Was last on here in 2014, Hi to all the old timers and the new!

cathyp

Luckily I received an email notification today that I had a message waiting here.  I had several as I haven't been posting as I transitioned to closed FaceBook groups for HD repercussions, late effects and Breast Cancer after HL and others. I thought many times I need to update everyone on my exit but never did sadly. It was wonderful reconnecting to posters from over 5 years ago!  I probably should change my picture!  Hope this finds all of you doing your best.  I'm 29 years post recurring HD and 11 post Invasive BC.

po18guy

Perseverance...

Pays off! So good to hear from you, and your story is a real inspiration for others who are at the start of their journey and may be wondering or having doubts. I hope that you can still smile as you did in your "older/younger" pic! 

cathyp

po18guy said:

Perseverance...

Pays off! So good to hear from you, and your story is a real inspiration for others who are at the start of their journey and may be wondering or having doubts. I hope that you can still smile as you did in your "older/younger" pic! 

I recognize

your handle po18guy!!  Still smiling keeping ahead of these late effects.  Hope you’re smiling too!!

Max Former Hodgkins Stage 3

cathyp said:

I recognize

your handle po18guy!!  Still smiling keeping ahead of these late effects.  Hope you’re smiling too!!

Delighted !

I'm delighted to see you post again, cathy.  For the folks who don't know you yet, you were the go-to expert regarding long-term side effects, and how to avoid them or diminish them. I recall that you did substantial research into the matter.  And also a person who survived two unrelated cancers (rather than two forms of lymphoma).  I also think you are an RN ?  And from the Virginia area ?  (I'm pulling all of this from long-rusty memory banks.)

illead is still here (Bill and Becky) Bill is doing pretty well with his MCL.  Almost60 (Sue) moved to Oregon with an ocular recurrance, but we lost contact with her (reason unknown), to the dismay of many here.  Dixiegirl died a few years ago, after two or three relapses, which was devastating. I believe she had a battle of around 15 years or more.  She was a hero and inspiration to many dozens here.  Jimwins hasn't written in many years.  Last post from him, he was doing very well.   I too had a secondary cancer (prostate) discovered in 2014, but overall am in good health.  Pulmonologist discovered a few years ago that I have lung fibrosis of about 25-30% of both lungs, but for the last year or so I've breathed very well, with no more cough or shortness of breath. He could not positively blame it on the Bleo, so we are not certain regarding that question.  I also had a lung nodule followed two years, but the pulmonologist told me that protocol says to declare it very likely benign,

max

 

cathyp

Max Former Hodgkins Stage 3 said:

Delighted !

I'm delighted to see you post again, cathy.  For the folks who don't know you yet, you were the go-to expert regarding long-term side effects, and how to avoid them or diminish them. I recall that you did substantial research into the matter.  And also a person who survived two unrelated cancers (rather than two forms of lymphoma).  I also think you are an RN ?  And from the Virginia area ?  (I'm pulling all of this from long-rusty memory banks.)

illead is still here (Bill and Becky) Bill is doing pretty well with his MCL.  Almost60 (Sue) moved to Oregon with an ocular recurrance, but we lost contact with her (reason unknown), to the dismay of many here.  Dixiegirl died a few years ago, after two or three relapses, which was devastating. I believe she had a battle of around 15 years or more.  She was a hero and inspiration to many dozens here.  Jimwins hasn't written in many years.  Last post from him, he was doing very well.   I too had a secondary cancer (prostate) discovered in 2014, but overall am in good health.  Pulmonologist discovered a few years ago that I have lung fibrosis of about 25-30% of both lungs, but for the last year or so I've breathed very well, with no more cough or shortness of breath. He could not positively blame it on the Bleo, so we are not certain regarding that question.  I also had a lung nodule followed two years, but the pulmonologist told me that protocol says to declare it very likely benign,

max

 

Wow, I’m thrilled to hear from you

thanks for helping me to feeling like it was just yesterday that I posted here!  Many memories are flooding back with your help even though I blame much on chemo brain and age!  So I’m from PA and I only try to play an RN on the internet!!  No medical background, I was in aerospace and have worked with orthopaefic surgeons for 13 years now part time.  I have gone to MSKCC late effect clinic from about 2011 so we try to keep ahead or knock things down!  My latest is severe GERD that I didn’t know could be so horrid. 

