About Lymphoma | Advocacy | Art | CAM | Clinical trials | Doctors - Experts - Centers | Guidelines at Diagnosis | News
Risk Factors | Side Effects | Statistics | Support | Symptoms | Tests | Treatments | Types of Lymphoma

Search Site         Guidelines at Diagnosis | About Clinical Trials            How to Help!

Patients Against Lymphoma

 

Lymphomation.org > Visitor Comments

Last update: 01/17/2015

     We  appreciate the many encouraging comments made
          by visitors who have signed our guest book.  

          ~ Karl Schwartz

Please click here to email 
your comments or suggestions

I just wanted to add that this site and the main one is the very best source of information out there. There were few days when I did not suggest to even my doctors at Baylor to check out all of the great stuff here. If you know anyone diagnosed just send them here asap. All you will read is accurate, clear and direct to the point.

CTX62 (posted to Pal Forum)

==

Thank you for keeping this important topic in front of the group. I would encourage all members to contact their elected representatives through the links PAL has provided to build support for passage of federal legislation. Oncology drugs in development are increasingly move to oral form. Over half the states have passed their own oral chemo parity bills, but federal coverage is still needed. We've have more than 70 co-sponsors in the House of Representatives and Senators Franken (D-MN) and Kirk (R-IL) introduced a companion bill in the Senate late last year. Additional bi-partisan sponsorship is critical, particularly in the Senate. The Patient Equal Access Coalition (PEAC) will continue to push this forward. We appreciate your support.

~ JT

==

Thank you so much for your excellent work. The information you provide has helped me through two rounds of chemotherapy; and a clinical trial which included radioactive iodine and an autologous stem cell transplant. Gratefully, I have been in apparent complete remission for 8 1/2 years! I still check your posts. It is the most helpful of all the sites and groups I have seen. The science is sound, the support is sincere. 

Thank you!  ~ IV

==

Thank you so much for all of your hard work and services for those of us around the world with lymphoma. Your organization and the lymphoma forums have been such a comfort to me as well as an outstanding educational resource, I wish I could donate heaps, I know this is only a small amount but I will donate little amounts like this when I can. Much love - Jess

==

Thanks for the prompt reply and the guidance. You have no idea how thankful I am to have this NHL support group and your dedicated help. I'd be lost (and very anxious) without it and you!

~ Frank, NHL-follic (10/2012)

==

Thank you so much for taking the time to respond. I will definitely consider having biopsies done soon.  So good to know groups like your exist that help people like myself that instinctively know something is seriously wrong but are thoroughly confused about which direction to take. Your guidance has been most helpful.

~ FR, Australia

==

Dear Mr. Schwartz,

Lymphomation is fantastic. Thank you for your service and for providing this wonderful resource. I work for the Winship Cancer Institute and am so proud to see that Winship was listed on your Cancer Centers page: http://www.lymphomation.org/cancer-centers-gi.htm

Many thanks,

Susannah 

==

I can't tell you how much I appreciated your answer to my question about the possible cause of my particular case. It was very freeing. As to your website: it is an excellent source of information...the best I have found in this three month walk with NHL. Thank you!

SN, Arizona

==

A fantastic site that really simplifies lymphoma. I have recently been diagnosed with a T-cell lymphoma and have been dumbfounded to say the least, firstly by the diagnosis, and secondly by the complex technical terms used by my Haematologist.
Having had an array of tests ranging from bone and bone marrow biopsies to DNA tests etc, I now basically understand the need for all that has been done so far.
Your site has cleared much of the jargon used by highly technical Dr’s. and provided clear facts that are well presented and in a sequential order. It will definitely take me time to go through and digest all information you have provided.

Well done to your team and thank you.

S, Port Elizabeth South Africa

==

As usual, thank you for your expertise! This study was exactly what I was looking for to be comfortable with SCT [stem cell transplant] if relapse occurs [for DLBCL]. I have added it to my files! 

All the Best to You, Mary

==

As usual, your advice is well founded and priceless. May you continue to supply us all, with your extensive knowledge of fNHL and the latest developments. I know you have heard it repeatedly....your dedication to this site provides us with an endless and ever evolving window to the future and all the most current news.

Thank-you and your staff, for your unselfish and exceptional dedication. It is much appreciated!  ~ Roger

==

I have just been told this past Tues that I probably have lymphoma but my doctor is waiting for the lab to send him conclusive info + stage, etc. Your website is like a GOD send in the fact that I will have to wait a week for the information and my mind is asking all kinds of questions with no answers so I have the "what if's"!! Now I can read, know what hospitals to target and try to understand what may be happening to me. Thank you for all of your hard work.

~ M

==

I'm very impressed with the Lymphomation website. You've got a tremendous amount of useful information there. A big issue on the web is separating the good stuff from the junk. Lymphomation is high quality information.

