The old gray mare ...,

O my goodness

Hello Kyle and Michelle,

You don't know how many times I have thought about you and even more so since this thread started!  I always worry about Kyle and wonder how he is doing.  Such great and happy news.  I know we are all thrilled to hear he is still in remission.  We oldtimers probably all remember what a "deer in the headlights" you were.  You were like our special project.  We were there when Kyle went through not one but two SCTs and you were by his side throughout, always being brave and supportive.  Then graduating from nursing college and finally getting married.  You sent us an invitation to your wedding and we thought seriously about trying to make it.  I am just so happy that you took the time to  write to us, thank you over and over!  Is Diesel still with us? (that big gorgeous dog). Thank you so much for caring for us all.

In our thoughts always,

Becky & Bill

New kid on the block

Hi All, this is my first post. Was in hospital for pneumonua and they found enlarged lymph nodes  on CAT Diagnosed in April 2019 with CLL/SLL Stage IV. Also have 11q deletion and unmutated IGHV. Not good prognosis. Have not started treatment yet. Anticipated starting this month but blood work was good at my appointment on 11/22. Not too many choices for treatment. This is chemo-resistant. Was going to start first treatment in a clinical trial using Ibrtinib/Venetoclax (oral therapy drugs). However....lo and behold....on 11/21, FDA approved Acalabrutinub for CLL! Me and my oncologist are VERY excited. Results of the clinical trials were very positive. Starting treatment in January. I have no symptoms yet other than enlarged lymphs in neck, clavicle and armpits. I am blessed to live on Cape Cod....1.5 hours from Dana Farber Cancer Institute....the best in the world. I am a young 72 yo woman and I am OK with this. It is what it is. Looking forward to the support and sharing from this group.

Hope

Hi Bat and welcome to a club where no one ever dreams of becoming a member.

I do not have CLL/SLL, but, like you, I am a chronic cancer patient - diagnosed with fNHL in late 2015/beginning of 2016 at the age of 52. Had chemo and two years of immunotherapy. All is far from perfect, but I'm still here.

I simply wanted to convey to you that there is hope yet. Here is just one example [https://www.onclive.com/onclive-tv/dr-barr-on-updated-resonate-data-in-ighvmutant-cll]:

"Patients with unmutated IGHV status seem to respond to ibrutinib just as well as patients with mutated IGHV status, according to Barr. Patients with other high-risk features, such as 11q deletion, 17p deletion, and TP53 mutations responded nearly as well as patients with more favorable risk factors. Patients with 11q deletion responded exceptionally well with a median PFS approaching 60 months."

 And, as you seem to be well aware already, hematology-oncology is making giant strides these days. Although no one may ever tell you you are rid of this, it can likely be managed for as many years as you originally expected to live.

Just curious - is there any particular reason you decided not to give Ibrutinib a try?

Kind regards,

PBL

P.S.: You may want to start your own thread with your specifics in the title, as that could draw others with the same into the conversation.

They just shot one of the other old gray mares

The owners of www.cancerforums.net announced last week that they are shutting the forum down. 60,000 regitered members, even if only 2,000 or so are active. Boom. Gone. They referred us to  the quack magnet "health Boards", which has almost zero activity and rules that are unworkable. Oh well...

 

Time passes

Looking back, I see that I joined this forum just before my 6th round of R-EPOCH. I only wish that I had found it sooner, as it would have made my journey so much easier.  I would have known how to cope with my miserable bladder pain (cytoxan), my crushing insomnia (prednisone), the dreaded constipation (vincristine), the overwhelming fatigue (all of it). Most importantly, I would have known that there was light at the end of the tunnel, that these things would mostly pass, and that there were others who shared my experience and could offer support and advice.  I have tried in my way to return the gifts of support that others have given me.  I thank you for your kind words and our offline conversations, Shady.

To everybody else: I thank you from the bottom of my heart and I hope that others looking in will feel comfortable seeking input from us "old grey mares".  As I approach my 3 year mark, I find myself again in the throes of unexplained anxiety.  Not sure why...It feels odd given how well the past year has gone.  I know some (many?) of you share this intermittent experience.  Hopefully it will pass soon.

Happy holidays to all.

-Evarista

Thank you for sharing

I think you would all be surprised  by how many people you have helped over the years.   When my husband developed DLBCL NHL in 2015 I came to this site for information and have followed it ever since.  He would never have joined because he is not comfortable using the computer and doesn't talk about medical issues very much.  When he suffered excruciating headaches after the methotrexate treatments we learned that he was not the only one who had that issue.  We learned about remedies for constipation, loss of appetitie, taste, and smell and dealing with the highs and lows of prednisone.  We learned that it wasn't unusual to be fatigued for quite a while after chemo and radiation and it might take a long time for his blood work to return to normal.  We learned that the neuropathy in his feet is fairly common after RCHOP.  There are so many things that we have learned because you have been willing to share your stories.  I didn't post very much because  I am only a caregiver and didn't have the same personal experiences that you all have had, but that didn't mean I wasn't following the conversations and learning valuable tips for helping my husband cope.  We learned so much from all of you on this site and wish each of you a very happy holiday season.       Simone

hi Simone

I am a caregiver also so I understand how you feel and how you have felt through your husband's ordeal.  Please know though that caregivers are very encouraging also.  You just proved that.

Becky

Teamwork

I guess we are all on a team that we didn't want to be play on. Now that we're on the team we all want to do everything we can to pull together and win.  I just laughed at myself because I used a sports analogy.  Before we were married I was sports challenged.  My husband had to explain football to me.  Anyway, I am glad I can be his teammate and I am rooting for each one of you on this team we are all on.          Happy Holidays to all.             Simone  

Same question

Is this site really being shut down? I really hope not