Hello out there...
My husband, age 34, was dx with Castleman's Disease (hyaline-vascular) in 2003, right after his 30th birthday. He had a single 6 cm pelvic tumor, which was surgically removed. Under some poor medical advice, he did not have a follow-up CT until a year later, and it showed that the tumor had returned, and was about 3cm. He saw Dr VanRhee at UAMS, who suggested Rituxan treatment. He went through 4 cycles, and the tumor didn't budge. So they couldn't figure out WHAT to do next - some said surgery, some said radiation, some just plain didn't know. So they took the "watch and wait" approach.
Now his CT & PET scans are showing enlarged lymph nodes & increased PET activity in the chest and lower abdomen. His oncologist here in Columbus does not yet know whether this is the Castleman's proliferating, or if it's a form of Lymphoma (most likely Follicular Lymphoma).
I am disappointed at the lack of information out there about this disease, and I'm hoping to find other people whose lives have been touched by it. I have a rare form of cancer called GastroIntestinal Stromal Tumor (GIST), and I'm lucky enough to have access to a wonderful online support community where we share information, compare stories, and just vent. I'd love to see something like that take form for Castlemans as well. So if this disease has touched your life, PLEASE contact me through this blog & share your story.
Thanks!
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10 comments:
I just spotted your post on Jessica's blog. Nice to see you in passing ;).
Rachel
I was diagnosed with Castleman's Disease last July have abdominal surgery to have a mass removed from below my spleen. I had rituxan treatments every three weeks from August through November. I now see my oncologist every three months.
--Becky janglyjewels@highland.net
Hi! My name is Amber and I was dx with Castlemans April 1st 2008 following the removal of a couple of lymph nodes from my left neck. I was refered to an Oncologist and had a CT and a Pet scan done. They foud a grapefruit sized tumor in my chest. I had a Median Sternotomy (chest cracking) on May 5th. The tumor weighed a pound and rested between my lungs in front of my heart. The doctor told me it would have killed me in my sleep had I been a regular back sleeper! Since then I have regular blood tests and visits to the Onco. I have been sick a TON but fairing well. I love knowing there are other people out there battleing Castlemans. It brings me comfort. With the lack of research and public reconition of Castlemans it can feel awfully lonley. I barley turned 25 just after leaving the ICU this last May. Very surreal. I wish the best of luck to you and your husband!
Keep in touch!
Amber
I am a castlemans patient of about 3 years now. I am 33 and have a wife and 2 year old son. I have been traveling to little rock to see Dr. Van Rhee for about 2 years now. My family felt like it was the best place to go to be proactive in the treatment of CD. As of my last check up in Jan. I was clear of signs of CD. I wish you the same fortune in your battle with CD.
im a 22 yr old female who was dx with CD. I'v had it for at least 9 months that we know of. i had a golf ball sized tumor that was removed for my abdominal area. 6 months later they decide to give me a CT and that showed mult. ones in my neck and a 10 cm one under my right under arm which is rare. 2 months later im still going through a run around with the doctors and i just got referred to someone at the IU medical center to someone who acually knows what they are dealing with. So we will see what happens next. good luck to you all. I know exactly what you are going through about not getting any answers.
Hi my husband is 43 years old and was diagnosed a year ago this month with CD, boy did it blow us away he has been healthy all his life so we where like where on earth did this come from.. I would love to talk to other's who have CD or other's who have loved ones with it..
Hi, I am 20 years old,I have a one year old little boy. In oct, 2010 I was having abdominal pains, and in trying to find out what was going on(turned out to be appenicitis) I had a CT scan, the scan must have shown some piece of my "tumor" so they scanned my chest and found a tumor about 10cm long which then they thought was on my lungs. after my appendectomy I had an MRI which showed this more clearly and it was along my esophogus, my Dr decided to do a biopsy and try to get some fluid out of this cyst he thought I had, they couldnt get any fluid only blood... on the 2nd of november they decided to remove whatever it was. after the surgery the doctors were all stunned...no clue what they had just taken out of my body (very painful surgery, thercotomy, cut from under my armpit to my back and peel apart the ribs) by the end of my hospital stay he told me I had a Castleman's tumor, very rare. I am now told I have to start regularly seeing an oncologist. I'm glad there are others out there, and even some as young as me.
Hang in there Chelseed03. I know how scary it sound to have to see the Oncologist regularly. It is not so bad. You will get used to all the poking and probing! I was told that the doctors estimated 18-36 months before Multi-centric CD took my life. May will be 36 months and I am doing SO well! I am excited to prove them all wrong! But please don't let that scare you, my case is rare in this rare disease. Just keep your mind open. Not much is known about Castleman's and I think sometimes the doctors don't know what to really do or say. But we can beat it! If any of you are on Facebook you can follow Castleman's Awareness and Research Effort. They host various fundraising events that go solely Castleman's Research. Someday I hope to make my way to an event... Anyway check it out. Good luck everyone!
Hi! My son was diagnosed Jan. 2012 with multicentric CD. He is only 16. He is undergoing chemo every 3 weeks, along with steroids. Also he is doing tocilizumab every other week. He seems to be doing better. His kidneys were in failure for 2 months and he was on dialysis daily for a while. I haven't found much support for this disease out there, so I'm glad I found this blog! It helps to know we're not alone.
Hi. When I was in high school, I had this growth in my armpit. I was worried about it because it felt like a meatball. My mom said it was a fatty deposit. But that was dumb because I didn't have it on the other side. I got outpatient surgery and they removed it and maybe a little of upper breast tissue. Anyhow the surgeon told me everything would be fine. I might have been 18 years old. Well now I am 29. Earlier this year I started having upper quadrant pain towards my back. I felt sharp pain. I suspected a kidney problem. I started getting really easily nauseated and over the counter dramamine stopped working. I thought I might be pregnant but it was negative. A few times I was driving and my pain became so intense that I had to pull over. It was like that for about 5 months. One day I urinated blood. I went to the hospital to check it out and they didnt find anything wrong with my xray. I demanded an ultrasound and they showed something abnormal. A 4inch tumor which appeared attached to my pancreas and liver. They thought it might be an extra liver lobule but did an MRI and thought it was a different texture. My doctor told me he thought it was lymphoma and after bloodwork thought it might be like leukemia because I had an elevated leukocytes count. But it negative for pancreatic cancer or stomach cancer after an endoscopy was done. They did surgery and removed my tumor which they thought was growing in a very dangerous location. Diagnosis castlemans disease. I also had my gallbladder removed "just in case" because they didnt know the cause of my pain. My nausea eventually subsided. My pain still comes and goes but only briefly and I was given gabapentin for nerve pain that I took only for one month. I look back and know my tumor in my armpit and the one near my pancreas were caused by castlemans. My doctors just dismissed me like nothing and didnt even offer advice or followup. My muscles often ache in my neck/upperback and after getting a massage of 1 hour I feel deep relief but I also feel extremely dizzy to the point that once I felt very lightheaded and the feeling didnt subside. Occasionally I feel moments of lightheadedness or nausea but I take ondansatron and it helps me immensely. My email is jramireze@broncs.utpa.edu if anyone ever wants to contact me in the next few years with advice or to share something. JENNI
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