I am newly diagnosed - the path report came back last week as Grade 2 Follicular Lymphoma. If I understand staging, I am at least Stage 3 (nodes above and below the diaphragm demonstrated on CT). I will have my first oncology visit next Friday. I'm assuming that the oncologist will want to begin with laboratory tests and staging. I am 55 years old.

I am a physician, by the way, so I can read and understand much of this literature even though my field is not oncology. (I'm an ophthalmologist.) So I have started working my way through the literature references provided on the Lymphomation page titled Lymphoma/CLL Experts.

What is most confusing at this point is what course to follow initially. I am asymptomatic, and the initial hints from my internist is that the oncologist may favor "watchful waiting." I am pleased that there are drugs that seem to be effective in a high percentage of cases, but it seems that there is no uniform agreement at this point about when to initiate treatment.

~ Ed

==

Thank you so much for your email - it helps very much as both my husband and I have been confused with all the tests that have been requested. We are going ahead with the bone marrow biopsy and will then go ahead with a second opinion upon receipt of the result. Thank you again.

- Jen

==

A FACEBOOK FRIEND WRITES: If this story doesn't touch you what will!!!! I love all of the links you post on here, I find that I share many of them with my friends here on Facebook. Thank you so much for all your hard work on this site! IT TRULY IS AMAZING!!! You offer so much hope to everyone out there! Thank you again! :) 

==

I just wanted to take a minute to thank you for the work you put into
your posts, the data you provide, the fact-checking, etc.  Both my
sister, coming slowly out of w&w, and I find them very helpful.

 - Ellen

==

Indolent lymphoma talk show:  Just finished listening to the discussion. For someone who has recently been diagnosed with Indolent Lymphoma it was really insightful. It just helped to have yet another specialist say that it's ok to wait it out and see what happens. Which is the hardest thing to do especially when you tend to be the anxious type.

I'm so happy I found this site. - Scottishgirl (webmagic)

==

This Month’s Heroes – Patients Against Lymphoma

"This organization is responsible for the website www.lymphomation.org .  The website is a comprehensive source for information and advice for those dealing with lymphoma.  It has information on the disease, treatments, clinical trials, advice on choosing a doctor and many, many other important topics.  The phrase “treasure trove of information” is over used, but it applies to this website.  Karl Schwartz is the co-found and president of Patients Against Lymphoma.  This world wide source of information comes from Karl’s home in Riegelsville in Bucks county."

© Legal Clinic for the Disabled, Inc. 2009 www.legalclinicforthedisabled.org  

==

What's a Drug: Thanks for the article!  I found it easy to follow and informative and definitely a keeper! 

- Karni

== 

Thank you so much for responding so promptly to me. I'm a Genetic Counselor working with people who have a family history of cancer on a daily basis. I like to be able to find a reason for cancer. However, as you know, there is often no explanation for why someone is diagnosed with lymphoma. 

The most frustrating is that although we know so much and are learning so much about NHL, there is also a lot that we don't know. Our oncologist replies to many of my questions with 'I don't know....' or 'we don't have the studies to answer that questions'. I think most of this has to do with what you described below-my husband's cancer is a type that is quite rare. 

It's reassuring to know that R-CHOP is used x8 for transformed follicular lymphoma. And it makes sense that my hubby is getting 8 cycles since he has litle or no side effects from the treatment. 

I will search the site to read the few others who have had this on the nhl-malt listserv. I find it oddly comforting to read the stories of others in a similar situation. 
Thank you again for responding, and thanks for lymphomation.org

sincerely,  S

==

Thank you so much. I went with my husband to the Dr. yesterday to discuss his treatment plan and I asked what questions I could. But the information that you have provided is just wonderful.

Thanks so much. Gay

==

Thanks so much for your fantastic website.  It’s already answered many questions that I have.  Perhaps you have answered these two questions on the site, but I can’t seem to find the answers. ... 

VJ

==

Thank you so much for your expeditious reply.  I really appreciate it, and will research on my own and consult with my doctor your comments.  Thanks again.  It is a comfort knowing people care when this kind of thing strikes someone.

Mark

==

Thanks for your hard work on this site!  I am a recruiter for clinical trials all over the US and Canada.  Its a great reference for studies and what is out there.

 Regards,   Jennifer

==

I am thrilled to know that you have started a blog! As you know, I have been in remission for nearly 5 years but have been a big advocate of lymphoma causes, and so I try to stay abreast of information as it becomes available. Your site is a huge help in that department!

When I was first diagnosed early in 2002, there wasn’t as much on the web as there is now, but most of what I found seemed to make one recommendation or another. Knowing nothing about lymphoma, I remember wondering if the information I was reading applied to me - or if it was even accurate. In the years that have passed, I’ve learned enough, I think, to decipher good information from bad, or at least to know when to question information.

