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Hope for those of us with PCNSNHL

Mary N.
Posts: 100
Joined: Jun 2013

Hi,  I have been battling primary central nervous system non-hodgkins disease for the last four and one-half years.  Mine was large B cell diffuse with from what I've read includes most if not all of us.  I  have been receiving chemo, high dose MTX and Rituxan at least every 4 months after the inital nine months when the tumors were gone.  

Yesterday, the doc's at Staford said that I no longer have any evidence of disease.  One told me that he considers me cured.  I've live so long thinking that there is no cure for this disease, short of a stem cell transplant (I'm too old) that I just at this time am having trouble wrapping my mind around it but of course will!  So I now will have just MRI's periodically and should be able to continue living my now rather normal life as grandma and retired busy person without considering taking 6 days out of my schedule every 4 months to go into the hospital.  Life is wonderful and I think I just may get back most of the stamina the chemo leached me of and do some hiking in the back country.  I guess that I may have to adjust the stamina thing to my now being almost 75.

Many hugs to all of you battling this snarky disease and prayers for joyful recovery.

Mary

I p

 

Rocquie's picture
Rocquie
Posts: 838
Joined: Mar 2013

Such wonderful news, Mary! That must have been music to your ears and your soul. Thank you so much for sharing and enjoy your hiking this summer. 

Contratulations,

Rocquie

 

illead's picture
illead
Posts: 853
Joined: Aug 2012

I am so happy for you and you have the greatest attitude.  I am assuming you are talking about Stanford.  My husband Bill has Mantle Cell Lymphoma (don't know if you read about our adventure a few months ago).  He relapsed after 2 years and his doc sent him to Stanford.  His doctor there was Dr. Advani.  She was on the research team for a brand new drug Ibrutinib which was just released from clinical trials for MCL only.  It is a new target drug that the medical field is very excited about.  They feel that although relapse is not good for MCL, they feel he may stay in remission now but he has to take the drug for the rest of his ife.  I am telling you this because I also read that it continues to be tested for B-cell lymphomas and even tho it is still in trials for those, if needed they will consider releasing it temporarily if  needed.  So I am sure you are cancer free, but just in case, keep Ibrutinib and Dr. Advani in your files.  Stay healthy my friend and keep on giving cancer hell.  Sounds like you are running circles around everyone Wink.

Becky

Mary N.
Posts: 100
Joined: Jun 2013

hi Illead - thank you for the well wishes and info..  Hugs

 

Mary N.
Posts: 100
Joined: Jun 2013

Thank you Hope.  Itt was music to my ears after almost 5 years of continually being treated.  Hugs.

Sten's picture
Sten
Posts: 162
Joined: Apr 2013

Hi Mary,

I am happy for you!

I wish you a very good life.

Sten

Mary N.
Posts: 100
Joined: Jun 2013

Sten how are you doing?  You were able to have the transplant ?  I can't have one but yes indeed, I plan on having a great life.  Much more time with the grandkids.

Sten's picture
Sten
Posts: 162
Joined: Apr 2013

Hi Mary,

Yes I had the autologous stem cell transplant and have been free from cancer more than 1 1/2 years now. I still take chemo pills (Temodar) for four consecutive days every month to prevent a relapse, and the plan is to do this for a total of two years, that is for eight more months. 

I am a little weaker and slightly more tired than before the disease, and my feet are slightly numb. Otherwise I feel fine and I lead a normal life.

I also spend much time with grandkids. I have been traveling with my wife to Greenland and to Namibia, Botswana, and Zimbabwe.

Sten

 

jimwins's picture
jimwins
Posts: 2111
Joined: Aug 2011

Hi Mary and thanks for the great news!  Congratulations and big hugs!

Jim

Mary N.
Posts: 100
Joined: Jun 2013

Hi Jim,  How are you doing?  It is nice to see that some of us are surviving for some time.!!

Mary

jimwins's picture
jimwins
Posts: 2111
Joined: Aug 2011

I'm doing pretty well.  Don't know if you have been keeping up with the posts but "I am with child" Wink.  My child is the four legged kind that barks, poops, pees, chews, and sometimes drives me crazy :).  However, she is sweet, loving, cute and starting to show signs of intelligence (finally).  One of the cute things she does is kind of like a meerkat stance.  She'll stand up on her hind legs and stare at something that realy intrigues her.  I've got to get a picture of that.  There are a lot of survivors here!  I'm glad many have chosen to stick with the site too :).

