Two Years ago I was diagnosed with CLL. W&W since then and nothing much going on.... until this week.
It has "morphed"( Richter's Transformation) at least the pathology results say thats what it looks like.
Tomorrow I will see my surgeon and will set date and time for "port". This seems to have happened overnight .... after 2 years of W&W.. what was I thnking? Guess I thought I could wait and watch forever.
I am 66 years old and my fear is that my age will determine how much treatment they are willing to give me. Question is: Does age have a deciding factor in what the Drs. are willing to do or try?
I do have great confidence in my onc. I think he will do whatever it takes to keep me going.... I hope my age will not work against me. Has anyone experienced this worry about limits on treatment due to age?
Thanks for taking time to read this.
Good luck.... It is good you have confidence in you Health team. that is a huge. I do not have any answers.. You getting a Port which will
save you being needled some much..
One day at a time.. Keep your updates posted. I know I am interested in understanding more about this topic. and sharing your first hand
experience will put some light on other people paths. and empower them to ask better question to there health staff. So they can choose better
options.. for treatments
best results fast.. good luck from CLL poster
Thank you for your reply and your interest. Maybe, at this stage, I am a little paranoid and my age will have nothing to do with any treatment or not. This is going to be one heck of a learning curve... I hope that I do have something to contribute to others that are going through this life struggle. Its early days for me so I will learn more from all of you and hope to cope as well. Checking in.... not out.... lol
Can I get you a cup of coffee?? Cozy on up around the table and get comfy...we're here to help you thru.
The way I understand richters is your CLL is/has transformed to NHL - do I have that right? And now you're looking at chemo to combat the NHL.... correct me anywhere I'm wrong.
Ports are a good thing - mine has been serving me faithfully since late 2001 and my poor veins would have not survived the rigors of chemo.
As for you age being a factor - forgeddaboutit.... You're reasonably healthy otherwise? We have had a lot in their 60's and even 70's who've been thru chemo and even 1 I know of in his mid-70's when he had a SCT and is doing just fine now - even travelling the world with his lovely wife. So if that doesn't give you a wee bit of encouragement, don't know what will. lol
Which chemo are you looking at? I've had a variety of them for NHL over the years and we're all here to walk this leg of your journey with you if you'd like.
Hey Sharon thanks for the invite.....
Coffee does sound good ... has to be decaf.....yuk lol as my husband says what's the point!?
My "cocktail" will be chop-R. It will start next Friday. My Dr has said this will be the first of 6 treatment for getting me ready for a stem cell transplant. be cause the chemo alone will do nothing for this cancer..... prognosis without the stem cell replacement is 8 months... with it?? don't know.....
Yes, my CLL/SLL has transformed into diffuse large cell lymphoma. A whole different enchilada. (NHL)
They cannot say how or why it does, but the medical pros are on it.... lol
How long does the transplant actually work?
I will have my port in two days before the chemo starts.
Everyone says it will be so much easier.
My question is: you will still be sticking the same area over and over... how will that not become a really sore area? I also did not know that the whole port is under the skin... I thought they were opened to the outside of your body....? shows how much I knew about any of this..... 9 Years! have you had to have it replaced or changed out or what? thats a long time to have one for sure.
I so appreciate hearing from you..... LIzbeth
Oh my - it appeared I had abandoned you....I'm so sorry for not replying sooner. My mind seems in a spin and all days blur together anymore. Was a topsey-turvey month of March for me and hoping April will bring some calm seas.
So you've had your first R-CHOP by now? How did things go? Doing alright with the port? Having it just 2 days prior to chemo would be a bit uncomfortable I'd think. If I remember correctly mine was in for at least a week or 2 before chemo. At least give the incision a chance to heal. Being poke just once every 3 or 4 weeks for chemo shouldn't leave you sore. Heck, last year I had ESHAP which is a chemo given 5 days in a row every 4 weeks. Had the option of leaving the line in or being poked each day. I chose being poked - figured it would be less of a pain than figuring out what to do with the tubes.
So when you're up to it, please give an update. Also any questions you might have....fire away. There's about a bazillion things the docs never seem to get around to telling us about side effects, things to expect, and such.
Sending kind thoughts and a nice hot cup of coffee..... with a piece of pie?
I responded on the thread I originally started when my husband was diagnosed last May with a Richter's Transformation and on the one started by Robert.
My husband was diagnosed with atypical CLL in 2003, and although his WBC was rising steadily, he was completely asymptomatic and therefore had never been treated. All that changed when he developed rapid onset of B symptoms last May and CT/PET scans, along with very abnormal blood work, indicated a Richter's Transformation raging in his spleen. His oncologist started him on R-CHOP the next day because the DLBCL was highly aggressive.
He received the R-CHOP at two week intervals and other than a problem with cellulitis, and thus the need to implant a port, he responded very well and completed treatment in August. Subsequent CT/PET scans and blood work indicate that he has a CR for both the DLBCL and the CLL. His onc. monitors him every 3 months and no further treatment has been needed at this time. His blood work is completely normal.
As soon as he was diagnosed with Richter's, I found others who had experienced transformations and two were still enjoying life 2 and 6 years post R-CHOP. That gave us a great deal of hope and encouragement! One had radiation on the lymph node but neither had any other follow-up treatment such as a transplant. My husband's oncologist, who is the Chief of the Lymphoma Service at Sloan-Kettering, said no further treatment was necessary unless he relapsed within a two year period. We went for a second and third opinion by CLL experts just to be sure we were comfortable with the decision. Well, as comfortable as one can be under these circumstances that is.
I'm wondering why a transplant was recommended after the completion of R-CHOP? Was there prior chemo. treatment for the CLL? Were there any other circumstances that were cited as reasons to suggest transplant? Aggressive CLL disease? Poor prognostic markers?
Take care all!
I am hoping I can talk to someone that has been dealing with Richter's transformation. We are currently waiting for an officialy diagnosis, but we are pretty certain my father's CLL of four years has become Richter's Transformation. We are hoping to find some positive news to have for my father once he is given a potitive dx.
Regarding the port:
My husband had a PowerPort surgically implanted in his chest after the first R-CHOP chemo. treatment. He developed cellulitis at the infusion site and needed to be briefly hospitalized to receive IV antibiotics. The chemo. nurses suggested that he use lidocaine ointment over the port (it's under the skin) about 30-45 minutes prior to the infusion. A special prong is "plugged" into the port to access it.The lidocaine made him completely numb and he never felt a thing.
The port is also used to infuse the dye contrast for CT scans but only specially trained nurses can access the port. The pblebotomist can't so blood isn't drawn from the port for routine blood work. Too bad...
If the port isn't used regularly, it must be flushed with heparin by the nurse every 4-6 weeks. My husband completed treatment last August and still has his port. It can last for years if flushed properly and no infection develops at the site. My husband has a small bump under the skin in his upper chest and he says he doesn't even know it's there at this point. It was initially sore after the implant was perfomed but the lidocaine took care of that.
There is information about Richter's syndrome on the excellent "CLL topics" site. I have attached a link to one of the recent articles from CLL Topics. This excellent site also has other articles and info about Richter's. http://updates.clltopics.org/653-richters-syndrome
Thanks for your quick response! Yes, we have reviewed that info. That was one of two helpful things we found. There is not a lot of info out there. If anyone has any other recommendations, like on a good expert in the So. Cal. area for Richter's Transformation, we would love oto hear from you...Thanks!