Im saddened to hear about DixieGirl and her struggles to the end.

Sorry to hear about your P CA but I’m relieved to hear you are doing well. Did you have radiation Initially?  Pulmonary fibrosis could be blamed on that and or the bleo. Regardless it’s reassuring to hear your breathing is better and the nodule  is stable. 

Thank you for reaching out and responding with such kind words. I’ll stick around. Have been involved with a great non profit, our leader does most of the work. Our website is Hodgkinsinternational.org

 

Thsnks again Max!!!

cathyp

illead said:

You made our day

It's a good thing you kept your old picture, I probably would not have remembered, but with your pic, I immediately did.  We are not getting any younger and neither are our brains lol.  As Max said, Bill is still doing well.  He has relapsed 3 times with MCL and we went to one of the top experts at MDAnderson in '17.  Bill has been on his protocol for over a year now and remains in remission.  His only problem for now is dealing with side effects, but it is better than the alternatives.  We sure miss the old gang and the fun we had sometimes when nothing too serious was going on. Roquie is also here, she will probably post also.  There are a few of the older gang that still post from time to time also.  We have a nice group now though and glad for that.  It is wonderful to hear that you are doing so well and so far and hopefully permanently have won so many ominous battles. Thank you so much for remembering us, it is a very happy surprise.  You know we would love to keep hearing from you when you are up to it.  I have never changed our picture either, it feels nice being young again

Becky 

It’s Bill and Becky!! Can’t keep from smiling

thank  you for taking the time to respond!  Im thriiled to hear from you. Gosh Bill has been through the ringer, I’m so sorry.  Are his side effects temporary or another new normal?  If we all can keep keeping on something new is always being worked on to get to better outcomes.  My cousins daughter worked on immunotherapy for HL that has helped many. I’ve heard so many good things about MD Anderson, glad you found this expert. Do you need to travel far?

I remember Roquie!!  I’ll keep checking in from time to time. Busy now with Pilates based physical therapy and myofascial release to stay ahead of radiation fibrosis. Seeing my cardiac oncologist and GI doc next month.  A few months later my endocronologist for senile osteoporosis in July. All thanks to the treatments that has kept me here 29 years more!  My girls are almost 26 and 23, so much life among the challenges. 

 Well take care you two!!

illead

You made our day

It's a good thing you kept your old picture, I probably would not have remembered, but with your pic, I immediately did.  We are not getting any younger and neither are our brains lol.  As Max said, Bill is still doing well.  He has relapsed 3 times with MCL and we went to one of the top experts at MDAnderson in '17.  Bill has been on his protocol for over a year now and remains in remission.  His only problem for now is dealing with side effects, but it is better than the alternatives.  We sure miss the old gang and the fun we had sometimes when nothing too serious was going on. Roquie is also here, she will probably post also.  There are a few of the older gang that still post from time to time also.  We have a nice group now though and glad for that.  It is wonderful to hear that you are doing so well and so far and hopefully permanently have won so many ominous battles. Thank you so much for remembering us, it is a very happy surprise.  You know we would love to keep hearing from you when you are up to it.  I have never changed our picture either, it feels nice being young again

Becky 

Max Former Hodgkins Stage 3

cathyp said:

Wow, I’m thrilled to hear from you

thanks for helping me to feeling like it was just yesterday that I posted here!  Many memories are flooding back with your help even though I blame much on chemo brain and age!  So I’m from PA and I only try to play an RN on the internet!!  No medical background, I was in aerospace and have worked with orthopaefic surgeons for 13 years now part time.  I have gone to MSKCC late effect clinic from about 2011 so we try to keep ahead or knock things down!  My latest is severe GERD that I didn’t know could be so horrid. 

