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Warning this is long and sad
I am at my end, I don't know how much more I can take. Many of you know my husband had a stroke and now has had 2 brain surgeries and another to remove a pick line that went thru his heart.He is home but requires 24/7 looking after. He has the mentality of a 2 year old and I don't know if it will get better. and he can get…
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Port flush
Hey everybody, I jumped right on the phone when I heard every month for the port flush. They said the flush schedule is not set in stone. Some places go every 4 months,some 2 months and and some every month. It did have me concerned as well when I read the responses. I got my power port booklet out and started going thru…
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LRF Conference
Hi All, Just returned on Monday from the 3 day lymphoma conference in SF and as usual it was very informative. This years conference was about 50% smaller in attendance than two years ago but still great to be around 300 lymphoma survivors. Wanted to let all of you with fNHL know there are lots of new therapies on the…
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New Doctor
Hi all, What a morning! Started calling the clinic at 8:00 and I'm glad to report that I now have a new doctor. Don't have a clue who he is or what he will be like, but at least I can say I "have" a doctor"...ha! Needless to say the clinic was obviously overwhelmed with patients calling in, but after 4 hours of waiting my…
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Onc visit
On my way back from the LRF conference I had an appointment with my Hemo/Onc specialist at UCSF. He is very knowledgable about my LPD NHL and I like and respect him very much. Although my blood work appears normal my immune system is haywire. Since I finished chemo in Feb I am sick on average every 2 weeks with a…
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wow!
Hey Guy's I may be done my treatment, but dam!!! It's been a rough last couple of day's, trying to gut it out till Wednesday when I get my shot's, I really had a hard time yesterday, could not catch my breath, intense pressure in my chest. Hopefully today will be a better day!! Vinny
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After treatment discomfort
I've had a relatively easy time with NHL, (compared to the experiences of many on this forum). I was diagnosed with NHL, 1 node on rt side of my neck diffuse lg B cell stage 1, had 3 treatments of RCHOP & 20 rads, my last PET scan was clean & I'm very, very grateful. Now that I'm about 6 weeks out from the radiation, my…
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Kaye...Thinking of you
Hi Kaye, Been thinking of you since you posted yesterday. I hope today is going a little bit better for you. Please remember if you need someone to talk with at "anytime" I am more than happy to give you my phone number..all you have to do is ask. In my prayers daily. Love...Sue Tom...how did your 3rd round go on Thursday?…
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To All
Just a quick note to wish everyone well. I haven't had time lately to post to everyone but do keep up with all of you because I care and understand it all. Please hang in there and make wise decisions for yourselves. Good luck and God bless each of you. Your struggles will pay off in the end but I know it's not easy. When…
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Traveling with all of you
Hi All, Still feel nervous about the upcoming trip. We leave on Sat morn 10/2 San Francisco to Tampa. We will be there a week then spend the weekend in Key West. We have a hotel that we are trying to sell. Anyone want to buy a hotel,restaurant, caberet on the main street in key West... We need to check that all is going…
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Chronic cough and neuropathy and flu shots.
Hi Y'All, Just wanted to ask about a couple of symptoms. I had my 3rd infusion last Thursday. R-CHOP. Went well, only 6 hours. But I have developed a chronic chest cough that seems to get really rugged at times. Any one else have this problem? Also, a known issue is the neuropathy. Hitting really hard this time. Both feet…
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back from Onc.
Well it was what I thought, my HGB count is at 9.4, below 10 which is Anemic, my RBCs are at 3.24, she said giving me a transfusion with just coming off Chemo and the stem cell issue would not be a good idea. My WBCs are at 2.4. The did a oxygen test which was normal, she did find out my Vitamin D counts are way to low.…
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Nightsweats but not drenching
I still do have some nightsweats that are irritating and uncomfortable. Every night like clockwork I go read in bed and am fine. Then when I am ready to go to sleep, I get comfortable and lay my head down flat. Within about 2 minutes my head is steaming the pillow and I have to lose the covers completely for about 5 min. I…
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I think its returned and he wont do a scan!
