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Final diagnose NLPLHL 3A, treatment starts almost a month from now, is it wise?

Bill_NC's picture
Bill_NC
Posts: 107
Joined: Jan 2013

Hi All, I like to take your opinion on my final diagnose status, I got a call from DR today that BM biopsy is clean, and I am at stage 3A. I asked DR to have some time to visit with family (parent) living outside united states. The DR said NO problem we can start as soon you get back starting on 2/18 with Heart and lung tests before starting the chemo on FEB, 20 or 22. He said that it's slow growing cancer cells and usually they give a month to start chemo on patients after surgery to more aggressive type of cancer. So Do you think unwise thing to delay the treatment ? your thoughts.

P.S. intial diagnose from the pathalogy lab was on 1/10/2013. 1/17 PET scan, 1/22 BMB, 1/28 BMB clean.

 

DadysGirl
Posts: 305
Joined: Aug 2011

Glad BM is clean... What is the exact type you have and which locations? Writing in a hurry didnt get a chance to check prev mags... I apologize

Bill_NC's picture
Bill_NC
Posts: 107
Joined: Jan 2013

under armpit, one lymph in neck and one lymph in pelvic area. all non bulky. 

GKH
Posts: 288
Joined: Jul 2012

My guess is waiting three weeks won't matter if it is indolent. Enjoy your family.

allmost60's picture
allmost60
Posts: 3150
Joined: Jul 2010

Hi Bill,

  I think you will be just fine waiting 3 weeks. Go visit your family and enjoy yourself. This will give you a chance to relax before starting your treatment. Let us know how things progress with you. Have fun on your trip. Best wishes...Sue

(Follicular NHL-grade2-stage3-typeA-Dx 6/10-age 62)

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

Bill, that's exactly where my tumors were as well. My wife and I figured out that I probably had this for around six years before it was finally diagnosed. With nlphl there's probably no great hurry to start treatment, so go enjoy yourself for a while

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 1002
Joined: May 2012

Bill,

My scenario was almost identical: After going over everything, my first infusion was set for a few weeks later. I asked the onc about this, and he assured me that it would make no difference whatsoever. With some strains of HL it WOULD matter, but not with NLPHL, which is, as you have learned, very indolent.  The heart and lung baselines are for comparison if you have breathing or cardiac issues later on (very rare, but possible with some of these drugs).

You are blessed with (relative) youth, and at your age, NLPHL has a close to 100% full-remission prognosis. NOTHING is 100% in cancer, but your presentation is close

Go out and have your favorite meal a few times. Your appetite will be gone soon, so enjoy this short waiting period with fun things.

How many infusions are you going to receive ?

Aaron and I have been exactly where you are today. All three of us were stage III-A at diagnosis.  We are here for you, new friend.

max

Bill_NC's picture
Bill_NC
Posts: 107
Joined: Jan 2013

Thanks Max. I met with Nurse and she explained the treatment and showed me the facility where I'be taking my chemo. The DR set me up to 6 cycle of ABVD. on the 2/20 . twice a month. That's six months of life not been able to be normal. My main concern after the treatment and if I completely recover, "if GOD wills". Will I be able to live my life back like it use to be, geeting Married be able to enjoy life, or will I be living under the fear it may come back. Also they did not mention radiation therapy at all.  Not sure way. Do you think I have to do Radiation too ?

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 1002
Joined: May 2012

Bill,

Aaron and I had 12 infusions.  Actually, six cycles will tie up three months of your life, not six.  Most likely you will have NO radiation; Aaron and I did not. "Late stage" is considered anything past Stage II, and late stage HL normally does not get radiated.

I absolutely believe that you can and will have a normal life after this is over. There is no reason on earth why you should not get married, if you are so inclined.   My thoughts.

max

Bill_NC's picture
Bill_NC
Posts: 107
Joined: Jan 2013

Is it TRUE ?, I been told by the Nurse it's 6 cycles 12 treatments once every 2 weeks. that add up to six months. Where did I go wrong with my math. ?

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 1002
Joined: May 2012

Bill,

No error on your part.  The confusion was mine . ABVD (like all other combination therapies) can be given in various numbers of cycles.  I must have misread something in your earlier post, but regardless, YOU know better than anyone what the doc and nurse told you about your own treatment. ABVD is given once every 14 days, and 12 treatments is therefore six months -- exactly what Aaron and I both received.  A confusion over the term "treatment" verses "cycle."  I always just referred to my number of "infusions" to preclude misunderstanding.

You will find that these six months fly by very quickly.  I found them to be time well spent. I hope you can adopt that view as well, for your own well-being.

max

Bill_NC's picture
Bill_NC
Posts: 107
Joined: Jan 2013

Oh.. Max I was hoping I am wrong and only have 3 months to go through this. :) but no worry. I am traveling to see my family and be back on 2/18 to start treatment on 2/20. If GOD will I 'll go through it without issues. Untill then wish you all the best.

jimwins's picture
jimwins
Posts: 1976
Joined: Aug 2011

Bill, I think you are going to do fine :).  I know it's very scary at this point - we've all been there.  Once you start treatment and get into the routine, it won't be as bad as you expect.  Believe me, it's not a picnic but you will get through it.  It really helped me to try to maintain a positive attitude and simply find reasons to laugh.  Humor and attititude don't cost anything and will help you through this.

Besides, you got all of us here and I guarantee somebody here will make you laugh at some point ;).

Big hugs and enjoy your trip.  We'd love to hear from you and pics would be nice too if you are inclined to share.

Jim

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