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Info on a new clinical trial for lymphoma

Chris17's picture
Chris17
Posts: 114
Joined: Oct 2010

Was reading an article on a clinical trial was very intersting and very hopeful sounding you may have to copy and paste in your browser

 

http://fhcrc.org/en/news/releases/2013/02/high-dose-vorinostat-effective-treating-relapsed-lymphomas.html   

 

                      Chris

allmost60's picture
allmost60
Posts: 3155
Joined: Jul 2010

Hi Chris,

 Very interesting article,thank you for sharing. Seattle is in my neck of the woods, so it's nice to read advances are being made close to home. I'm confident in the future we will see many more experimental drugs being developed to help manage Lymphoma cancer. Hope you are getting around easier after the huge snowfall you were hit with.  Take care...Love, Sue (FNHL-2-3A-6/10)

illead's picture
illead
Posts: 489
Joined: Aug 2012

Thank you so much for sharing.  We all live in dread of the day it comes back so anything we hear on the horizen is very encouraging.  We know they are researching hard but it's mind settling to see it on paper.  We will share this with Bill's onc next week.  Thank you again.  Bill and Becky

illead's picture
illead
Posts: 489
Joined: Aug 2012

I just flagged your post thinking it meant it would save it to my page but it said it was being sent "to the administrator", whatever that means.  I didn't realize flagging was bad.  If they send the troops just tell them to come and get me..............so sorry.  Becky

MandaJarvis11's picture
MandaJarvis11
Posts: 37
Joined: Feb 2013

 

So I have been having all these symptoms all since October. Tomorrow I meet with an onocologist to find out what the next step would be. I am 25 I am too young to have cancer right? It's probably just swollen glands right? :(
 
- Achy, body was sore and tired even if I had rest. That came about late October/early November.
 
- Lasted for about a month before I finally called to see my doctor. I never had a cough, sore throat or anything. 
 
-I had a fever of 101.1 for 3 days. At first she thought I had mono but the blood work said no. So she gave me a zpack to knock the cold out. 
 
-I told her my neck hurt then and that's when the lump had been noticed. But she said there was probably from the flu and the swelling would subside in my lymph nodes. 
 
- I took a week or two but the pain was still there as was the lump. So I went back and she said I had an ear and throat infection? Which made zero sense to me because neither hurt. She did take an ultra sound on my neck that day.
 
- So she prescribed me a ten day medication (amoxicillin) you take twice a day. She said that will definitely nip it in the bud and my neck will be fine.
 
- After I took that medicine it killed all my good bacteria and had horrible stomach pains. I ended up at the ER, even after Dr. Akila prescribed me medicine for a yeast infection I believe I had but never did.  She just assumed it from the medicine she gave me prior. The dr at the ER gave me a pill to calm my intestines and told me to eat Greek yogurt and I would feel better. (Which worked)
 
- So now everything was fine but my neck is still in terrible pain and sore. I went in for my yearly check up and she gave me another ultra sound on my neck and then sent me to an onociliologist on valentines day.
 
The past two or three weeks, whenever I drink a beer, glass of wine I feel like the pain worsens. I have been very itchy all over. Also I've had a low grade fever off and on. And this past week I've been having a hard time forming sentences and remembering things. I couldn't even remember the birthday song. Also have had a hard time breathing. It's ongoing... And sometimes when I eat my heart races really fast and I feel as if I'm about to have a panic attack? 
MandaJarvis11's picture
MandaJarvis11
Posts: 37
Joined: Feb 2013

 

So I have been having all these symptoms all since October. Tomorrow I meet with an onocologist to find out what the next step would be. I am 25 I am too young to have cancer right? It's probably just swollen glands right? :(
 
- Achy, body was sore and tired even if I had rest. That came about late October/early November.
 
- Lasted for about a month before I finally called to see my doctor. I never had a cough, sore throat or anything. 
 
-I had a fever of 101.1 for 3 days. At first she thought I had mono but the blood work said no. So she gave me a zpack to knock the cold out. 
 
-I told her my neck hurt then and that's when the lump had been noticed. But she said there was probably from the flu and the swelling would subside in my lymph nodes. 
 
- I took a week or two but the pain was still there as was the lump. So I went back and she said I had an ear and throat infection? Which made zero sense to me because neither hurt. She did take an ultra sound on my neck that day.
 
- So she prescribed me a ten day medication (amoxicillin) you take twice a day. She said that will definitely nip it in the bud and my neck will be fine.
 
