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Hello to all!
Hope someone remembers me? I don't have the time right now to go through all of the posts so allow me to just say you are all in my prayers. Feeling anxious right now...I go for a recheck scan tomorrow(I know many of you can relate). I will know the results by tomorrow afternoon and hope like crazy the remission is…
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need input
i am feeling feeling scared about the allo transplant i could have it and die from host versus graft desiese or keep having chemo and mabey have more time i don't know which way to go i would be appreciated blessings denise
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So much better!
The miracle of good expensive drugs. I now have another anti nausea med along with the new one from a few hours ago. So far so good. NO nausea, and just minor discomfort. I talked with the onc tonight. They are both trying their best to get me in on Tuesday. She didn't want to promise after what happened on Monday, but I…
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Searching for answers
Hello Everyone, I hope no one minds that I am only a "possible" case. I have received some strength from you already and it helps me to keep pushing my doc for an answer. First my symptoms (Dec 2011): pain in back around left shoulder blade that hit me like a blow along with nausea. The back pain dulled to an ache within…
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Evening update
Hi All Just thought I would update everyone. Looks like Tuesday will be the big day. It's going to be a long time from now till then.. Still dealing with the increasing pain and nausea. But even that is hopefully going to have a little improvement. The triage nurse upped the pain meds to fast acting liquid morphine and a…
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Happy to sign up with Cancer Survivors Network Hodgkins
I was diagnosed with Hodgkins Lymphoma in March 2011. Just signed up today. I noticed just looking at what some people posted. It has made me break out my paperwork and get a little more involved in my disease. Although I am not a survivor yet I have just achieved complete remission (CR). Thank God. I still have to get a…
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Better evening
Hi All No new update as far as the surgery day and time. Still hoping that I'll hear it's on for Thursday. Onc only does surgery on Tue and Thur. Today was quiet and very uneventful. Thank goodness. The only negative is the pain. I think the last hour or so is the first time since I woke up that I don't have really yucky…
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Quick update and prayers needed
Hi All It's been awhile since I've given any sort of update. I'll make this brief, since I don't have all the info yet. I had an emergency Doc visit yesterday afternoon (monday). I am getting a ct scan in about 8 hours. I have a tumor that has become so large in a short amount of time, that it is visible. Seems like it was…
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Surgery CANCELLED !!!
Yes, It's really true. I cannot believe it. I have pulled myself together after a major major meltdown and a long nap. I cried myself to sleep. The Hospital and the cancer center each have operating rooms. The cancer center rooms are used by cancer patients and kids from the childrens hospital next door. This is what I was…
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Scuttlebug11...Denise..how are you doing???
Hi Denise, Hope all is well, but would feel better if you popped in and told us how things are going for you. :) You are in my daily thoughts and prayers sweetie. Much love...Sue (FNHL-2-3a-6/10)
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From the mouth of babes
Hi All Still hanging in. Having lots of moments of okay and then tears. I wanted to share something my youngest granddaughter, Fynn said to me last evening. We were walking to my car to get some left over sparklers to light before I went back home, and out of the blue, she asks me if I am scared to have surgery. This is…
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recently diagnosed with NLPHL and scared out of my mind
This is a first for me. I was recently diagnosed with Nodular lympacyte predominent hodkins lymphoma and i am scared out of my mind. After weeks of tests and biopsy a treatment has been planned. I will recieve 6 rounds of r-chop...... i have no clue what to expect. what side effects are common, how long do i have before i…
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Welcome Whitney (whitneytheartist)
I'm posting this as a response/copy to Whitney (the artist) who made her first post in response to the article I shared with everyone. I thought it would be better to open a new thread to welcome her. Paste: Hi Jim, Thank you so much for posting that wonderful article. Wow! I was diagnosed three weeks ago with Large B Cell…
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Who is a patient at City of Hope?
I currently have Hodgkins Lymphoma. Was on a clinical study but had an infiltration in my lungs so it's stopped for now but hope to get cleared to go back on. You are the first I see in a while that just has HL. EVERYONE here has NHL. I am glad u are in CR. HOPE TO BE THERE SOON been battling since 2009
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Surgery Tomorrow
Hi All I just received a call from the nurse. She said that I am wait listed in for surgery tomorrow. They will call later with the actual time. Okay, I am now Terrified! Oh myGod, this is really going to happen. I want to run away, far away. I am so scared. I don't know if I can do this. I'll post again in a little while.…
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Working during RCHOP?
