Sun 4 Jan, 2009
This fall I came down with an enduring cold and, for the first time in my life, the lymph nodes in my neck were swollen. I went to the clinic, where the doctor prescribed me amoxicillan. A few days after I started taking it, I began to itch uncontrollably. I went back to the clinic, where they told me I might be having an allergic reaction, so I stopped taking the antibiotic. A few days after that, even though I was no longer taking the drug, the itching grew worse and worse until finally I was completely covered in hives, from head to toe. I was miserable. The clinic staff sent me to a dermatologist, who thought I might have mono and prescribed Prednisone for the hives. I was returned to the clinic, where I tested negative for mono.
It took some time but eventually my skin mostly returned to normal. However, I noticed that I still had a persistant cold and the lymph nodes in my neck were still swollen. I was finally able to get into my regular doctor, who prescribed Cefuroxime and told me to contact him if I wasn’t feeling better within a few days. Not only did I not improve, I began to feel worse, so I returned to the doctor, who diagnosed me with bronchitis and put me on more Prednisone, for the bronchitis and a lingering rash from the initial breakout, and a different, “stronger” antibiotic, Levaquin.
This time, I thought we had conquered whatever was bothering me. The cold symptoms went away and I could no longer see or feel the lymph nodes in my neck. However, a couple of days after I took my last drug doses, I was taking a shower and discovered a golf ball sized lymph node in my armpit. I hurried back to the doctor that very day. I was given another prescription for Levaquin and sent off to have a chest CT scan, which showed multiple swollen lymph nodes. It was at this point that my doctor began to suspect lymphoma. I returned the next day for a full chest/abdominal CT scan, which showed swollen lymph nodes throughout my body, as well as a swollen spleen. Furthermore, I began having hives again, this time I believed from the Levaquin, so I went off that and back on Prednisone. A mammogram came back negative.
I was referred to an oncologist, who had me undergo a needle biopsy of a lymph node in the armpit. It came back negative for b-cell lymphoma but as “reactive.” So I had a bone marrow biopsy done, which came back negative but “hyperactive.” I had a full biopsy of the lymph node, which came back negative but “reactive.” Another CT scan showed that my lymph nodes were more swollen than they were the first time they were analyzed. Finally, I had one last full lymph node biopsy done and the sample was sent to the Mayo clinic in order for the pathologists to specifically look for t-cell lymphoma. They found it.
This entire process took three months. I’m frustrated that it took so long. On the other hand, I’m glad that my oncologist was as persisitant as he was. Obviously, time is precious in a battle like this.
I have been diagnosed with angioimmunoblastic t-cell lymphoma. It is a rare but aggressive form of lymphoma. I am taking chemotherapy once every three weeks. The drugs given to me are Vincristine, Adriamycin, and Cytoxan. I then take 100 mg of Prednisone for 5 days after each treatment. After three sessions, I will have a CT scan in order to see if the treatment appears to be working. If it does, I will most likely continue for a total of six months. It is possible that once this is finished, I will have a stem cell transplant.
I am terrified. Sometimes I get angry or depressed. Or both. But I will do what I can to fight this disease. I want more than anything, anything in the world, to live through this, to come out on top, to be able to live a happy healthy life for many years when this is over.
After all, I have my four dogs and my six cats. By the way, they’re going to be helping me every step of the way.
BeckyOKeefe says:
Sue - please know that I’m thinking about you and am here to help in anyway I can. My brother went through this a few years back, a different form of cancer, so I have some idea about what you are going through. Do not hesitate to ask for help. And please also don’t hesitate to take all the help you can get. Be strong! Sincerely, Becky
Jayne Spielman says:
Hi Sue - my best wishes are with you. Both my parents had this type of lymphoma. (Yes, very unusual.)
You might try looking at this angioimmunoblastic bulletin board topic. It sounds like some other people are using similar chemo. (I recently discovered it.) You will see that different people are on different protocols but you will find a bunch of other people who have this rare type of lymphoma.
http://ubb-lls.leukemia-lymphoma.org/ubb/Forum33/HTML/000028-2.html
I hope you continue to tolerate your treatments and yes, it can be scary but be strong because that really does count for a lot.
With my best wishes, Jayne
charity says:
sue.. wow.. what a long road to get diagnosed. i cannot even imagine being on 100mg of pred, much less the chemo!
you’re an inspiration! partly cuz you have more animals than me, and that’s hard to find these days! hah! i clicked your blog link cuz i thought it said “animal midwife” and i thought that was an interesting career choice.. haha!