- After I took that medicine it killed all my good bacteria and had horrible stomach pains. I ended up at the ER, even after Dr. Akila prescribed me medicine for a yeast infection I believe I had but never did.  She just assumed it from the medicine she gave me prior. The dr at the ER gave me a pill to calm my intestines and told me to eat Greek yogurt and I would feel better. (Which worked)
 
- So now everything was fine but my neck is still in terrible pain and sore. I went in for my yearly check up and she gave me another ultra sound on my neck and then sent me to an onociliologist on valentines day.
 
The past two or three weeks, whenever I drink a beer, glass of wine I feel like the pain worsens. I have been very itchy all over. Also I've had a low grade fever off and on. And this past week I've been having a hard time forming sentences and remembering things. I couldn't even remember the birthday song. Also have had a hard time breathing. It's ongoing... And sometimes when I eat my heart races really fast and I feel as if I'm about to have a panic attack? 
MandaJarvis11's picture
MandaJarvis11
Posts: 37
Joined: Feb 2013

 

So I have been having all these symptoms all since October. Tomorrow I meet with an onocologist to find out what the next step would be. I am 25 I am too young to have cancer right? It's probably just swollen glands right? :(
 
- Achy, body was sore and tired even if I had rest. That came about late October/early November.
 
- Lasted for about a month before I finally called to see my doctor. I never had a cough, sore throat or anything. 
 
-I had a fever of 101.1 for 3 days. At first she thought I had mono but the blood work said no. So she gave me a zpack to knock the cold out. 
 
-I told her my neck hurt then and that's when the lump had been noticed. But she said there was probably from the flu and the swelling would subside in my lymph nodes. 
 
- I took a week or two but the pain was still there as was the lump. So I went back and she said I had an ear and throat infection? Which made zero sense to me because neither hurt. She did take an ultra sound on my neck that day.
 
- So she prescribed me a ten day medication (amoxicillin) you take twice a day. She said that will definitely nip it in the bud and my neck will be fine.
 
- After I took that medicine it killed all my good bacteria and had horrible stomach pains. I ended up at the ER, even after Dr. Akila prescribed me medicine for a yeast infection I believe I had but never did.  She just assumed it from the medicine she gave me prior. The dr at the ER gave me a pill to calm my intestines and told me to eat Greek yogurt and I would feel better. (Which worked)
 
- So now everything was fine but my neck is still in terrible pain and sore. I went in for my yearly check up and she gave me another ultra sound on my neck and then sent me to an onociliologist on valentines day.
 
The past two or three weeks, whenever I drink a beer, glass of wine I feel like the pain worsens. I have been very itchy all over. Also I've had a low grade fever off and on. And this past week I've been having a hard time forming sentences and remembering things. I couldn't even remember the birthday song. Also have had a hard time breathing. It's ongoing... And sometimes when I eat my heart races really fast and I feel as if I'm about to have a panic attack? 
MandaJarvis11's picture
MandaJarvis11
Posts: 37
Joined: Feb 2013

Sorry for posting so mant times :(

JoanieP's picture
JoanieP
Posts: 573
Joined: Mar 2010

Have you had night sweats.? itching is a sign but that is usually dry skin.  I do believe it is not Lymphoma unless you are having nights sweats.  God bless and keep us posted 

MandaJarvis11's picture
MandaJarvis11
Posts: 37
Joined: Feb 2013

I am having a hard time sleeping because I get really hot at night, but I don't sweat profusely. I am terribly itchy :(

illead's picture
illead
Posts: 489
Joined: Aug 2012

Hi Manda,

  First pf all, try to relax.  I know it's easier said than done because the C word is very scary.  So you will see the oncologist tomorrow right?  He or she will know what to look for and the right kind of tests to take.  It could be numerous things plus the fact that you are very upset and worried could cause your thinking problems etc.   My husband's lymphona showed up in his bone marrow and he never had any gland swelling so I don't really know about those symptoms.  He had night sweats and rigors (chills).  He also had severe hives all over his body, the jury seems to be out on that as to being a symptom.  I'm not sure if you still have the lump.  I was wondering if you ever had the mumps and that is what you had, just a mild case  At any rate, try to get some rest and see the doctor tomorrow, we can only play the guessing game but they are the experts.  If it is lymphoma, most are very manageable and there is research and new things being developed all the time.  We are always here to listen and to support, so don't hesitate to write and if you want, please let us know what the doc says.  Even if it is not serious we still care and love that kind of news. Our best to you, Bill and Becky 