And I’ve noticed something else during all this time: no other source that I’ve seen (and I’ve seen a lot!) provides such accurate, up-to-date information as Lymphomation. More importantly, it is presented without attempting to recommend, which allows each individual to make his or her own decision about how - or even if - it applies. Somehow, you have brilliantly managed to find that delicate balance between providing information and support without attempting to “play doctor.”

Lymphomation is a “safe” site for patients seeking information they can really count on to be accurate - and that’s a priceless gift to us all. I can’t imagine how you find the time to devote to all these efforts, but I certainly CAN imagine how much they mean to patients who need it most.

So Karl, I just wanted to say thanks and to wish you great success as you launch the new blog!
 http://lymphomation.org/wordpress/?m=200708  

Betsy de Parry

==

Thank you for such an informative web site. My Husband is going thru R Chop chemo. The information you have here has been such a help to me, regarding his nutritional needs and other needs. Blessings, ~ Susan

==

I appreciate you sending this link to me. It has put me at ease. I think maybe I am just running with the fact that this may be something more serious than it is due to my fear of that happening. I hope this is simply an infection and this will clear up with the course of antibiotics I am on. This article certainly made me feel better.  ~ Michelle

Thanks for providing such a great site. I was diagnosed with NHL - MALT of
the lungs last week and have found much of the information on your website
very informative and useful!   Thanks, SP, TX

This has been very helpful. Doctors tend give us prescriptions, 
not information.  ~ Rita, IL

Thank you for your reply concerning my wife.  At the next appointment, which will be in the next couple of week I will make sure that I mention the fatigue.  In the meantime I will make sure that I “push” Carol and make sure that we do walking or some other type of exercise to hopefully get her over this hump.  I REALLY appreciate the ability to get this type of support.  It makes me(us) feel that we are not alone.  Thank you does not seem enough but know that it comes from the bottom of our hearts.  

Thank you for your response and concern,  S & C.

Regarding nhl-follic (Support group): " I just joined the group and am overwhelmed at the outpouring from members.  I feel like I've found a most valuable resource.  The very first message that I opened brought tears, it was as though the writer actually knew me and my feelings. 

I'm still working (9+ hour days) - and my husband is not computer literate beyond playing a few games.  So if it takes me a while to respond personally, please be patient.

I can't tell you how much better I feel already, knowing there are people I can reach out to, experiencing what we're now going through, understanding the roller coaster of thoughts and emotions that the diagnosis brought.  Thanks to all,  Linda

I am a 64 year old radiologist diagnosed with mantle cell lymphoma in Nov. '05. I appreciate your site, even w/ my background, negotiating and navigating my care has not been easy. My oncologists are excellent and my care has been top notch but they are not always concerned w/ what's bugging me at the moment. Also, I recommend the book, The Patient from Hell". I read it half way thru' my treatment and found it very helpful and reassuring. Keep up the good work.
~ GB

Thanks for this website, Karl! I just sent a newly-diagnosed patient from my community, who has nodal nhl, to this website. Thank God for you and the other PAL folks! ~ RS

Thank you so so much. I now know what to do. One thing is to get this doctor to pin down what I have exactly. If he doesn't know then I want my slides and scans to go to a pathologist who can read what I have and give me an accurate report. I may even have to change drs if I cannot get an accurate report. It was so confusing to have this dr say one thing, read the report and it says something else. Thank you so so much, I just needed someone to sound off of and I guess I knew I needed a better analysis of what is going on. Take care, and thanks I will write again I am sure. I know more about CML as that is what my husband Al has. He has chronic mylongenous leukemia w/extramedullary blast crisis. Of course he is in remission now. I researched that and I can tell you a lot more about what is going on with him than with me. 

~ Take care, Lynda and Al

My sincere thanks go to you for your ongoing efforts to keep all of us informed. You and others have committed time, energy and love for the betterment of all of us at the forum. With the information you post, our knowledge is increased vastly. And with this knowledge, we are better equipped--intellectually and emotionally--to deal with our oncologist, our disease and ourselves.