anyhow, i know we haven’t talked much, but wanted to give you a shoutout here! ((hugs))
Sondra Rademacher says:
Hi Sue,
Since finding your site, I wanted to check and see how your treatment is going and how you are feeling? I am very interested in your progress and would like to keep in touch with you. I wanted to email you because I was just diagnosed with Angioimmunoblastic T-Cell Lymphoma on May 12, 2009. My story is very similar to yours, almost to the (T) except my diagnosis took a little less than 19 days for Mayo - Rochester, Mn. to diagnose. I had gone into the Doctor on April 13, 2009 because I had a terrible cough and coughing up quite a bit of mucus and was diagnosed with bronchitis which I was given azithramicin for 5 days (can’t remember the last time I had bronchitis, probably 18 years old). After completing my 5 day dose, I started getting tingling feelings in my fingers, toes and the tip of my tongue and called in to see if this was a side effect from the medication. I was told no and then a couple of days later, I was at a seminar and was experiencing terrible back pain which led me to the ER in the city I was at. They found nothing on the chest x-ray but found that my blood platelets were at 27,000 and advised me to see my doctor when I returned to my home town. The next day when I got home I went to urgent care and they indicated that my blood platelets were at 15,000 and admitted me to the hospital for 5 days where they ran CAT scan, MRI, numerous x-rays, conducted a bone marrow biopsy, a lymph node biopsy taken from under my right armpit, PET scan etc. All of these were sent to the Mayo Health Clinic in Rochester, Mn to test and come back with a diagnois which I received this week. Iam 49 years old and have always been in perfect health with no surgeries, hospitializations nor children but have a wonderful husband and a bichon friese that I have loved for going on 14 years now (the bichon that is), my husband and I have been married for 2 years now and I do love him to death also. Anyway, I will be going to Rochester next week to meet with Dr. Joseph Colgan who has been with the Mayo Clinic for 40 some years. I have been told by my doctor we will start on CHOP Chemotherapy and that it is the most effective and that my treatment will be chemo every 3 weeks (1 X in every three weeks) for 6 X which is about (18 weeks)and about 3 hours per treatment. Is this the same type of treatment you are on? I have not have any B symtoms but have been told that it is because I am on Predisone and it will mask some of the symtoms. My doctor believes I am in stage IV. Please email me at my work address which is sondra.rademacher@state.mn.us
I look forward to hearing from you and hope you are getting along ok. Take Care!
Sondra Rademacher says:
Hi Sue,
Sorry I haven’t been in touch, have had a lot going on since we last corresponded! How did your results from your marrow biopsy and CT scan come out on May 14th? I pray you got the news that all is clear!
I requested a referral from my Doctor here in Mankato to be set up with someone in Rochester to see me after I received my diagnosis on May 12th. Even though my biopsy was also reviewed by the Mayo Clinic before being diagnosed, I really felt I needed to have someone in Rochester look everything over. I met with Dr. Joesph Colgan at the Mayo Clinic on the 19th and after he reviewed all of my tests including the MRI, CT’s, PET, Bone Marrow Biopsy, Rt Axilla biopsy, MUGO, and CBC’s since April 23rd and got to examine me, he is not 100% sure that my diagnosis is correct. He told me that since I have been on Prednisone since being in the hospital on April 24th and not getting the Pet Scan done until May 12th, the prednisone could be masking the scan results however, he is not willing to take the risk of getting me started with AITL aggressive chemotherapy treatment until he is 100% sure this is the lymphoma he is dealing with. There were too many unanswered questions on the Bone Marrow Biopsy and the Axilla Biopsy that were not adding up. I have been having alot of numbness and tingling in my hands, feet and nose area which has been on-going so he had me see a neurologist at Mayo and they did a EMG test which came out fine but decided to go ahead and do a Spinal Tap just to make sure that there isn’t any lymphoma in my Central Nervous System. Hope to hear on those results today from Mayo. In the mean time, the Mayo Clinic has decided to have me drop down to 40 mg of Prednisone this week and down 10 mg there after each week until I am off so they can re-evaluate my diagnosis. I would assume they will be doing another biopsy at that time. I am having a heck of a time keeping my platelets up, I had a CBC in Rochester on May 19th with 242,000 platelets and today, May 26th they are back down to 89,000. Not sure what they will coordinate with Mayo now that they are going back down, possibly another transfusion. Did you have any problems with your platelet levels Susan? I was somewhat hopeful after leaving Rochester on Thursday night but not knowing the unknown has put me right back to worrying day and night and I seldom sleep.
I want to hear some good news today and I am hoping that you have good news to tell me on your end. Let me know!
Talk to you soon,
Sondra
admin says:
You know, I didn’t have any problems with my platelets. I had them tested before the biopsies and no one ever said anything about anything being wrong with them. No one said anything when I would have my weekly blood tests during chemo, either.
I also never experienced any tingling.
My CT Scan showed no pathological findings. I am still waiting to hear about the t-cell gene rearrangement test done on my bone marrow. I am going to call tomorrow if I don’t hear anything today. I am going to see a transplant doctor today. My doc said he doesn’t think I need a bone marrow transplant at this time since the cancer appears to be in remission and I told him that I read onliine that without one my chances of survival are small. He said he understood that NOT to be the case, but wanted to send me to a transplant doctor for a second opinion.
I would love it if we could continue to share stories. It helps me as I don’t know anyone else that’s ever been diagnosed with this.
steve says:
Sue,
Tomorrow I will be in remission for four years with the same form of cancer. You can beat it. Just be positive, exercise and be stubborn. Cancer sucks however you are bigger than it. The treatment you are taking is what I went through and was successful. Get busy living!
admin says:
Steve, did you have the high-dose chemo with a stem cell transplant or just the regular CHOP chemo? I only had the CHOP. I am so happy to hear that you are in remission. A couple of other people with this disease have found this website and I’m sure they’ll be happy also to read your comment. Thank you so much for brightening my day and I wish you well.
