Lymphoma (Hodgkin and Non-Hodgkin)
Discussion List
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the plan
Well I saw rad doc friday. Did CT and got my tattoos. He said it has grown since scan in June. Start treatment on wed. Not sure exactly how many yet but probably 4 weeks. I will be glad to get it gone. This armpit has been a target for too long. I am praying for miss denise. I hope she gets better soon.
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Onc changes gameplan unexpectedly... a good thing?
Yesterday I had R-CHOP chemo 6 of 8... my nerves had certainly got the best of me, and I nearly fainted in the lab.. you know, making a general fool of myself. Well, I saw the oncologist, and he was acting funny.. just nothing felt right about our visit. He upped my chemo doses and sent me off to the infusion center. Next…
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Update for my Mom, Denise
Thank you all for your prayers and kind words. As of right now my mom is still heavily sedated and is on the ventilator. They are getting secretion out of her lungs though, that's good. Also they are talking about trying to stop sedation and pull the tube out and see if she can breathe on her own. The doctors are not…
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Kim..Please keep us up to date
Kim, Please keep us informed about your mom, Denise. She is part of our family here and we all worry about her. John
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SGN35 and GOD
Im on round 6 , technically round 8 but the other two were limited study..anyways. About 5 weeks ago I had a dream or heard a voice tell me that I only have 7 weeks to go and every since then I have been feeling like a champ. If in 2 weeks im told im in remission I will come back and say you heard it hear first. Pray does…
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Good News after my 3 cycle....MIRACLES DO HAPPEN...
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PLEASE EVERYONE PRAY FOR MY MOM "SCUTTLEBUG 11" (Denise)
Please everyone pray for my mommy. She had a stem cell transplant done a couple of weeks ago and yesterday she took a turn for the worse. She is currently being intabated for respiatory distress, and she has pneumonia and we all know how bad that is. This is her oldest daughter Kim, and I know prayers work and they tend to…
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First Scan since Stem Cell Transplant
As many of you know I had an auto stem cell transplant back in June. Today I head to my first scan since the transplant. I would be lying if I said that im not nervous and anxious. Many of you have been there for me through the procedure and I owe it to you to keep you informed of the results. Thank you all for your loving…
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Switching epoch-r to R-chop
Hello, I m knew to the network. I was recently diagnosed with PMBCL and received 4 courses of EPOCh-r. My pet scan after the 2nd one was negative. I had a very hard time with therapy in terms of severe nausea despite all sorts of meds us started to worry about side effects of etoposide such as leukemia down the road, which…
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Stem Cell Collection
My husband has been summoned for stem cell collection! It was an unexpected call from Mayo today but it makes me happy. Little steps... Had to move into high gear to get him transportation to Rochester since we live in Milwaukee. All plans are set. He's not quite ready though since it was so out of the blue. He knows it's…
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Lisha...Any updates???
Lisha, Just wondering if you have any updates. Hope you are feeling better with a little more energy. John
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another long day
another long day, it started 8am, first i had labs drawed next i had fluids ,thxen i had platelates. the nurse imformed me that if i eat more i wouldnt need so much fluds ihave decided just to put food in my mouth and swallow. blessings denise
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John..(Cobra666...caught your fish!!!
Hey buddy... I caught your fish this morning...it wasn't a "big salmon" like I wanted, but a nice 7 pound steelhead will have to do. I caught a 12 pounder also, but it was wild and had to be thrown back :( Anyways...I'm so glad you are home and now finished with your Rituxan maint. When is your follow up scan? Mine is in…
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Looking for other patients experiences with NLPHL
My brother started treatment for IVa NLPHL in December of 2011 He received 6 cycles of r-abvd. Treatment ended in late June, results of pet-scan at that time showed slow growth in the right axillary still. Doctors recommended wait and watch until September, so here we are. Went to the Doctor for yet another pet-scan and…
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Update after delay of contact
Hi all, It's been quite awhile since I sent any updates. Like quite a few that have posted, I don't know what to say, or am reluctant to put it in words--or I don't know; just doesn't seem so bad, compared to what others are going through ----Just had my Rituxan Wednesday, 9/19; I'm currently on maintenance Rituxan, every…
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New picture...