MandaJarvis11's picture
MandaJarvis11
Posts: 37
Joined: Feb 2013

Thanks so much! And yes I go tomorrow at 1:30. Lump is still there, and no I've never had the mumps. I'm nervous, so is my boyfriend. Is it true that because its painful its no cancerous?

illead's picture
illead
Posts: 489
Joined: Aug 2012

I don't know about that, like I said Bill didn't have any lymph problems.  I was probably off base about the mumps thing, I was thinking your lump was gone.  Still though, try not to overthink this.  You'll know more tomorrow after seeing the doc.  Be sure to tell him all your concerns and fears.  They know so much more now about all these things than they did even a few years ago.  You will be in good hands,  I'll be thinking about you.  We all hope for the best. Becky

jimwins's picture
jimwins
Posts: 1984
Joined: Aug 2011

Hi Manda and welcome to the site.  I wish you the best of luck today!  We all know how tough just the thought of having canccer can be.  Please know you are not alone and you have friends here.  They will examine you today and perhaps want to do a biopsy and probably some other tests as well.  All of this causes a lot of anxiety and you may want to ask your doctor about something for anixiety - believe me, it helps take the edge off.

Lymhoma is very treatable and even curable so know there is hope should you be diagnosed with it.  I have been in remission now for over a year and there are many many success stories here. You are in our thoughts and sending you positive energy and strength.  Please keep us updated and feel free to come here with any questions or just to vent, etc.  That's what we are here for - to support each other.

Hugs,

Jim

MandaJarvis11's picture
MandaJarvis11
Posts: 37
Joined: Feb 2013

I went to the doctor he said my lump was 2.2cm and I am getting a cat scan tomorrow and have a follow up Monday! I'm really nervous, he said anything bigger than 2cm it's something to worry about.

illead's picture
illead
Posts: 489
Joined: Aug 2012

Okay, it's not the best news but it's not the worst.  It could still be something else.  If not, you are young and it has probably been caught early and like we have been saying, many lymphomas and other cancers are very treatable.  We are so sorry you have the weekend to wait, it's going to be a long one.  Did you take Jim's advice and tell the doctor about your anxiety?  If not, you should call tomorrow and see if he will prescribe something for you.  We are here Manda anytime you need to talk.  Stay close to your loved ones and let them comfort you.  Thank you for keeping us informed and we are hoping for good news on Monday, we'll be thinking about you tomorrow and all weekend, we all really care. 

lianadw's picture
lianadw
Posts: 72
Joined: Jan 2013

HI Manda,

I know how scary this must be, and waiting to find out just what it is you're dealing with can be the hardest part. I hope it's not cancer, but if it is, Lymphoma is very treatable and curable. Your young and so you body should be able to fight this and win it. I was diagnosed last Oct. with mediastinal large b-cell lymphoma. I had a 15cm tumor in my chest. I'm still fighting it, it's 7cm now, and still active, but will kick it's butt and be well soon. My mother in law had a swollen lymph node in her groin wich was lymphoma. Scan showed no other cancer anywhere. She was treated with radiation, and has been clear of cancer since, that was nearly 10 years ago. I don't know what size hers was, but it was pretty small like yours.

Hang in there, and do what you can to distract yourself from the worry. Until you know, there's not much else you can do.

Sending healling thoughts your way,

Liana

illead's picture
illead
Posts: 489
Joined: Aug 2012

Thanks for your input to Manda Liana, she needs to hear from a younger one.   I have been reading about your journey and want you to know that we wish you the very best also.  My husband has Mantle Cell Lymphoma and is in remission a year.  He was going to have the SCT but emailed some doctors in Germany and one in WI and they suggested not to since he is in remission.  Know your case is different of course and know it wasn't an easy but good decision.  Our best to you,  Bill and Becky

lianadw's picture
lianadw
Posts: 72
Joined: Jan 2013

So glad to hear Bill is in remission, I plan on joining those ranks of remission soon! And thank you for your kind words and thoughts. It helps! Liana