My husband was diagnosed with FNHL 5 years ago, went through chemo with Rituxan and Velcade, and achieved remission 6 months later. Well, we recently noticed a large mass on his jawline and ultrasounds and PET scans (SUV of 12+) initially confirm presence of lymphoma. The biopsy is scheduled for 2 week from now (we're…
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I feel it
Hi All I want you to all know that I really do feel the love and support coming from each of you. Reading your words to me, gives me so much hope and courage. I feel surrounded by your strength. I can do this. For me, fear is a very strong emotion. My outer self can appear to be strong but the inner self has a lot of fear.…
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CT scan results - what fresh hell is this??
I guess I've been in denial about my medical status for a month or so. After 8 sessions of Rituxan, my platelets were up to 160 and I was feeling well. My hematologist had me go in for a followup CT scan "just to see", and I did that last week. The results are pretty scary. The hematologist knows that I want the actual…
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Reality
Hi All Well, I have had my first reality check and meltdown. I thought I was doing so good at keeping my mind focused on details and everything else. The quiet of the night is so hard. the brain starts whirling and it hits. Today we tell our daughters. This is going to be hard. I hate to bring them any type of fear or…
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Home with answers and a plan
Hi All Happy Friday the 13th Well I am home. My little appointment turned into an all day many departments type of visit. First, I LOVE my new Onc and her attending Onc. They are both amazing and so far are the perfect fit for me. This is a first, to meet two new Docs and right away think they are the best. This has never…
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Chemo Today
Hi Everyone, I have my third infusion today and tomorrow. Bendamustine. Don't know if my doc is adding Ofatumumab or not. Won't know until I see her one hour before the infusion. I am not looking forward to that- can cause weird infusion reactions. Anybody had it yet? But hopefully it will cause a longer Remission- which…
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No DX, just looking for answers....please
I had papillary thyroid cancer follicular variant in 2010, thyroidectomy in 10/10, RAI in 11/10. I've alway had a parotid gland on the left side that has been screwy since the RAI, but it's in my cheek. Ever since my survey 19 months ago, I'm still getting bouts of hoarseness, breaking out in hives, (I carry benedryl spray…
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Auto Stem Cell Transplant Tomorrow Morning
Tomorrow morning in go in for my Auto stem cell transplant to treat my B Cell Non Hodgkins Lymphoma. Any words of advice or experience wit this procedure would be greatly appreciated.
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Survived 2 cancers , possibly have another one , im freaking out !!!!
Hello to everyone , my name is Sebastian , i just turned 30 on Thursday September 22 , as i child i was diagnosed with leukemia ( ALL ) ive been in remission since my bone marrow transplant in 1997 , in 1999 i had a suspicion cell removed from my body , the doctors told me it looked like a super early detected cell that…
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Oh Crap!
Hi all my dear sweet friends, I felt that the title of my post is very appropriate. I have tried to log on, but of course this site was full of issues. Seems to be my sort of luck lately. Anyway, I'll try to fill you in before the site goes crazy again.. I had a long chat with the Doc this morning. He was able to answer…
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On the fast track
Hi All Just a brief update. I talked to the cancer center and was told that the first appointment was on the 27th. I received a phone a little while ago, and they have fast tracked me in to see the new onc tomorrow morning. Wow, that is really moving along. What a week! Monday saw my reg Doc, Tuesday had the scan,…
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Problem with website
Anyone else have/had this problem: 1. Getting a "FALSE SETT" message at top of page 2. I worked around 1 above but site is not displaying images. Showing with red background: The directory files/images does not exist." I couldn't login to the site my usual way from a bookmark but I found another link on the web that let me…
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Limited news
Hi All Well I finally heard from the Doc. It was a very brief call with limited info. he said that he will have all the details in the morning. Sigh.. This is what I do know, There is a tumor 17cm and a few smaller than that. That's it. This is what he said. He did not have time to talk to the radiologist today and only…
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Just diagnosed with NLPHL
Hi everyone, after years of something being wrong with me(I'm 45) and told its all in my head they finally figured out I have this disease. Had my pet scan yesterday the bone marrow biopsy is today second opinion is next week and treatment after that. Did anyone have sleeping trouble after diagnosis? I have barely slept in…
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Treatment plan
After meeting with my normal onc, we're going to do Rituxan and see if I respond to it. He talked about doing once a week for 4 weeks and send me for a sonogram or pet scan in a couple weeks to see if it's responding to it. If not, they'll add bendamustine for 6 months. I think that would be once a month, with rituxan…