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The old gray mare ...,

ShadyGuy
Posts: 407
Joined: Jan 2017

She ain't what she used to be ..... and neither is this forum. What happened? Is everyone suddenly hypersensitive?

Rocquie's picture
Rocquie
Posts: 836
Joined: Mar 2013

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

 

 

 

lindary's picture
lindary
Posts: 657
Joined: Mar 2015

I've noticed that too.

On the positive side - maybe everyone is so busy living their life they haven't had time to tell the group about all of the wonderful things they have been doing because theri cancer is under control/in remission.

ShadyGuy
Posts: 407
Joined: Jan 2017

I guess things just change. Change is the only constant. Also some of the long time posters may have passed away. This is a fatal disease after all. That said, rapid advances are being made in lymphoma treatment. A board like this could be a good source of info. Now, if we could only find a cure for aging! Eat, drink, be merry !

Sal0101's picture
Sal0101
Posts: 125
Joined: Sep 2015

I still jump on and read the threads every couple of days!  I don't often respond because I don't feel that I have the knowledge about the different drugs and types of lymphoma as others do.  I do remember being so excited when I went into remission the first time, the NED. We celebrated!!  I relapsed 5 months later which was a huge let down.   I don't want  others going through the battle to become discouraged, or think in anyway they would respond the way I did. I just passed the 3 year mark from my stem cell transplant and didn't celebrate. Yes, I thought about it, I think about it all the time, but I don't celebrate.  I guess I'm still a bit superstitious!! I do have to admit though, it's nice to hear from familiar people on this forum that helped me immensely from day one! 

Sharon

lindary's picture
lindary
Posts: 657
Joined: Mar 2015

Your story about your relapse reminded me of a cousin. She had been diagnosed with breast cancer and survived.  It came back around the 3 year mark. She did not want her family to tell anyone. No one knew until her family contacted the realtives to say she had died. From what her daughter told me her mom just went to her bed and stayed there. We were all so sad when we were told this. That was long berfore internet, FB, blogs, etc.  I feel the internet helps us keep in touch and to find support. And it also has helped the medical community to find other ways to help their paitients. 

Scubamom for two's picture
Scubamom for two
Posts: 19
Joined: Apr 2018

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!    

Bill1958's picture
Bill1958
Posts: 62
Joined: Feb 2018

I love this group and the stories are inspiring.  

Evarista
Posts: 265
Joined: May 2017

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

PBL
Posts: 184
Joined: Jul 2016

I, too, check in on the forum two or three times a week. Always willing to offer help if I can... Not much action, most of the time.

Always glad to see the "old timers" keep on keepin' on, though. 

Like Evarista, I do find some aspects bothersome - no personal history, difficulties in retrieving old posts or threads, and the lack of chronological order of posts within a thread - which can make it hard to follow.

But in my opinion the main cause of the current state of the forum may be that it seems to be dormant. Anyone seeking answers and taking a quick look at recent activity will probably figure that they're not likely to be found here... Pity! Let us hope this is only a phase and that we will see spring again.

Kind regards to all.

PBL

PeprmntPat55's picture
PeprmntPat55
Posts: 60
Joined: Aug 2016

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

 

Almost70now's picture
Almost70now
Posts: 29
Joined: May 2019

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. 

lindary's picture
lindary
Posts: 657
Joined: Mar 2015

I joined 2015 after being diagnosed with Follicular lymphoma, stage 4. I came to this group looking for info on th Prednisone part of the treatment. 

 

I like your name. I am with you on that. I will be 70 next year.

Almost70now's picture
Almost70now
Posts: 29
Joined: May 2019

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

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3307
Joined: May 2012

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.

Almost70now's picture
Almost70now
Posts: 29
Joined: May 2019

Hi Max,

   I know some people who can handle it fine, but not me, even in really small doses. The weight gain is crazy with prednisone! My friend took it for a month when she had a lung infection and gained 18 pounds!!! I also got what they call "moon face"...that's where your face gets all puffy and red. I didn't gain much weight because I was always so anxious and nervous that my stomach felt upset which made me not eat much. Horrid drug! Tongue Out I also have another friend who did the same chemo as you and she called it "the Red Devil". It's a pretty harsh chemo. Cry  Sue

FNHL-stage3-grade 2-type A-diagnosed June 2010

 

lindary's picture
lindary
Posts: 657
Joined: Mar 2015

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. 