MandaJarvis11's picture
MandaJarvis11
Posts: 37
Joined: Feb 2013

Smile

I appreciate all the happy thoughts its helping me get through this. No one in my family wants to except the changes and its hard to handle this. My boyfriend is my rock though thankfully. I'll let you all know how my ct scan goes tomorrow! Again, thanks everyone

lianadw's picture
lianadw
Posts: 72
Joined: Jan 2013

Hope you get speedy and happy results! Liana

MandaJarvis11's picture
MandaJarvis11
Posts: 37
Joined: Feb 2013

I just wish I could find out everything today rather than wait all weekend. But I picked up more serving shifts to keep busy! My boyfriend is really sworn out from me I think. I feel bad but i live with him and its hard to put on a happy face when I'm in discomfort and worrying. You guys are very helpful though and appreciate everything!

dusterbin's picture
dusterbin
Posts: 1
Joined: Feb 2013

 

Hi, new to the site. I was diagnosed yesterday with Chronic Lymphatic Leukemia. I'm still processing this. It's been a long 7 month journey with many doctors to find out what was wrong with me. I cry for the time lost. However, have to move on now. Oncologist appointment is on the 26th. Can anyone just share what that appointment might entail? I would like to be prepared as much as I can. I'm researching and looking. I appreciate your encouragement that is one cancer that can be treated and cured.

 

Thanks so much for all your encouragement and great progress.

Manda...hang in there girl. Praying for "good results" and inner peace.

Gwen

lianadw's picture
lianadw
Posts: 72
Joined: Jan 2013

Hi Gwen,

Welcome to this site! I've found this to be a great resource with a wealth of support and knowledge from all the members here. I'm sorry to hear of your diagnosis, but I know it must be a relief also to know what's going on after 7 months of testing. My first visit with my oncologist was mostly him giving me a lot of info about the different types of cancers and how they get treated and how the lymphoma I have would be treated. He gave me an outline of the coming months and also additional tests he wanted. I can't remember now what questions I came with, other than can I go back to work, which he recommended against. He wanted me to focus on my health. I feel I could have worked on a very part time basis, my energy has been mostly good, but I've followed his advise, and my energy is probably good in part for not having to deal with the stressors of work. And now my treatment is intensifying, so I really can't be working.

Keep us posted on what treatment you will receive and how you fisrt visit goes.

Warmly,

Liana

po18guy
Posts: 237
Joined: Nov 2011

Gwen, the name tells a lot. 'Chronic" means that it is a disease that may not be curable, but one that can be controlled, like many other illnesses. Since it is a blood-borne cancer, it is very treatable. Here is a link to an information sheet regarding CLL: http://www.lymphoma.org/atf/cf/{0363cdd6-51b5-427b-be48-e6af871acec9}/CLL2010.PDF

illead's picture
illead
Posts: 489
Joined: Aug 2012

Hi Gwen,

     I agree with Liana.  Your oncologist will be telling you about what your treatments will be.  We have all been there so we understand.  Cancer always happened to others until it struck us.  It's hard to wrap your head around, but we become experts fast.  Bill has Mantle Cell lymphoma and is now in remission a year.  We were very fortunate, he went from near death to optimum feeling in about 5 months.  We are able to go on with life and put the cancer on the back burner (way back) for now.  We know it is an ominous feeling but you will do fine.  There is so much headway and more on the horizen with lymphoma and leukemia so there is much to be optimistic about..Hope you have a good cancer center,  oncology nurses are terrific, you should be in very good hands.  Someone is always here to listen, so share your thoughts whenever you want.  Let us know how things are going if you want.  Our thoughts, Bill and Becky

Manda,

     Thinking of you today, good thing you are busy this weekend.

po18guy
Posts: 237
Joined: Nov 2011

I had a T-Cell Lymphoma that was widespread, and so could not be irradiated. It was highly resistant to chemotherapy, defeating all eight drugs that were used against it. It relaped immediately after chemo, which lowered my prognosis from poor to very poor. My only choice was between no treatment at all, or one last massive infusion and palliateive care > hospice. Providentially, at that precise moment, a clinical trial of a new HDAC Inhibitor opened up. HDAC Inhibitors are not chemotherapy, but are considered a biological drug. Thus, their toxicity is lower. I entered the trial of Romidepsin (Istodax). It put my lymphoma back in full response. Once the trial ended, I remained in the long-term study of the drug, where I am today. At the end of this month, I will have been receiving the HDAC Inhibitor Istodax for four years. It is the only thing that saved my life after the immediate relapse, and is the only reason that I am here today, as there is no match for a stem cell transplant. It provides great hope for many who have relapsed T-Cell Lymphomas - known for a poor prognosis and the  frequency of relapse.  

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