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lindary's picture
lindary
Posts: 664
Joined: Mar 2015

It has been awhile since I have been on the forum. I see a lot of new names and some of the regulars too. It is almost 4 years since I was declared to be NED. I will see my oncologist in Oct. If all is ok she will have come in once a year going forward. I do have some health issues but they are more from age than fall out from the treaments. I have kind of decided that I will retire from working in about a year. The idea of not going to a job is a little scary. Cancer changed my life but retirement is a whole different thing. Part time work may be in my future. 

At work we have had a few people, or their family member, diagnosed with a cancer in the last year. My boss (breast cancer survivor) & I have become contact people to help them especially in those first few weeks. One of the first things I do is tell them about the ACS discussion boards. I believe that no matter how great the Drs and family are they can't relate like someone who has been there. 

I too have been excite to read about some of the new possible drugs for Lymphoma. Even my oncologist is amazed with teh research. I know that having Follicular Lymphoma it could come back any day or never. It is great to know there could me new ways to fight it if it does. Now to catch up on some posts.

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

Nice to hear from you Linda! You along with many, many others on this forum helped me through the hard times.  Several are still on here with their words of encouragement and their wealth of knowledge. I’m 2 3/4 years in remission from my DLBCL and stem cell transplant  and just graduated to 6 month scans! I follow the new treatments all the time and just love the research that continues. I did retire, enjoy volunteering at the local botanical gardens ( it was hard for me when I couldnt work in my own garden going through treatment) and will soon be watching my new grandson one or two days a week. I worry everyday about a relapse, but just typing this makes me realize that life is good!!

Sharon 

lindary's picture
lindary
Posts: 664
Joined: Mar 2015

Grandkids help too. Our son has 4 kids and we see them once or twice a month. Depending on what is going on. Having them around just livens up the day. In Dec our oldest daughter will be having her first child. As time goes by and life happens I think less about a relapse. I don't know about you but when I was told we would go to a 6 month schedule I thought it was too soon. It's like leaving home for the first time.  LOL.

 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3328
Joined: May 2012

Great hearing from you, Linda.  CSN had a data loss some time ago, and ALL posts from that time were lost. I suspect that is why your pic is now gone....

I go ten years clean of indolent lymphoma this month (NLPHL, basically the HL version of NHL follicular).   I can relate to all  you wrote above.  The best to you, and please stay in touch,

 

lindary's picture
lindary
Posts: 664
Joined: Mar 2015

When I signed in the other day is when I first realized how long it had been since I was last on. The year has been very hectic and looking back there have been a number of things I enjoy but haven't done for a long time. The last 2 weeks I have been working on getting back to those things. The issues that made thing hectic are starting to be settled. 

I also need to get a picture up there. My hair has gotten longer but that is about it. Never did have a curl after the chemo. It just prefers to be straight.

po18guy
Posts: 1011
Joined: Nov 2011

We knew you were out there - the only question was how you were doing. Now we know.

Life is indeed good.

lindary's picture
lindary
Posts: 664
Joined: Mar 2015

I can't believe that after my Oct appt with my oncologist I will be seeing her just once a year. It will also mark 4 years since my last chemo. I do find it interesting that sometimes I have to go back to my journal to remember when certain things happened. It am so glad I am able to watch our son's 4 kids growing up. In Dec our daughter (#2 kid) is going to have a little girl so that will be grandchild #5. She got engaged earlier this year and the wedding will be next year. I am so glad I didn't miss all of this. 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3328
Joined: May 2012

One interesting thing that I learned from my Hematologist/Oncologist (five Board Certifications) during my first few years after ending treatments is that "Survivership," such as in NIH "Five-year Survivorship Statistics" are measured from the date of diagnosis, and not from the date treatment ends.

Others may or may not have misunderstood this the way I initially did.

 

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

Glad you are getting good reports and it's great to hear from you. I'm not on as much, either. I guess that's a good thing-that cancer is no longer taking over our lives. Max I'm not sure I thought about survivorship stats as starting from diagnosis, either. Thanks for that information.  I also have a few friends and co workers who were recently diagnosed. I send them here as well. Even though I didn't do a lot of posting or answering questions, I certainly spent time searching, researching and reading. Hope your good reports continue!

lindary's picture
lindary
Posts: 664
Joined: Mar 2015

Max, me too. I had no idea that survivorship was based on diagnosis. That is interesting. 

illead's picture
illead
Posts: 847
Joined: Aug 2012

It's so good to hear from you and know you are doing well.  So glad you can relax and not have such a worry, it's always there but at least like you say, there are more positives with lymphoma now. Bill is still in remission.  You might know that in '17 he relapsed twice due to having to get off of Ibrutinib because of intolerance.  We went to MD Anderson 6 times that year to see an MCL specialist and he put him on revlimid and rituxan, so as I said he remains in remission.  Of course we are thankful for that.  Enjoy retirement and those grandkids.

Becky

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3328
Joined: May 2012

Delighted to hear that you and Bill are well also, Becky.  Geeze...six trips from California to MD Anderson, I didn't know it ihad been that many. Expensive and tiring, I'm sure.  That, plus all the work you did on treatment research during the previous ten years or so:  you are literally a lifesaver.

I will add that I have said for years that my wife did more to get me well than I did, my wife and the doctors.  I believe this is frequently true of cancer patients.  My Lymphoma was absolutely harder on my wife than it was upon me.  May caregivers be blessed...

 

illead's picture
illead
Posts: 847
Joined: Aug 2012

Actually I think I misspoke, now that I am counting again, I believe the visits started in April and ended in Dec., 5 in all every 2 months, yes it was a wild ride but of course worth it.  We had it down pretty pat Wink.  Thanks for the kudos, I have no doubt you and Bill would have been us wive's rocks too, it's just what most spouses do.  Bill says the same thing about it being harder on us, for better or worse hey?

Your friend,

Becky

lindary's picture
lindary
Posts: 664
Joined: Mar 2015

When it comes to meals my husband and I are total opposites. He lives to eat and I eat to live. So in additional to not being focused on food I also had the sides affects of chemo with no appetite and no taste buds. Every time he made a meal or snack I wanted to say no but I knew I needed to eat. At least a little bit. It was hard to get him to stop that pattern once I was in remission. Left to my own I know I wouldn't have taken in enough food. 

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

Hi Linda,

  I agree...having our grandchildren around keeps us focused on all the good we have in our life. I just had a new great grandson born in March, and now this week my youngest son and his wife told us they are expecting again! I too research all the new treatments and am hopeful with what I read. So far I haven't had to try a new treatment. I relapsed in 2014 in my right eye and did 2 rounds of radiation and then relapsed again in 2016 and did one month of Rituxan..(once weekly) and it did the job in knocking back the tumor. Riuxan has worked very well for me so far. My original chemo regimen in 2010 was CVP-R with a follow up of 2 years Rituxan maintenance. Currently I have blood work done every 3 months, doctor consult and check up every 6 months and a yearly scan. Hopefully if this year stays uneventful I can get my clinic visits up to just once a year and blood draws every 6 months. I plan to be busy with my new grandbabies and don't have time for cancer. Smile Take care, and I wish you well with working part time if you decide to do so. I also direct cancer patients to the ACS discussion board, it truely helps...it sure did me.   Sue

FNHL-stage3-typeA-grade2-diagnosed June 2010-in remission. 

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