. Have a great day.


Fran
A sense of humor keeps things in perspective for me.


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NANCYLAPEACH's Photo NANCYLAPEACH SparkPoints: (8,546)
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9/19/10 3:21 P

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I appreciate the support, too. Write to me any time. There is also a good support network at Lymphoma.com. They have a message board and some of the people there are really knowledgeable. If you have time, check it out.

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FRAN641's Photo FRAN641 Posts: 1,273
9/19/10 8:04 A

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I don't have those symptoms either but docs have been chasing lumps for quite a few years. All the biopsies have come back negative until this last one. But my thermostat is so messed up. I'm hot then cold all day long. I thought it was my thyroid or hormonal but I haven't had hot flashes for many years. So I don't have a clue if the sweats/cold is related to this or not. I don't want to fall into the thinking that everything I feel is lymphoma related but what the heck do I know about any of this stuff. I'll be learning all about it soon. Thanks so much for your responses. It's good to know I'm not alone out there.


Fran
A sense of humor keeps things in perspective for me.


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NANCYLAPEACH's Photo NANCYLAPEACH SparkPoints: (8,546)
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9/18/10 7:34 P

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This was a hard week for me. I get these flu-like symptoms, although I feel like I have a fever, I never get one. I get the chills, achy, and so tired I can barely pick my head up. No night sweats. The doctors keep asking me about night sweats. I tell them, I get any time of the day or night sweats. My thermostat is different than everyone else's. So, I leave them scratching their heads a lot. I haven't started treatment. They only treat the low grade fnhl if you are symptomatic. I wasn't convinced I was having symptoms. I knew I felt crummy but I was afraid I was exaggerating it. I just had my second pet scan and a second opinion from a doctor at HUP. She actually was in agreement with my oncologist- right down to the scratching her head part. I think I will start treatment soon. Probably Rituxan and (maybe) Bendamustine. I am keeping my fingers crossed - for both of us.

Edited by: NANCYLAPEACH at: 9/18/2010 (19:36)
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FRAN641's Photo FRAN641 Posts: 1,273
9/18/10 3:27 P

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Nancy, other than the high grade we have the same dx. Have you been treated yet? If so what kind of treatment? I hope you are feeling OK but I know this waiting is a bummer. I'm glad to get in to see the exact onc my surgeon wanted me to see though it took longer. Thanks for writing.....


Fran
A sense of humor keeps things in perspective for me.


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NANCYLAPEACH's Photo NANCYLAPEACH SparkPoints: (8,546)
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9/18/10 10:03 A

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Hi. Sorry that you are going through this. I have low grade b cell follicular NHL. I was just diagnosed in May and I am still pretty freaked out. Waiting is horrible. Sending good thoughts, prayers, and a hug your way! Be extra nice to yourself.

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FRAN641's Photo FRAN641 Posts: 1,273
9/15/10 11:30 A

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I found out today that my first oncology appt. is Oct 6. So for 20 days I'll clean the house top to bottom and promise to visit it again after all this is settled down. The cancerous lymph node that they already know of is in my rectum so I surely don't cherish the thought of radiation there!!! OUCH Wish I had the nerve to tatoo something funny back there just for the doc. But I'm old and wrinkled so it probably wouldn't even show up!! lol I have to laugh through this stuff at least for now. Thanks for being there today.


Fran
A sense of humor keeps things in perspective for me.


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JWARD199's Photo JWARD199 Posts: 2,493
9/15/10 7:35 A

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Fran, I'm sorry to hear the definitive diagnosis. I hope all goes well with your treatment. My thoughts are with you. Keep us informed of your progress on your journey.



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DJS-DEBBIE's Photo DJS-DEBBIE Posts: 9,577
9/15/10 7:23 A

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Sending lots of good thoughts your way, Fran. I am sure LLS will be a great help for you.
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FRAN641's Photo FRAN641 Posts: 1,273
9/14/10 10:37 P

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Well I found out today that I definitely have high grade B cell follicular non hodgkins lymphoma. Next step is the oncologist's office. Thanks for all your information so far. Surgery, chemo, radiation are all options, not sure which will be recommended for me yet. I'll contact LLS this week and see where that goes. The journey begins.....


Fran
A sense of humor keeps things in perspective for me.


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