Many, many thanks, Linda!

thank you so much for your great explanation [on use of PCR for bcl-2 positive lymphomas]. it now makes sense to me. sometimes i think my thoughts falls in the "cancer conspiracy"
framework in which there is this "cure" for cancer and that "they" the
government, insurance industry etc.. won't provide us with it , or in this
case there are tests etc.. that they know would benefit us but because of
cost etc they won't give it to us . a little paranoid. 
Thank you again for making it make sense 
~ Patty (LymphomaVaccine group)

Your site has been very helpful to me. my brother has been recently diagnosed with b-cell lymphoma, we go to the oncologist tomorrow. he's already had the biopsy, last week. It's a large mass in his chest. This site has been the most informative that I've looked at and I thank you for the information. ~ Lyn

Very good site! I like it! I just wanted to pass on a note to let you know what a great job you have done with this site. Thanks!  ~ Sergej

Just found that I have Lymphoma and I am trying to learn about the disease. 
Thanks for a great site. 
~ E.H. (NC)

Thanks for the reply to my message it has been very interesting
reading the information given on the link you gave me and I have read
it through several times. I have had a second opinion from a Professor at the Christies
hospital in Manchester who confirmed I was a true stage 1a as he took a
look at my scans, which were sent through to him on disc from my
specialist. He again said it was my decision whether to have radiotherapy or not and repeated most of the things my own specialist had told me previously. He did say that several years ago radiotherapy would have been the next step to take but now they are not sure because
the people who did not have it are doing just as well. He would not
tell me which way to go and left it to me. He said some people cannot
cope with not having any treatment and it is all up to the individual.
     Once again thank you for your reply it has helped reading all the
information. ~ Lynn (nhl-follic)

I would like to thank you for having what I feel is the most comprehensive web site on the planet for Lymphoma survivors. It really has made a difference in my life. Thanks!  
~Thrive Everyone!
Chad (Lymphomavaccine Support group)

It's funny, I have been reading the postings here (nhl-MALT support list)  for well over 2 years now and only recently begun to post.  It's like a door has been opened to the home of a family I never new I had.  As many have said, it is very comforting to know you're not alone with this, and there are folks here who can lighten the burden our diagnosis brings, accepting us as we are, without judgment.  So welcome again, Na and keep in touch. 
~ Bill (nhl-MALT)

First, thanks to everyone participating in this list.  I've been "lurking" since soon after my diagnosis in February 2003 and have felt so encouraged and informed by what I've read here. 
 - Patty, nhl-follic

I found this [Notes on Apoptosis and IAPs] very informative and was able to get a layman's grasp on what's happening in tumor formation....why....and more importantly, what can be done to conteract it. 
Thank you ~ Linda (nhl-MALT)

Thank you so much for the information and quick response. I have been having trouble with what I truly believe it "Chemo Brain" to the point even my employer (although they should not ask) has questioned it. I so appreciate your information. My next step will be contacting my Oncologist. Although I have been in remission for 2 yrs (next month) - I do not see the improvement I was hoping for. Memory (and cognitive problems) and fatigue continue to haunt me. 

Again, with many thanks.
Phyllis

Yours is the first site that I could find and download decent diet information. My wife is having her third bout with cancer and is receiving chemo. Her count is low and she is on antibiotics. Thank you for being there. VM

I have been recommending the site to some of the people I have met through work 
~ Frei Deu Berlin 

This web site has help me understand the disease, as well as my symptoms and given me an idea of the treatment options and the factors that go into deciding what course of treatment is prescribed. It is a lot easier for me to read it all here, than to ask the doctor, since I keep having questions outside of my doctors visit and it is impossible to get answers to everything during a visit. Thanks you for taking the effort to set up and manage this great site.  
~ P W England

This is a Godsend and is, in my opinion, the most informative English-speaking website about Lymphoma in the world. Thank you and bless you all

Thank you for your honest response - I'm glad I found you on the
internet - thanks for helping us find answers to life's difficult
questions.  Best wishes to you and your wife and God Bless.  ~ Anonymous

Yours is the first site that I could find and download decent diet information. My wife is having her third bout with cancer and is receiving chemo. Her count is low and she is on antibiotics. Thank you for being there.  ~ VM

I have been recommending the site to some of the people I have met through work - Kolora

I was wondering about your site. Thanx a lot. Awesome content!  
~ Semm

Excellent website - extremely detailed and information filled.
 ~ Cynthia

This web site has help me understand the disease, as well as my symptoms and given me an idea of the treatment options and the factors that go into deciding what course of treatment is prescribed. It is a lot easier for me to read it all here, than to ask the doctor, since I keep having questions outside of my doctors visit and it is impossible to get answers to everything during a visit. Thanks you for taking the effort to set up and manage this great site.
~ Mollie

Just a line to encourage everyone to check out the sites mentioned below, they are really terrific,..... clear, informative, and easy to understand. What a wonderful guide for any
cancer patients to have especially during that initial  Dr/Client relationship, hats off to all who had input in this.  ~ Linda (nhl-MALT)

Treatment Decisions 
Types of treatments and treatment goals: Treatment-types.htm
Questions for Your Doctor about treatments and tests: - Questions.pdf

Great site! well done and informative. Keep up the good work ~ AC NY

That [Lymphoma Simplified] was fabulous, better than anything I've read so far about cancer. In just 3 minutes I know twice as much as I did before I read it. It seems to be written in a manner that suggests the writer is not a doctor (unlike most things I've read so far) and there's no assumption the reader knows anything about cancer and it finally explains in simple language the significance of the words in my pathology report.