Im saddened to hear about DixieGirl and her struggles to the end.

Sorry to hear about your P CA but I’m relieved to hear you are doing well. Did you have radiation Initially?  Pulmonary fibrosis could be blamed on that and or the bleo. Regardless it’s reassuring to hear your breathing is better and the nodule  is stable. 

Thank you for reaching out and responding with such kind words. I’ll stick around. Have been involved with a great non profit, our leader does most of the work. Our website is Hodgkinsinternational.org

 

Thsnks again Max!!!

GERD

cathy,

I'm gonna screenshot your relpy, and magnet it to the fridge !

I have never received therapeudic radiation, for either cancer.  You mentioned bad GERD. After my wreck in 1986, it became horrible for me. I had an upper GI at the VA hospital, and the tech said immediately as the test began, "Damn ! You slosh around !" It was determined then, and since, that I have virtually no functioning hiatal spincter; unclear if the chest trauma destroyed it or not, but my esophagus is not tied to the diaphragm, and at times people around me (and I myself) can hear the escophagus sliding in and out of the diaphragm.  Sort of a grunting noise, at the rhythm of a see-saw (linked to breating).  I was at my GP's office one day when it happened, and asked him "What is that ?"  He exclaimed, "Hell if I know !", and sent me on my way.  (I have a tradition of having crusty, outspoken medical providers; perhaps someting about me brings out the earthy responses).  It was only a few years ago that my general surgeon told me what it is, following a full upper GI and stretch of the esophagus. He said he saw all of this, and recommended that we not attemp to re-attach it surgically, saying it would be tricky with poor liklihood of success.

I mention that in detail because also, just about 4 years ago, my pulmonologist said that my aforementioned fibrosis was most likely caused by....GERD.  I had never heard of such a thing, but he said it is common.  I had had a severe, continuous cough for years, and he said that was the GERD.  Factoid:  He also added that if you cough due to a "tickle in the throat," it is due to reflux. Always. He is a board certified pulmonologist as well as board certified in critical care.    GERD is serious disease, and can even kill.

The doctor did not wholly dismiss that Bleomycin may have had a role in the fibrosis, but said his money would go on the GERD, given the severity of what I have.  Mine is treated via high-dose Nexium.  

max

cathyp

Max Former Hodgkins Stage 3 said:

GERD

cathy,

I'm gonna screenshot your relpy, and magnet it to the fridge !

I have never received therapeudic radiation, for either cancer.  You mentioned bad GERD. After my wreck in 1986, it became horrible for me. I had an upper GI at the VA hospital, and the tech said immediately as the test began, "Damn ! You slosh around !" It was determined then, and since, that I have virtually no functioning hiatal spincter; unclear if the chest trauma destroyed it or not, but my esophagus is not tied to the diaphragm, and at times people around me (and I myself) can hear the escophagus sliding in and out of the diaphragm.  Sort of a grunting noise, at the rhythm of a see-saw (linked to breating).  I was at my GP's office one day when it happened, and asked him "What is that ?"  He exclaimed, "Hell if I know !", and sent me on my way.  (I have a tradition of having crusty, outspoken medical providers; perhaps someting about me brings out the earthy responses).  It was only a few years ago that my general surgeon told me what it is, following a full upper GI and stretch of the esophagus. He said he saw all of this, and recommended that we not attemp to re-attach it surgically, saying it would be tricky with poor liklihood of success.

I mention that in detail because also, just about 4 years ago, my pulmonologist said that my aforementioned fibrosis was most likely caused by....GERD.  I had never heard of such a thing, but he said it is common.  I had had a severe, continuous cough for years, and he said that was the GERD.  Factoid:  He also added that if you cough due to a "tickle in the throat," it is due to reflux. Always. He is a board certified pulmonologist as well as board certified in critical care.    GERD is serious disease, and can even kill.

