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11 ABVD down and 1 to go.

Bill_NC's picture
Bill_NC
Posts: 108
Joined: Jan 2013

I remember 5 months ago I wrote a post saying “One ABVD down and 11 to go.”, now 11 down and 1 to go. I really didn’t have many posts but surely I was checking and following posts 1-3 times a week.

As I am excited for getting close to be done with chemo, and looking for it to get married sometime within the next 6 months from my collage girlfriend 20 years ago, I had reunited with last year (we live in different states).

 

Now I am kind feel why should she commit to someone like me. I am not trying to put myself down, I am just worry about my future wife have to live with me nervously on every 4 months checkup bases that cancer may return.

Please understand my point of view I am not trying to be pessimistic. I am just trying to live the reality. In matter of fact I was so optimistic on my last visit with the oncologist when he told me that I may have 80% of progression free survival from the initial treatment. UNTIL I read this article about NLPHL today at the American Society of Hematology site. (https://ash.confex.com/ash/2012/webprogram/Paper50242.html)

 

From the article Conclusion:

 Conclusion: With long-term follow-up, almost half of the patients with NLPHL develop a lymphoma relapse and large proportion experience transformation to aggressive lymphoma. Splenic involvement is a strong risk factor for eventual development of aggressive lymphoma providing a rationale for CHOP +/- rituximab based chemotherapy.  Although the OS of NLPHL is comparable to cHL, there is an inherent increased risk of transformation and late relapses, highlighting a distinct disease behavior and the need for repeat biopsy at relapse as well as long-term surveillance. 

 

Please note I am NOT trying to put anyone down. I am just trying to discuss the metter with you all, and see what you think since you all been here for me from day one.

Thanks

jimwins's picture
jimwins
Posts: 2002
Joined: Aug 2011

Woohoo on the chemo - almost done!  I know you are glad. 

Congratulations on your upcoming marriage.  I understand where you are coming from regarding your concerns and you and the "Mrs. Bill to be" need to discuss those things.  However, you or she could be hit by a meteor tomorrow so nothing is ever guaranteed.  You will both worry together and anxiety will be your companion every time you have an upcoming scan - unfortunately.  I think it's wonderful you have connected with your girlfriend and wish you guys all the happiness and success in the world.  You deserve it Bill.  We can't let cancer or the fear in its aftermath defeat us (even in remission) :).

Rearding the "Conclusions" link:

1) Some of the patients were diagnosed as early as 1970 (doubt if they had same chemo/therapies as today - less was known and certainly less technology in those days). 

2) Looking at the graphs, 20 years seems to be where things change.  (A lot can happen in 20 years! Maybe a cure?)

3) Spleen involvement seems to be a major factor.

I think research is a good thing but too much of it can confuse and drive you crazy. Add to that we are not physicians much less statisticians.  This report was written to be presented to research and medical professionals and I'm sure makes a lot more sense to them :).  You might want to show it to your oncologist and get a better interpretation of it? 

I'm so happy to hear you are almost finished your treatments and the exciting news of marriage! 

Big bear hugs, Bill.  - Jim

 

 

 

 

illead's picture
illead
Posts: 501
Joined: Aug 2012

Hi Bill,

     I was so happy to read your great news, many congrats.  I totally agree with Jim, he gave you some very sage advice on your upcoming marriage and on the link.  First of all, more congrats on your marriage.  Like Jim said, anything could happen, cancer was in none of our vocabularies before it touched us, you know how quick that can happen.  So you need good communication and knowledge and let your love for each other make the decision.  Of course my Bill and I were married over 40 yrs. when he was diagnosed, but it's part of our committment to each other and knowing it before hand helps you to prepare.  Bill's Mantle Cell is one of the "bad" ones but today they are very optimistic about the advances they have made with it and give us nothing but very optimistic hope,  However, if you look it up on the internet, it still comes off as sounding very ominous.  So like Jim says those reports are from ones who had your lymphoma many years ago and were treated with different chemicals.  They know so much more today and are so much more advanced in their treatments.   So try hard to get on with your life and try not to worry so much.  You have done so well and you deserve some happiness......oh yeah and try to stay away from meteors! Becky

Shoopy
Posts: 210
Joined: Jul 2013

Hi Bill,

Congratulations on finishing your treatments. 

With all the ups and downs I've recently experienced, I find myself in 'bad places' all the time.  Honestly, I think it's OK to be in a bad place from time to time.  Just don't live there.  It's very real for you to worry about a relapse.  Let it happen.  For 10 minutes...the start focusing on the fact that others survive and don't relapse.  Ask yourself, "why not me?"

The internet is a blessing and a curse.  I completely agree with Jim's comments.  It seems like they are always coming up with new treatments for people with cancer.

Live in the moment, my friend.

Karl

allmost60's picture
allmost60
Posts: 3162
Joined: Jul 2010

Hi Bill,

 One treatment left..."YIPPEE"!!! It's such a good feeling when we get that close to ending treatment. I know it's scary when we read that this nasty stuff will come back, but until it does,or doesn't, we need to enjoy every day to the fullest. Marry your colege sweetheart and don't look back. Seriously...we just can't let cancer determine our happiness. As others have said...we none know from day to day if it's our last...only our creator knows. In the meantime we need to make every day count. My blessings and best wishes to you friend...go forward fearless!  Sue

(Follicular NHL-grd2-stg3-typA-Dx 6/10-age 62) In remission

Rocquie's picture
Rocquie
Posts: 478
Joined: Mar 2013

If I were in love with a man with lymphoma, his health would not change my mind about that love or my commitment to him. Love is love. I'm pretty sure my husband never regretted marrying me because I got sick with lymphoma. If anything, it has brought us closer. He has happily advocated for me and goes to appointments with me. He has always referred to the lymphoma as "ours".