I'm not being kind or nice in telling you this I'm being informative and accurate, just so you know.
It'll be criminal if it doesn't end up in a brochure, soon. Now the nice part: keep up the good work!!

~ Sincerely, Andrew (NHL-MALT)

I am so thrilled that you responded! Thank you! This has been a very difficult time for my family and any information is much appreciated. As far as I know, the lymphoma is localized to the orbit, however, my father does see the doctor today and we will know more about other points of interest on his body. Please forward anything that might be of help. 
~ With much appreciation, ~ CA

Met Scott yesterday at onc's office - he's a new fnhl diagnosis that I mentioned to you - He raved about the website and told me his Dad who lives in Maine also went on the website - they are both amazed by the wealth of information. Bravo! Page Irby, VA

Thank you so very much for your swift reply to my questions about a sudden flare up and the rituxin question. It really helped, and I greatly appreciate your insights. Best of luck to you and I look forward to reading your comments on the website. ~ Thanks again, Donna 

What an incredibly helpful site. I have had nhl for 7 years and I'm trying to make some treatment decisions and your site was very informative. Thank you for an incredibly well thought out site.
~ L Ithaca, New York

This is the very best resource for a patient with lymphoma. I have found information here that was unavailable elsewhere. Information is also provided in the most easily accessible format. Thank you so much. I am sending a contribution and hope to be able to continue to help support this site.  ~ Jill

Your site is very impressive. It is thorough and not full of commercials. It is relatively easy to navigate. Thank you. 

Could you thank AM for me for writing up his experience with his clinical 
trial? I am in the exact same trial and having the information from his 
point of view has been tremendously helpful. And, thank you for publishing 
it! You are helping people through you work on the web and through e-mail in ways that are impossible to quantify, but are tremendous! Knowledge helps us make good decisions. It also calms fears. When we can look at something objectively it helps diminish the terror. I thank you from the bottom of my heart. I will receive the radioimmunotherapy on Wednesday of this coming week and be in isolation for about 10 days followed by high dose chemo and the" replanting" of my stem cells. ~ Iva


Thank you so much in replying to my question. It helped me to understand what is going on. I appreciate you taking the time to answer my question. 
Sincerely, Michele 

Thank you so much for your kind and prompt response. This information is very helpful. Continued good luck in your work with Lymphoma advocacy. ~Suzanne

Regarding Patient Perspectives on Toxicity and the Need for Innovation - PDF
Compelling thoughts and presentation - I am sure it will be well
received at ASH. Ann Barker 

Regarding Patient Perspectives on Toxicity and the Need for Innovation - PDF
Your presentation was outstanding. I did read it carefully. It's like a masterpiece. Thank you, Dr R

Regarding Patient Perspectives on Toxicity and the Need for Innovation - PDF
It was great to have you on the agenda for the conference. You provided an important perspective on the topic of drug safety, and certainly helped echo one of Leigh's enduring concerns... to put the patient first! 
~ Bo E. H. Saxberg, MD, PhD

Regarding Patient Perspectives on Toxicity and the Need for Innovation - PDF
Thanks for enlightening us and providing such a compelling presentation, as well as actively engaging in the discussions! Consider yourself part of the expanding legion of those enriched by Leigh Thompson, and who in turn enrich others, as you surely have us. Best wishes. Timothy R. Franson, M.

This is the most informative website on Lymphoma I have seen. I really appreciate all the information you provide. ~ JH Laguna Niguel, CA 

Thank you to the poets who's words inspire and sadden and enliven, but mostly make very real the battle. See full comment in Poetry ~ KB

Thanks for this very helpful breakdown of the meaning of the components of a CBC. - TK

Thank you very much for your reply. You helped to clarify my situation a bit, plus you confirmed my thoughts that I should get an expert 2nd opinion. I've read over much of your website and found it very helpful over the last couple of weeks (since all this started for me), and I reread the sections you suggested in your email plus the MGUS article. That I need to get an expert 2nd opinion, is clear. Thanks again, ~ Don

Thanks for this great website and all the information this site provides...it has been an invaluable source...keep up the good work....~ TE Mt Pleasant, MI

Thank you so very much for your most informative website. 
It is a wonderful site for such an ugly disease. ~ Victoria

Thanks a lot for providing such a great help to me and my family.  Regards, Suresh (India)

Your site has been soooo helpful. I was diagnosed in August '04 and just had my 7th CHOP+ Rituxan. Scans at 1/2 way point were very good so i am hopeful that 8 treatments will do it. Again, thank you for this website. I searched the web over and over for everything from symptoms to specific drugs and kept coming back here. ~ Margie 

very lucid...terribly useful to the layman and doctor alike ~ FK

Great site, easy to use and understand, very informative and downloads much faster compared to other related sites. Thank you ~ D.W., South Africa

