The old gray mare ...,

I have thought about this a lot, even before you posed this question. Although I read the forum every day and care deeply about everyone here, I rarely post any more. It seems to me there used to be both more compassion and more levity. And a much more vigorous participation. 

I wonder if this is the natural result of a different group of people creating a different culture? Which is fine.

Or is this a reflection of our current national mood? I hope not.

Wishing heealth and healing for all,

Rocquie

Greetings Warriors,

I also check the board a couple of times a week, but don't often post.  I have past my 1-1/2 yrs in remission mark recently and there are now some days where I don't think much about the trauma of the diagnosis and extensive treatment.  I do appreciate many of the posts here and the information provided, especially from some of our veteran survivors!  I am now to a point where I can work cancer around my life, instead of it ruling my life.  I do still suffer from fatigue and over-focus at times on disease-related thoughts, but this seems to be lessening over time.  There are all kinds of things to fret and worry about in life, but I try to remind myself that I am just wasting time and energy that could be spent on enjoying the good things in life!  Afterall, life is  dangerous business, but it sure beats the alternative!  I hope you all are able to live your best lives each day!    

I am very attached to this forum, I really am.  I find the vast majority of people here kind, helpful, straightforward, and even blunt when bluntness is called for.  I don't post much anymore, but still check in almost daily.  I want to be here if someone "needs" me.  I expect many others feel the same.

I look at and participate in a number of different forums around the interweb universe, some lymphoma/health related, others completely different (e.g., travel).  A frustration with this particular site, IMO, is it's failure to keep up with forum technology.  I cannot think of a single other forum where I could not log in, click on my name, and see my own posting history. Having to search for an old thread that exactly answers a new person's questions can be so difficult and sometimes impossible.  If the Mods are following:  this is something that can be fixed!  I do like that I can read posts without having to log in though.

I also think that there are probably many more forums for people to participate in than there were when we old-timers joined...Has it been 2 years already. 

Be well, all

I check in about once a week, maybe more if I'm feeling nostalgic. You all helped me through my diagnosis and treatment more than you will ever know.  Seriously.  And you still do help me.  I am almost three years in remission, still struggling with fatigue.  Realizing that I have aged so much since 1026 but at almost 64 I try to recognize that it would have happened regardless!  And as you all have often reminded me, it's so much better to still be here, but I often sing the old grey mare about myself!  Happy Wednesday!

Pat

I took a break from the group when we retired and moved to the river. At that time I had just relapsed and was facing treatment again in a new town with a new doctor and it was all overwhelming. I was scared and so disappointed that my cancer had come back after just 3 years, and really didn't want to share my fear with the group. Luckily my new doctor knocked my cancer back again and I was able to regain my confidence, so I focused on enjoying our retirement in our new location. 18 months later it came back again and more treatment was needed and it was at this time we decided to move back from the river to be closer to the kids again. After we got back and settled in I joined the group again and check in often, but don't always post because the people have all changed and I'm not familiar with their type of Lymphoma so hold back on discussion, or advice. Back in 2010 there were many of us dealing with the same type of Lymphoma and the discussions were much more lively and informative and many friendships were formed. I'm still in contact with John Watson and feel badly that he was booted from the group. Yes. he got very political at times, but he also helped a lot of people with non political discussions. I think I was turned off by the adminstrators of the site for being so harsh with him because certain individuals disagreed with him politically. I just think we should all try to be more tolerant and maybe practice to "agree to diasagree" respectfully and not let things like politics get in the way of helping each other with our cancer problems. Just my opinion. For those that care to know, John is doing good and misses you all and asks how everyone is doing...Max, Becky and Bill and others. I try to keep him informed. Much love to all...Sue

Follicular NHL-stage 3-grade2-type A- diagnosed June 2010. 

Once I knew what to expect all went well. Day 3 - 4 I would get the energy spike. Not a big manaical kind. Just more energy. Day 5 I was usually trying to catch up on stuff. After the first round I learned that on the first day of no prednisone (day 6) I took a nap even if I didn't feel tired. Then day 6 & 7 I didn't feel like a zombie. Just somewhat tired. I just kept telling myself it was what I needed to get through to fight the cancer. That was the R-Chop.

When ti didn't quite get it all they scheduled my for Stem call. The first part of the prep was RICE. 3 cycles and each one was about 3 1/2 days in the hospital. Then I started the stem cell gathering. That did not go well. After 2 days they had less than half what was needed. This process knocks down the platlets. Normally the body can re-build those somewhat in 12 hours. Not me. By the 3rd day the Dr said they were too low to continue. All was put on hold then after a few months they did the blood test and decided to wait a little longer. By mid-year of the second year the stem cell was taken off the schedule. That was around May 2016. Since then the counts (red, white & platlets) have gone up and down. A couple of months ago my dr did a blood test and the red & white were in the normal range. Frist time in almost 5 years. But Platlets were down. I see my oncologist Monday so I will see if all 3 are ok.

If I had to go through treatment again I would prefer R-chop (with the prednisone) over Rice any day. The prednisone is hard but I feel that RICE was a lot harsher on my system. 

I started treatment with my dose of prednisone at 100mg for 5 days. They dropped my dose to 60mg on the second round, which helped, but I still just hated how it made me feel. I called it the devil drug. To this day, my greatest fear of doing chemo again is having to do the prednisone. My doctor said it is a very important part of treatment because it decreses swelling of the organs and helps with not getting infections. I hope you did ok with the prednisone and I will of course take it again if I have to, but knock on wood that doesn't happen. Love...Sue

Follicular NHL-stage3-grade 2-type A-diagnosed June 2010

Almost70now said:

Prednisone

I started treatment with my dose of prednisone at 100mg for 5 days. They dropped my dose to 60mg on the second round, which helped, but I still just hated how it made me feel. I called it the devil drug. To this day, my greatest fear of doing chemo again is having to do the prednisone. My doctor said it is a very important part of treatment because it decreses swelling of the organs and helps with not getting infections. I hope you did ok with the prednisone and I will of course take it again if I have to, but knock on wood that doesn't happen. Love...Sue

Follicular NHL-stage3-grade 2-type A-diagnosed June 2010

Sue,  I never had Prerdnisone with chemo, having done R-ABVD instead.  But a few years ago I got severe gout (my first episode with it ever), and the doc gave me Prednisone to 'help with the swelling.'  I took it for three days, without sleeping much. After the three days I had gained 7 pounds and felt like I was about to die.  I called the doctor and told him I was not going to take any more, regardless of the gout.

Despite two cancers and two months in the hospital for massive trauma, Pred was likely my worst drug experience ever.    Likely not everyone has as miserable a time with it as I did during my brief encounter, and I know that for cancer, Pred supposidely has not just palliative properties, but actually kills some cancer cells (i.e., can be in-effect cytotoxic itself).   

Trivia:  Adriamycin ('Rubex') is also nicknamed 'the Red Devil.'    Adriamycin is in CHOP, ABVD, EPOCH, TAC (for breast cancer), and many, many other combos.

Maybe the number of people being diagnosed with some form of lymphoma is been going down.  

Or maybe not. Like you said there are a lot of social media options and some are there to support cancer paitients.