I appreciate your concern for your fiance, but you can't make her decisions.

Congratulations on being almost finished with your chemo. I know that is a wonderful feeling. I wish you and your sweetheart all the best.

Rocquie

 

micah00
Posts: 13
Joined: May 2013

Congratulations on the last treatment it is great I just received my last today. All of this I would have to say has brought me and my wife closer together and we appreciate each other more. Not trying to make it sound like our marriage was on the rocks but God does things for a reason. Also maybe God feels your sweetheart needs this in her life to help her see something. Good luck with everything and keep praying.

micah00
Posts: 13
Joined: May 2013

Congratulations on the last treatment it is great I just received my last today. All of this I would have to say has brought me and my wife closer together and we appreciate each other more. Not trying to make it sound like our marriage was on the rocks but God does things for a reason. Also maybe God feels your sweetheart needs this in her life to help her see something. Good luck with everything and keep praying.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 1041
Joined: May 2012

Bill,

You haver run the course ! Good job !

As you recall, I had the same strain of HL as you, and the same treatment.  I have read dozens of professional studies, such as the one you submitted here.  They all vary somewhat; the numbers in this one, although it is indeed excellent, and from rock-solid sources, are by no means definitive, or of more substance than many others that are a bit more optimistic.

As Jim noted, this is an extremely long-term review, and many of the relapses are as many as 20 YEARS old, and even then, most are relatively easily put back into CR. 

ABVD was developed over a long period of time as a replacement for the combination used in earlier decades, known as MOPP.  ABVD specifically is used to reduce the liklihood of relapse by a more aggressive strain of lymphoma, or leukemia, which MOPP had  somewhat of a tendency to do, but even then, only many years after treatment, and I think the liklihood then was only around 15%, or less (I am depending on memory here, from studies I read years ago).  This means that even MOPP led to PERMANENT CR, with NO RELAPSE in over 70 % of patients (rewriting the relapse stats in a more positive manner).  My wife and I were discussing this very topic when we went for my post-treatment PET, which confirmed my CR.  I asked him point-blank:  If I had a relapse, what form would it be ? He answered, "The same thing you had before.  Morphinng into leukemia or something aggressive is much less likely, but possible."

Try to just be thankful for a while.  Find a way to relax.  Either a church, or yoga, or deep-woods camping, or something.  You cannot spend the rest of your life obsessing over every little piece of cancer news you come across.  Most likely (very likely, actually, even using the numbers you provided here) , you will NEVER relapse.  Use THOSE numbers !

As to your relationship, or getting married: No one here can advise you on that.  Take your time, talk it out in depth, and follow your hearts and your gut instincts.

Incessant worry is not helpful, and may actually be bad for your health.  None of us can completely forget our medical history, but it must move from the forefront of your every thought.

Wishing you happy thoughts and dreams,

max

.

 

 

girliefighter's picture
girliefighter
Posts: 206
Joined: Mar 2013

Bill,

I too have one left to go and can understand how it is hard to relax and enjoy the gift you have been given, because it is always in the back of your mind as to when it can "strike" again or if it even will.

Max and Jim and the others have provided great information and support

As far as the Marriage...Congratulations...And you must know deep in your heart that your Cancer journey has made you who you have become and whom she loves unconditionally. I do however understand the feelings of how could someone love someone like me, that feels damaged by a disease. I am single and wonder who will ever Love me, someone who has scars on her neck and chest and one in her mind that will never go away. The best part of having Cancer and beating it, is being given a second chance..You have more strength than you probably ever thought pre- cancer that you had, you have grown so much throughout your journey. Having the gift of someone loving you unconditionally is the best thing in the world that one could have, your best friend and soon to be wife does just that for you. If she has chosen to reconnect with you and marry you for good times and bad you must have faith that is what she intends to do. I am sure she knows the good and bad will come and go, and without the bad you would never have good. So a little test every few months and some anxiety can be overcome with the LOVE AND SUPPORT of your soulmate. See there is a reason you two reconnected, it was meant to happen; just as we were meant to have these little journeys to help us grow and lead us to our next path.....HAVE FAITH

Carie

Bill_NC's picture
Bill_NC
Posts: 108
Joined: Jan 2013

Thank you ALL for your thoughts. I am grateful to know what you all thinking about the matter as you been in my shoes. I am writing as I just come back from my last treatment, I also like to say to MAX and Jim that I felt If you were there at the DR office with me. Because I discussed the matter with my oncologist and he said almost the same stuff you said.

I am going to stay a memeber on the site and keep you updated , and I may post a question here and there once and while. Speaking of question today I have new nurse and noticed that she gave me the ABVD treatment in this order BVAD compare to past 11 treatment where I took them in the order of ABVD, and when I asked her she said it does not make different.

But within my self I did not feel good about it. For of you who have ABVD does the order given makea a different. I wont be able to see my oncologist for another month to ask him, but if anyone have any info please reply.

Again thanks all for your support, You all my Friends I never met, love you all and wish you all the best.

Looking for it to get my hair back and stop my children calling me MR Clean :-)

 

Aaron's picture
Aaron
Posts: 237
Joined: Jun 2012

As always max put it perfectly. The bottom line for all of us here is we live with the specter of relapse every day, just the hard truth. It's how we deal with that that makes the difference. The truth is we could get hit by a bus tomorrow ( some of us more than others ) but we go forth nonetheless. As to your pending nuptials, if she's stuck with you through the many ups and downs that six month of chemo brings I'd call her the odds on favorite to go the distance. Bill, put the reigns in your teeth and a pistol in each hand and give him the spurs! If there's one thing ALL of us here know its that life's too short to live any other way.  Be well and congratulations

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