As a person with CLL/SLL I'm grateful for seminal sites like these that offer broad and in-depth knowledge geared to the layperson. There's nothing else like it. thank you!  ~ MB

Find your website & staff most helpful. Am Canadian so interesting to compare American & Canadian information & reassuring to see how much they agree. Thank-you. 
~ S.H. Lasalle,Quebec, Canada

I was just diagnosed. I have found this website to be a great help. Thank you. I am sure that I will be returning as I move forward on my journey toward healing and well being. ~ Terry

Well done. Very informative. I've been a survivor of NHL since Aug. 2001. I'm a nurse but had very little info until I was diagnosed. This should be available in every Cancer treatment center and every oncologist's office. Thanks for your work. ~ Deedles 

Great Web Site, THANKS
~ T.H.,  Red Dee, Alberta

I found your site by chance while searching for information on stem cell harvesting. I was quite impressed with what I saw! Thank you so much for all of this  information. It answered many of my questions at the touch of a key. I was diagnosed with b-cell lymphoma in my bones in Jan. 2004 (my oncologist said that I was a strange bird since it was only found in the bones). I am now in remission and am in the process of discussing my stem cell harvesting and a bone marrow transplant. I have been in remission for about 2 months. My initial meeting with the bone marrow transplant clinic was quite an eye-opener for me. I guess it brought me out of denial! I am just starting to feel like myself again and the thought of going through the transplant and feeling awful again isn't really something I want to think about right now...but I know that I have to! Thanks for listening and for being there. I'm sure I will be visiting your site quite often!

~ PW, Round Rock, TX

Thank you so much for updating the website [on T-cell Rich LBC lymphoma]. 
It appears to be exactly what I had been searching for.  Thanks again!  BT

Thank you so much for your reply. We have investigated the below and it is unlikely we can go ahead with bexxar or zevalin however I really appreciate you sending the information through. Also I just wanted to let you know your response and the resources you recommended were excellent. Thank you so much. It is really appreciated,
~ Best Regards Sarah, Christchurch, New Zealand

I love this site keep on good work you are second to none - Mr Mugus Maga West Africa

Thank you for the availability of this information. ~ EW, Spring Valley, MN

This is a very informative website and I thank you for making this information available. I was first diagnosed with Stage II Non-Hodgkin's Lymphoma in 1982 and underwent radiation treatments, had my first relapse in 1996 and underwent further radiation treatments to the new site, and a second relapse in 2004 (now Stage III). I am not undergoing any treatments at this time. I have been living with this disease for over 22 years. ~ CO Los Angeles, CA

Thanks for the info below. I greatly appreciate all the info on your
website and your Yahoogroup [nhl-info/follic]. Thanks a lot!

Jean in Seattle

Your site is loaded with information and is very "readable." A friend referred me to your site, as I'm searching for info/clinical trials with mini bone marrow transplants, and found lots to read. Thank you. ~ LM, Monroeville, PA

Thanks, Your site answered all my questions about cbc differential blood test I received!
~ Sharon

Thank you for the web site. It is a source of invaluable information. 
~ Marty, Las Vegas NV

An invaluable site for those affected by this disease. I come here often for reeducation on a cancer that has no "best Practice" treatment. This site has gotten me through many a 
sleepless night. ~ M.T. Perkasiek PA

Just a note of thanks on the site. I have not looked at it much since one prednisone soaked weekend in August last year when I thought I was going on CHOP-R. I was in a compete panic then, and probably read everything on the web relating to my lymphoma during one marathon all-night session. As fate would have it, I dodged that bullet until yesterday. Now, as an old veteran, I think I'll just stroll through this with a more relaxed attitude, at least until I start on the prednisone again, that is. The diet page was the best I have run across (hot teas are fine). I printed out one of the pages and intend to pack it off to the store with me tomorrow. I also ordered the book recommended and intend to incorporate it' suggestions into my diet. The difficulty is that technical info it is really hard to digest after the drugs start taking effect, so I hope it is in language that a 5th grader can understand. I am pretty sure that I will be able to operate a can opener and a microwave on most days. :-)  Again, I appreciate all your hard work on that site. 
~ David (NHL-info)

I find this site extremely helpful. It is very difficult to find a good source of info. This is great. 
~ June, WI 

You are maintaining an excellent resource and I wish you the best of success in your mission. 
~ Christoph U. Lehmann, MD Assistant Professor 
Eudowood Neonatal Pulmonary Division & Division of Health Sciences