Almost70now's picture
Almost70now
Posts: 29
Joined: May 2019

Hi Lindary,

  I am stage 3(no bone involement) so my cancer doctor chose CVP-R for my treatment. Since then, (2010) I have not had to do any more harsh chemo's, just Rituxan and radiation to knock back some new tumors. I developed a nasty red patch in my right eye in 2014 and after getting a biopsy it was determined my FNHL had returned. I thought it such a strange place for it to return in, but after 2 rounds of radiation it went away. I get check ups on that eye every 6 months and all is good except for a little blurred vision. In 2016 I found a large lump by my elbow and also a smaller lump on the inside of my right cheek...again, strange places for lumps to appear. Had biopsies on both and once again found FNHL. I did one month of weekly Rituxan and once again knocked the tumors back. I find it unsettling that these tumors keep popping up every few years but am very grateful to have  Rituxan working for me in  knocing them back. I tell myself it's just little set backs but I really would like to go longer than 2 years before finding a lump or new location where tumors pop up needing more treatment. Right now is the longest I've gone with no new tumors, but am still doing 6 month blood draws and check ups and yearly scans. The 23rd I go for another check up and blood draw and then January will have my yearly scan. Still get scaniety but I think thats normal with most of us. All we can do is hang in there and hope for the best. Best wishes to you, Sue

FNHL- stage3-grade 2-type A-diagnosed June 2010.

twowheels's picture
twowheels
Posts: 15
Joined: Jun 2017

I visit but only post if I have personal experience or observation that ADDS to the thread topic (though in this case, just to say, I was here :-)

illead's picture
illead
Posts: 844
Joined: Aug 2012

We just got back from 2 weeks vacation and a week of catch up.  We went to see our son and daughter-in-law in NY and from there we all went to NH to see the Fall colors. We rented a house on a lake.  Did we catch the colors at their peak? Absolutely!  They were amazing. We drove the Kancamagus Hwy and it was truly breathtaking.  Yes, we are all getting older I'm 70 and Bill will be 71 next month.  I feel like a young person in an old person's body Undecided.  Yes, I miss the old days too, it was so lively, light-heated at times and mostly very caring and comforting.  I agree that for some of us the wind was taken out of our sails when John was kicked out. Yes, he was very supportive.  I remember that when Bill relapsed the first time and was sent to Stanford, John waited up until past midnite his time to get word from us, but I had no way to email him.  I do hear from him from time to time, in fact just did and owe him when I finish this.  Remember that sweet picture of his granddaughter in the blue dress that shows up periodically in an old thread?  He sent me an updated picture.  She is now obviously a teenager but still just as sweet looking.  Besides that I also agree that we are just getting older and slower.  Also I notice that most newbies don't stick with us.  In the old days we didn't have the degree of social media as we do now, so maybe newer ones just want an answer and then back to their instagrams, facetime, snapchat etc. I don't know.  I'm thankful that there is at least a forum and I appreciate all who are on it but also understand that we all have a life and that means a lot to all of us.

Bill and Becky

lindary's picture
lindary
Posts: 657
Joined: Mar 2015

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. 

MChantal's picture
MChantal
Posts: 108
Joined: Apr 2013

My dearest CSN family,

I too remember the day(s) this forum saved me from the fear, anxiety, grief yet, also celebrated with me in moments of hopefulness, relief and triumph. This community we had will never be forgotten - it holds such a deep spot in my heart that I will never be able to express how grateful I was at 23 years old to find on that one terrible day. 
Time does just seem to fly by before you know it - Kyle will be 5 years remission this upcoming March. 🎉 We are living the new "norm" of cancer life yet, living it to our fullest. 

Sending all of our love to everyone and all the new individuals that have found this forum in any part of their journey. I hope this place brings you the peace and comfort as it did for me.

Best,

Michelle and Kyle Schneider

 

illead's picture
illead
Posts: 844
Joined: Aug 2012

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

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