Hi Guys, I posted a picture(expression gallery) of where we stay on the river...it's really a beautiful area! Tonight I stood out on the deck and the moon was straight across the river and was the most brilliant bright orange I've ever seen. We were told the bright orange color is caused from all of the smoke in the air.…
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Reoccurring Non Hodgkins
Today was a stressful day. In July, 2008 I was diagnosed with Non Hodgkins Lymphoma. I successfully completed R-CHOP and radiation. I had been in remission almost 4 years. Then the lymphoma returned~this time in my back. I have a PET scan tomorrow and the will start chemo. After chemo a stem cell transplant. Has anyone…
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Sidelined!!!
Dang!!! Things were going so well until I went for my blood work on Tuesday. Turns out my white blood count is too low and so no chemo yesterday. They will phone me to set up more bloodwork and my next chemo. It plain sucks! So, now I'm home and trying to avoid going out anywhere there might be a crowd.
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add another doc to the list
My doctor agrees with me that the rituxan isn't working. So next Friday I have an appt with my radiation onc. Hopeful for less than 3 weeks. Cancer Sucks guys. But at least lymphoma responds to radiation well. Maybe give the armpit a break. thanks for all the good vibes!!!
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dr appt
Have appt fri 28th with rad doc.
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John...Friday last Rituxan!!!
Hi John, Just wanted to say "Good luck" and "YIPPEE"...tomorrow will be your last Rituxan infusion!!! I'll be on the river fishing all day tomorrow, so I wanted to be sure and let you know how happy I am for you. Oct-Dec-Feb and then I will be done also!!! Man...the time has flown by...I remember the fall of 2010 and we…
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scuttlebug..(Denise) How are you??
Hi Denise, We haven't heard how you are doing since last Friday? Did everything go well with getting the stem cells put in. I continue to pray everything is going good for you and hope you've been able to visit with your daughter Amanda. Check in when you feel up to it dear friend. Much love...Sue (FNHL-2-3a-6/10)
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Hey max
I'm sorry I've been a bit scarce lately, just been lurking. Getting the results of my first in treatment ct scan in a few hours so I will post them straight away. Sometimes I read what others are enduring max and I can't bring myself to post my trivial pissings and moanings. The truth is I'm getting through this pretty…
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Thinking of you, Beth
Hi Beth I just wanted to let you know that I am keeping you close in my heart today. I am praying that you will receive some long overdue positive news. Whatever you do find out, I am here for you and I am holding your hand through these difficult days. Huge hugs across the miles and positive healing always (((hugs))) Lisha
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the opposite of snark
surprisingly, despite all the temptations (politics!! the internet!! the newspaper!!) to indulge in a large and loud bout of cynicism, this quote grabbed me today: "...Happiness is not happiness unless it is shared. For happiness is the one thing in all the world that comes to us only at the moment we give it, and is…
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Has anyone participated in a clinical trial at the NCI/NIH campus?
I would love to hear your experiences. It's been suggested my husband might be a good match for a clinical trial being held at NCI/NHI here in DC. He is still in the staging process although they "suspect" he has an indolent type of MCL. We will know more after BMB (today...I hope it's not terrible!) and PET scan next…
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New photo
I have a new photo on my expression page of my grandson.
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all good!
OK I took everyones advice, (and my wife's lol), and made my appointment for today. Great news my oncologist said that it is lipoma, just fatty tissue that settled in my shoulder. She is not concerned, as these never turn out to be cancer. Thanks for all the support as always!!!! Vinny
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Magic Mouthwash
Hello all-- I hope things are well in your corner today.. Things are on an upswing over here, I can feel it.. at least for this split second! I have been having a problem.. for the last three days I have had thick mucous, painful tongue and difficulty swallowing. I'm guessing I have a mouth sore, or maybe bit my tongue in…
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Has anyone decided not to do Rituxin maintenance?
I just finished radiation and chemo with Rituxin for Non-Hodgkins Lymphoma which presented in my femur and abdomen as well as a large tumor in my groin. My oncologist wants to put me on a maintenance program of Rituxin as well as a bone strengthener for two years, every three months. I am hesitant to do this. Rituxin will…