This website has been an extremely valuable resource for me as a newly diagnosed fNHL patient. I plan to continue using this resource for the rest of my life or until I am cured. Many thanks to you for your energy, organization, insights, thoughtfulness and caring. ~ Dan P

A friend was just diagnosed with Diffuse Large B Cell Lymphoma. I hate to ask them a lot of questions while the family is trying to understand what this will mean to them. I found your website most helpful. Thank you.  ~ Claire G, VA

The lymphomation web-site has healed me at every level of living with my non-Hodgkin's lymphoma. I could not recommend a better resource to persons living with lymphomas. My sincere appreciation as it has as a direct result, lengthened my life providing the assistance, information, required enabling me to make my treatment decision. ~ C. B, NY

As a newly diagnosed patient with indolent follicular lymphoma facing the difficult decision of whether to watch and wait or receive treatment in order to participate in a trial, I find that your site is absolutely fantastic. I appreciate that the information is backed up with references to both primary and secondary sources so that I can continue my research in the library and make an informed decision. Thank you so much. I am sure we will be sending a donation soon. ~  AJM

I was diagnosed with lymphoma in September and have now completed six cycles of CHOP-R. Cells have shrunk to a manageable size. This was the best website and explanation I have seen on this illness. I have indolent cells which now must be managed.  
~  C.K,  British Columbia, Canada

This site is absolutely invaluable to me in so many ways - factually and emotionally. I cannot possibly thank you enough for compiling and presenting all of this information, not to mention the compassionate and rational approach which under girds the entire effort. How many times I have read this website through my tears and received great and immediate comfort -- either from learning something to keep my fears in check, or simply from knowing that I'm not alone in this battle. Thank you from the bottom of my heart for doing this. ~ Mary B,  CA 

Finding your website has been a God-send for me! I had Lymphocyte Predominant Hodgkin's Disease and it has reared its ugly head after a 20 year remission! My onc wanted to do chemo, but this seemed so aggressive to me, I sought a 2nd opinion from Carol Portlock, MD at Memorial Sloan-Kettering and she is suggesting "wait and watch". Finding this website has given me a ray of hope and encouragement that I am not being lumped into the category of the other more aggresive lymphomas, but that the favorable prognosis and indolent nature of this subtype of HD is being considered for what it is! Finding you and the info and emotional support I have gotten is immeasurable! Please continue this site! ~  J B , FLorida 

I will never forget how I felt the night I discovered the Lymphomation.org site. The feeling was one of empowerment and emotion all combined. ~ Dan (nhl-info)

I just wanted to say thank you to everyone in this group! Since joining the group no to long ago I have become more comfortable knowing that there are others out here with malt lymphoma. For a long while I really felt quite alone. I can't tell you how much easier it is being able to read everything from everyone and learn so much more. I am finished with the radiation treatments but still undergoing some testing, and just knowing that this group of great people are here, I realize that no matter what I can make it through all this. The support felt from this group is awesome, stay together and keep writing, I always read everything written by all of you. 
~ Nancy (NHL-MALT)

Very well put together. Wish a site like this could have been available on Esophagus cancer 5 yrs ago. ~ Cheri, NM

As a newly diagnosed NHL, this is the most well organized, most specific, most useful website I've found so far. Congratulations, and thanks. 
~ Linda P.

This in an absolutely outstanding web-site. One of the best I've ever used. Great Thanks to you - You are saving many lives! And helping hundreds of people find peace of mind while they live with this cancer. As Always, ~ Deborah-Jean L.

I am totally impressed with this web site, I'm happy that i'm not the only one against it. 
~ Mandi W.

Very informative website, I plan to pass some of the information on to help a friend check check similar symptoms. 
~ Jeanne G.

Thanks for this website. I have NHL and appreciate the information you provide. 
~ Victor S.

Thank you for this site...very helpful! ~ Kathy P.

I appreciate a site such as this in gathering new information in my wife's daily struggle with lymphoma. ~ Fred P.

Incredible integrity and service in Lymphomation site. Thank you thank you thank you! ~ Nan B.

Currently pursuing staging and treatment options. Thank you for this site. It has dramatically accelerated my education about my illness, and has helped to ease the overwhelming anxiety that engulfed me upon diagnosis. Thank you for all your hard work! 
Regards, Grant

I really appreciate the info you have taken the time to provide all of us. I feel so ignorant and am grateful to you for the knowledge you share. ~ Marianne

This website contains a lot of useful data to help those diagnosed with lymphoma.
 ~ Lorraine B. Pinckney, MI

Many thanks for this very informative website. I so much appreciate knowing there is something I can do to help myself. I am pushing 75 and for the first time in my life embarking on what looks like it's going to be a dynamic, profitable career as a fine artist and don't want to quit right now. 
~ Joyce S.