The doctor did not wholly dismiss that Bleomycin may have had a role in the fibrosis, but said his money would go on the GERD, given the severity of what I have.  Mine is treated via high-dose Nexium.  

max

GERD is nasty!!

i can see how Gerd could cause lung problems. I hope you never have had aspiration pneumonia from the GERD. Wish there was something they could do to correct the sphincter. GERD is a scary thing!

illead

Thank you for your kind words

You have been through it too and for much longer......my goodness.  Bill's side effects are most likely the new normal.  Side effects actually caused his 2 relapses in '17  because he had to quit the target drug Ibrutinib that kept him in remission from his first relapse in '14. It did great for 3 years but it ended up causing A-fib, severe stomach pains, fatigue and balance issues.  He had ablation surgery though so no more A-fib.  Now he's on Revlimid (pill) and every 2 mos. rituxan.  The rit has given him chronic sinusitis, and he also has stomach pain and fatigue, but not like before and he is able to push through .  Dr Wang at MDA wants him to have Car-T cell therapy when he relapses again but that may be off the table with his age.  We saw Dr. Wang every 2 months during '17 so it was a trip from Sacramento to Houston.  Now that he is in remission though, his onc here confers with Dr. Wang.  Of course whenever he does relapse we will go back. Like you say though, new things are being found all the time.  I just read an article that Bill and I have both thought.  It stated that one of the reasons so much research is going on with MCL is because so far it is so rare and incurable, if they can find a cure, it may pave the way for not only other lymphomas (which we thought) but other cancers too.  So far that has already happened with some of the progress made.  So we just live life as positive as we can and go on,  just like you, with 2 daughters that you were able to have and watch grow.  Our two children were already grown when Bill was diagnosed but we had been married for 41 years and what I feared missing so much was our 50th anniversary.  We just celebrated our 49th last week!

You take care too, and we will, along with you, keep on keeping on,

Bill and Becky

onlytoday

Another old-timer chimes in...

Hi!  

So nice to get updates on some of the familiar names from 2010 or so.  I had a relapse in 2012, had chemo again and have been in a fairly stable remission ever since.  It waxes and wanes... as some do.  But for Stage IV Marginal Zone, I like the way this is going. I just graduated to 9 month checkups instead of every 6 months.

Hope you all continue to look forward and keep smiling.  

#Iwantacureforallofit

BTW:  Terrible Gerd. FYI Started before diagnosis of NHL.  

Max Former Hodgkins Stage 3

onlytoday said:

Another old-timer chimes in...

Hi!  

So nice to get updates on some of the familiar names from 2010 or so.  I had a relapse in 2012, had chemo again and have been in a fairly stable remission ever since.  It waxes and wanes... as some do.  But for Stage IV Marginal Zone, I like the way this is going. I just graduated to 9 month checkups instead of every 6 months.

Hope you all continue to look forward and keep smiling.  

#Iwantacureforallofit

BTW:  Terrible Gerd. FYI Started before diagnosis of NHL.  

Serious !

Only,

When we were catching up with Cathy, and mentioning the old crowd, I was about to mention "a regular; her photo was of her in a kayak.  I can't remember her screen name, but I believe she was from California."

Delighted to see you writing again, and to hear that you are well,

max

illead

Could it be.........

...............Carol?

Wow, I think of you all the time.  Like Max, I will never forget that picture.  It is so nice to hear from you, really really.  So sorry about your relapse but it sounds like you are doing very well now and getting on with life.  Thank you so much for catching up, we really appreciate it.  You were always so supportive when Bill relapsed the first time, I have not forgotten that.  We hope to hear from you again.  Just a wonderful surprise.

Thanks so much,

Becky

illead

....OR.....

....Donna....It's either Neil Sedaka or Richie Valens