Colette says:
Hi, my name is Colette. My son, Christopher, is 20 years old and has angioimmunoblastic t-cell. We are in AZ and he is being treated at Scottsdale Mayo Clinic. Diagnosing procedure similar to used, i.e. mono, epstein-barr, etc. It took from 9/2008 to 2/2009 for a confirmation of AITL and transfer to Mayo. We begin collection for a bone stem transfusion. CHOP only worked for 3-4 cycles. We were switched to another chemo, and are now preparing for bone stem. Without the bone stem, prognosis is poor. Steve, I am glad to year your remission is at four years, and hope you ares till doing well. Please let me know if you are. Obviously, as my son is only 20 years old, this diagnosis has me positively terrified. In addition, I have been a medical transcriptionist for 15+ years, so I am somewhat familiar with the statistics. I am interested in any new and developing trials, medications, and/or procedures regarding this illness, so please everyone share any info available, and I will do the same.
I hope to hear everyone is doing okay, and my prayers are with you! Thank you.
admin says:
Colette, I’m very sorry to hear about your son. More and more I find people that are so young that are diagnosed with that disease. When I was diagnosed, I was told that it was really much more often found in older people. I am 38. I did six sessions of CHOP. After the first three, my lymph node system appeared normal in a CT scan. It still appears normal, so I am hoping that I will be as lucky as Steve. I wish the best for us all.
Colette says:
Hi Admin. Thanks you for commenting, and I have to tell you, you are the closest one in age to my son I have heard from yet. You are correct about this disease usually being in older people. I have been looking for “adolescent” support groups for my son and have found this to be difficult as well. There seem to be groups for older cancer victims, pediatric victims, relatives, etc., but support groups for the 20 to 30-year-olds is tough to find! Hopefully, we will find something, otherwise, I will have to create one - LOL. Whatever it takes, right? Have a good nite! Thanks again.
Henri Lichenstein says:
Hello Sue, I just found your post, and am very sorry to read about your illness. My husband works for a company which is doing research for a new drug to combat this type of cancer and is looking for patients who might be eligible to be part of the trials. Just wanted to let others know about alternatives just in case current treatments aren’t helping. I wish the best for all. Here is his request- To all with peripheral T-cell lymphoma. The company I work for, TopoTarget has an investigational drug for peripheral T-cell lymphoma that is currently recruiting patients in a clinical trial. Please see http://clinicaltrials.gov/ct2/show/NCT00274651?term=belinostat&rank=4 or contact me for more details.
Thanks,
Henri
hlichens@topotarget.com
Jen Kearney says:
my dad was just diagnosed with T-cell lymphoma (angioimmunoblastic) we are starting chemo (CHOP) tomorrow. this is all new to us, any info re: this disease would be appreciated. all I have read does not sound good? thank you and look forward to hearing from you.
Linda Nelson says:
Hi Sue I sure hope you are doing better and continue to do so. My husband was recently diagnosed with angioimmunoblastic as well. Only, his diagnosis did not come until after 2 years and many tests. He was diagnosed by the Mayo Clinic but just as we were going to start the CHOP treatment his base pet scan before treatment was improved from all the others so we are once again waiting as the doctor thinks the last pet scan was wrong and is going to repeat it. I would appreciate any info anyone can give me on this disease. Hang in there, Jen.
Tara V says:
My father in law was diagnosed back in February with Angioblastic T-Cell Lymphoma. He too had his bone marrow tested and did not have it there. At the time the doctor recommended 6 sessions of CHOP with the Prednisone given intermittently. He had a scan after the 4th treatment and it looked great, the lymph nodes shrunk etc. At this point he returned to the UK (he has a home in Florida and England). He finished his last two Chop treatments and was hopeful. He then landed in the hospital because he had low blood pressure and anemia and collapsed (I think its called syncope)?? At that time they did a scan and saw something suspicious so the ordered a PET scan. Unfortunately, the lymphoma had returned with a vengeance. It was now a stage IVb, and had spread to his bones, bone marrow and lungs. They gave him a now terminal diagnosis. They said he now has 3-5 months with no treatment or aprox. 10 months with oral chemo, pred and some other meds. He opted for that and again wound up in the hospital for syncope. Now he is off all the chemo meds because he had an upper respitory infection, and had to go on antibiotics.
He hopes to return to Fla in November. We have been in contact with Tampa Moffit and MD Anderson in Texas. We feel at a loss and haven’t meat anyone else with this condition. We feel like a clinical trial is our last hope.
My F.I.L. has felt so weak since just before diagnosis and had had 3 or 4 transfusions… What is your next step/option???
Tara V says:
The doctors feel that the CHOP stopped working somewhere between the 4/5 session. He was INSTANTLY sick again. He has never felt better unfortunately. Very sad. He was in hospital AGAIN last night for transfusion…he can’t keep his RBC up….
Milford Okken says:
Aloha, I like your site! I will be back again.