Just want to thank you for providing such an informative and supportive web site. Since Mario transformed to non-aggressive it has become even more relevant and I check in even more frequently. ~ Jennifer M.

I have just been diag. with NHL. this site has been very helpful. ~ George D.

Thanks much for all your fine work and time-consuming effort in our behalf. It is much appreciated when those who have the capability give their expertise to help others. ~ Gale in MN

I would also like to take this opportunity to thank you for all the research and hard work you've done with Lymphomation.org and with keeping us all so well informed. ~ Jerry H.


thanx for the info, and the websites, they were very informative. it seems i have a lot of questions to ask, when I return to the hospital. keep you up dated..
 ~ Angie (UK)

Thank you again for your help and great advice that you provided. Unfortunately, my aunt did not survive her last visit to the hospital. Luckily, she had many friends and relatives that visited her during her last days. It's good to know that there are people out there in the world that are ready to help mere strangers.  Best Regards, TP 

Hi, I just wanted to say thanks for the information on PET scans. I go for mine tomorrow morning. Every bit of information helps me to know this test is a good thing. Thanks to Greg for forwarding it to the group. ~ Suzzanne, So CA

Thanks so much! It has been very enlightening to read everyone's experiences with this disease. My father died of lymphoma after being diagnosed for only 4 weeks. It was misdiagnosed (thought it was other things) and not treated for so long there was nothing to be done. I was actually glad he went so fast because he was suffering so much. I also worked in the medical profession as a medical records reviewer/utilization review and saw many things that would make your stomach turn. So, needless to say I am not as trusting as some about my healthcare and the healthcare of loved ones. Especially when you know your life is at stake. My friend is strong and smart, I am sure she will do the best thing for herself, especially with all the support she has. I just want her to be happy for as long as she has, whatever that might be. Thanks again! ~ Alyson P.


What a wonderful web site ..I was diagnosed 2 years ago stage4 non-Hodgkins lymphoma 
~ Cheryl

What a great contribution you are making!! Yes - have searched for trials. Sparse for Mantle Cell but trying to keep current. 
~ Judy C.

Congratulations on the beautiful website. My husband is in third year of remission from aggressive follicular, I'm glad to say. You were very useful to us for a long time and still are. 
~ Devorah T.

Thank you so much for the quick response and leads. At least now I can educate myself a little more while I wait for the results to come in. I was worried because quite a few women in my family have had a hystorectomy and my mom died of renal cancer. 
~ K. R.

Your site is the first place, or person, to ever answer my direct questions about the # of rads in a particular scan. (I knew it must be horrific because of their universal refusal to give me an answer!) 
Thanks again, David H.

First of all I want to tell you that this was really the best and most helpful web-page I found on Non-Hodgkin Lymphoma. Im 35 years old and I was some weeks ago diagnosed to have follicular lymphoma Stage 4 with hepatosplenomegaly and bone marrow involvement. Ironically I worked during my Phd with Lymphoma (mostly Hodgkin lymphoma 
~ V. S. 

Thank you so very much for your investigating, time, caring and information. 
God bless, ~Wendy 

I don't have a question but I do have NHL (low grade - 4 years now). I just found your website and wanted to tell you how much I enjoy it. It has the most information I have seen in a long time. I especially appreciate the videos. They have helped me better understand my "internal defect". :) Thanks again, Maureen R.

Thank you very much. Your information is tremendously valuable to me. I will make some research and if i have any news or another question i will contact you. 
Best regards, Elena.

First off let me say what a terrific job you do with all of the wealth of information you provide to so many of us with Lymphoma. I have used the nhl-info site and the lymphomation (datafork) site many times to obtain information. This has truly been invaluable during this Lymphoma journey. Many thanks for all you do!! 
~ Bill K

I really appreciate all you do with datafork/lymphomation and the message boards. You have such a reasoned and balanced approach to things, and a very nice way of dealing with people. 
~ Marie

I really appreciate the info you have taken the time to provide all of us. I feel so ignorant and am grateful to you for the knowledge you share. ~ Marianne 

Good information for the NHL patient. 
~ James G. 

In my search to find some answers to the questions that come up with the diagnosis of NHL I found this site to be the best. Thanks.
 ~ Jan-Willem R. 

The lymphomation web-site has healed me at every level of living with my non-Hodgkin's lymphoma. I could not recommend a better resource to persons living with lymphomas. My sincere appreciation as it has as a direct result, lengthened my life providing the assistance, information, required enabling me to make my treatment decision. 
~ C. B. Norwich, New York

 

 
Disclaimer:  The information on Lymphomation.org is not intended to be a substitute for 
professional medical advice or to replace your relationship with a physician.
For all medical concerns,  you should always consult your doctor. 
Patients Against Lymphoma, Copyright © 2004,  All Rights Reserved.