Agressive-Diffuse large B cell Mediastinal NHL Age 32 Female Completed 8 cycles RCHOP and 15 Radiotherapys in January 2010 Hi all, im experiencing similar symptoms, but not as bad, to when i was 1st diagnosed. I told my oncologist when i seen him in July and he said "unfortunately i will experience discomfort and problems…
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Puzzled
I received my order for my cat scan to be done on Dec 1st. But I was at the office three weeks ago and did a port flush. They took a lot of blood. Now on my cat scan order there is an added test which is called bun creatinine. I did look it all up it has to do with my kidney's. I have a feeling they found something on my…
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Ok Guys, have to admit
I am getting really worried. You all know I have a colonoscopy coming up, and the fear is starting to ramp up. I'm taking stool softners for the pain, and it's helping with that. BUT...the shape is ALL WRONG which is a warning sign of colon cancer and blockages. Crap. I hate worrying and at times I do pretty good, then…
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Bad timing or what???
Hi guys, I received a letter in the mail today that said as of Sept 27th my cancer doctor will no longer be at my clinic. They are sorry for the inconvienence, and regret the emmotional distress this may cause,blah, blah,blah. What the heck??? Hubby never liked this doctor from day one and liked her even less after my BMB…
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No MMM!! More bumps along the road
Hi, Friends, I have been thinking that I am faced with the fact that I continue to have low WBCs and my doc told me no MMM - do not go to malls, metro, and movies or crowded areas or dirty areas!! Geez, I find myself kinda isolated at home. I also am faced with a dirty house. My hands hurt too much from neuropathy and am…
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Travel fears
Hi All, Just wanted to ask any of you about travel. I booked our flights to Florida, and now I am getting worried. I've been trying to save what little energy I have. The though of flying cross country with all my fatigue concerns me. But, I didn't have a lot of choice. Now seemed the best time to visit mom in law. We will…
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Good News
Hi Y'All, Vinny, good to hear that you got through your last one. Of course I know there are still a lot of issues, but I hope you are enjoying the evening and not worrying about things you can't control. Still praying your way. Sue, even with your head hurting, you got through number 2. Congratulations. We had good news…
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Done!!!!!
Hi guy's thanks for all the responses, My blood work is such a problem, especially the RBC, my Onc wanted to send me to the hospital for a transfusion, but the more we discussed it, we decide against it, on the fact that if I have do stem cell, it's not a good idea. I may do the Procrit shot, the more I talked about it…
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Are you scared
Hi All, Hope your week is starting off well. I am having a really hard time with the fatigue. Today, going up the stairs was close to impossible. I was so short of breath. I had to stop many times. It hurt to breathe. I know that some of you have trouble with anemia and or major fatigue. Do you get scared by this. I keep…
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Longevity
Hi How long can you live with slow growin non hodgkin's lymphoma? Must you die from it? I try not to take into account the statistics but does anyone know? Richard
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Tuesday morning warriors
Hi Sue and anyone else going for treatment today, I just want you to know that I am sending positive energy your way. You will be in my thoughts and prayers. before you know it, you will be on your way back home. Stay strong. Peace and healing to you.. Lisha
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Neulasta (pegfilgrastim)
I completed 3 cycles of RCHOP - at the finish of the first tx I was given an injection of 6 mg of Neulasta as a preventative to nertropenia. My side effects were horrible - lots of bone pain, joint and body aches, head ache, jaw pain, gum pain, teeth pain ear aches etc. The next two cycles we cut the dose to 3 mg to see if…
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Vinny
How are things going for you today? John
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Who here has gone through the stem cell transplant?
So I went to my first rescan 3 months after remission and had already relapsed. I did a treatment of ICE, but it didn't work and I had some crazy reactions to it. Now I'm doing ESHAP and holy cow. I'm curious who has gone through the stem cell transplant. What's it like? I'm terrified it get's even worse than ESHAP =,( I…
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8th Treatment
On way in about a hour to my last Chemo session...... where did the time go!!!!! They won't do another P.E.T. Scan for a few more weeks, that's when the real fun begins! LOL Talk to all soon God Bless Vinny
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Today
Today is going to be a good day for all of us. Treatments today are going to fly by. I go see my surgeon today and hopefully get good news, we'll see. Hang in there guys, we're gonna make it (throwing a hat in the air) LOL Take care everyone Beth
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Well
The appointment went well today I suppose. I do have to have a colonoscopy :( which is what I was afraid of. I SO did NOT enjoy the first one I had a few years ago. He doesn't believe it's anything serious. He thinks it's just irritable bowel. I told him I've had irritable bowel for years and never had this type of pain,…