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The old gray mare ...,

ShadyGuy
Posts: 535
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: 839
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: 695
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: 535
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: 132
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: 695
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: 25
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: 67
Joined: Feb 2018

I love this group and the stories are inspiring.  

Evarista's picture
Evarista
Posts: 292
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: 227
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: 63
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: 35
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: 695
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: 35
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: 3491
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: 35
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: 695
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: 35
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: 18
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: 860
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: 695
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: 860
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

Bat4747
Posts: 1
Joined: Nov 2019

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.

twowheels's picture
twowheels
Posts: 18
Joined: Jun 2017

All the best to you Bat. 

PBL
Posts: 227
Joined: Jul 2016

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.

lindary's picture
lindary
Posts: 695
Joined: Mar 2015

Sorry to hear about your diagnosis but the addtional news you got is fantastic.  As PBL said it seems that advancements in the treatment of the blood cancers seems to be coming at us frequently.  Good luck. 

ShadyGuy
Posts: 535
Joined: Jan 2017

.... happy holidays and a healthy and prosperous new year!

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3491
Joined: May 2012

The same to you Shady !    May your 2020 be full of wonderful, good news -- however improbable that may seem at the moment.

 

max

po18guy
Posts: 1082
Joined: Nov 2011

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...

 

ShadyGuy
Posts: 535
Joined: Jan 2017

this forum a few years ago when it was active. I also benefitted from it. Your's, Max, Evarista, Sue, Ilead and Rocquie posts were especially thoughtful and informative. There are several others. Evarista is incredibly articulate and precise, Your comments are based on experience. Max does thorough research. Rocquie is emotional but very caring and thoughtful - the kind who makes a good friend. I remember that this is a forum and our names are just characters, not real people. We do not have to agree on everything. Take it at face value. Again happy holidays.

Evarista's picture
Evarista
Posts: 292
Joined: May 2017

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

illead's picture
illead
Posts: 860
Joined: Aug 2012

What a shock, where was the announcement?  That is just odd to me that there is no info and "too bad, so sad".  A lot of us made each other special and we have shared feelings and experiences that few of our own families and friends even know.  I feel really bad about it.

Becky

Simon24
Posts: 45
Joined: Oct 2015

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

ShadyGuy
Posts: 535
Joined: Jan 2017

You make happy!

illead's picture
illead
Posts: 860
Joined: Aug 2012

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

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3491
Joined: May 2012

I have written here several times that I regard my principal caregiver's -- my wife's-- experience with my lymphoma to have been worse than my own.  

True, she did not have neuropathy, or flu-like syndrome, or lose her sense of taste, or all of her hair, and turn grey-colored, but her experience was worse than mine.  I became completely incapacitated, and she had to do everything: run the house, take care of middle-school kids, be my driver, and a thousand other things.  "All" I had to do was lie there and "take it":  she had to be up and about doing the heavy lifting.  And all without complaining in any way.   At the Prostate Board, it is even more pronounced:  a very high percentage of the screen names are the wives, the caregivers.

I do not mean to understate the very real suffering that many Lymphoma patients themselves endure.  The suffering can be profound, and includes for some even the ultimate sacrifice, death.     But he appreciation and importance due to caregivers can never be calculated,

Simon24
Posts: 45
Joined: Oct 2015

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  

lindary's picture
lindary
Posts: 695
Joined: Mar 2015

So the notice about a forum shutting down, is it this forum or the The Cancer Forums?  Or are they one and the same?

Evarista's picture
Evarista
Posts: 292
Joined: May 2017

Here: https://www.cancerforums.net  When I first saw Po's note on this, I went over and looked, mostly because I was unaware of that forum.  There was a message at the top of the page about the shutdown, but I do not see it there anymore.  So maybe that one will be staying open?

Rexmax
Posts: 50
Joined: Apr 2017

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

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3491
Joined: May 2012

I have the same question: was the notice in reference to CSN ?  I doubt it myself.    

 

ShadyGuy
Posts: 535
Joined: Jan 2017

My reading of PO's post was that it was not this forum but a dfferent one.

PBL
Posts: 227
Joined: Jul 2016

Hello All,

No worries - Po was reporting on the shutting down of a completely distinct forum, unrelated to this CSN forum. The Cancer Forums - as it was called - was a long-standing forum with a core of well-informed members. It is ceasing all activity at year end, which came as a shock to many, as it was rather active and, no doubt, a great support to all who visited it.

 

Best wishes to all for a very Happy and Healthy New Year.

PBL

CSN_Bill's picture
CSN_Bill
Posts: 23
Joined: Sep 2016

Hi all, 

Just to clear up any questions, PBL and ShadyGuy are correct. Po's message is referring only to the site, www.cancerforums.net. This CSN site is not scheduled to be shut-down at all.

Thank you for your concerns, 

Bill
CSN Support Team 

illead's picture
illead
Posts: 860
Joined: Aug 2012

We appreciates you putting our worries at ease.

Becky

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