Hugs

 

Mary N.
Posts: 100
Joined: Jun 2013

Jim,

I sometimes think what would we do without our furry friends.  They make us get up and move and they play with us and they sit and want to be petted.  I love my husband but must admit that he can't wag his tail welcome when I come home as well as my dog does.  My little poodle is now 12 and instead of being black is rapidly getting grey.  I guess he wanted to copy my hair.  I'm glad you are doing pretty well.  I am really trying to up my excercise and projects just a bit each day because I have no stamina after 4 1/2 years of chemo.  And then I have to consider, how much of how tired I am is the fact that I'm going on 75.  Next my doc said that I will be getting my port out.  I am a real chicken and hope it doesn't hurt!

 

Hugs

jimwins's picture
jimwins
Posts: 2111
Joined: Aug 2011

Dogs are wonderful although mine makes me cuss a little sometimes ;) (she's a puppy with lots of energy).  I would suppose getting the port removed will be much like it was when inserted - sore for a litle while and I imagine as strange as it sounds, I'll miss those two little bumps on my chest and that tiny tube going up my neck but not for long :).

Hugs and be well,

Jim

Mary N.
Posts: 100
Joined: Jun 2013

Hi Jim

I don't have to cuss at my dog, my husband does it for me.  He is all of 9 lbs and thinks that anything that comes around the house should be barked at.  I think I caught a virus from the grandtwins.  They were both coughing when I saw them last week.  Now comes the, do I go to the doc or not.  My fever is not high and I seem to be doing ok so will probably wait.  I'm only mentioning it because after we have this stuff, it sort of magnifys things that happen.  Five years ago, I wouldn't have even thought twice about a doc unless I was feeling really bad.  Kepp on enjoying that pup of yours.  I am so glad that my dog is house broken.

Hugs   

 

Mary

jimwins's picture
jimwins
Posts: 2111
Joined: Aug 2011

She is actually doing a little better but I don't want to brag - everytime I do, she finds trouble - LOL. 

Hugs and hope you feel better.

Mary N.
Posts: 100
Joined: Jun 2013

I will be getting the first MRI since the decision for me not to have chemo on the 15th.  As usual I am a bit concerned but somehow this time it seems a bit different.  I hope sometime I will get used to looking forward to the scans with out the bit of anxiety I feel.

bicarsa
Posts: 4
Joined: Jan 2011

Miracles do happen Mary and it sounds like you've received one.  Enjoy your new life and may God Bless you always.  Will pray for a clean MRI on the 15th!

Mary N.
Posts: 100
Joined: Jun 2013

I do believe that miracles do happen.  In fact I think that I have been the recipent of many along this journey that I have been traveling.  I was not the ideal candidate for all of what I have received.  I just am having trouble thinking it might be cured.  I had become so adjusted to thinking I would have to have chemo for the rest of my life and what a joy to think that I may not.  Thank you bicarsa for the encouragement and note.

 

mcshirley
Posts: 2
Joined: Jul 2014

I have similar story...dianosed Oct 2011; had 9 treatments of same and. 6 month of temodar. No tumor since Mar 2012. However I have 2 hips and 2 shoulders replaced and recovering from the last surgery Jun 2014. Damaged joints from steroids. Thankfully. I am done with chemo and had no radiation. Next scan in Nov. My new normal is no pain in the joints after almost 2 vears. My life has been given back to me. Lasting effects of treatments or tumor is weakness in legs and neuropathy. I hope to regain strength as I wean off morphine. So glad to be alive.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3387
Joined: May 2012

mcshirley,

I know next to nothing of your strain of cancer, but my neighbor at my previous address had stage III NHL, and did a mega-course of R-EPOCH. (Not to be cconfused with my CURRENT next-door neighbor, who ALSO has NHL, Stage IIIB.) 

The previous neighbor was about 38 at the time. Two years later, he had to have both hips replacd; the docs said it was "because of the chemo." Few people are aware of this not-too-uncommon side effect of some chemo programs.

In jest, I tell people I have so many new parts "I have to be OK." It is a humorous way to think of the issue (my "new parts" are from truama, not cancer).  

I was in ICU for 25 days many years ago, most of that time on life-support.  I was smacked out of my mind on morphine and a form of Darvon the whole period, and  had bouts of "ICU Psychosis," but was conscious and lucid virtually the whole month.   Then, decades later, I did a lot of Loritab and Atavan during my chemo.  Both times I just walked away from it, with no issues.  In the ICU setting, they came in and told me I was "cold turkey," with nothing but Tylenol available to me. I was "shaky" for one day, but then no issues.

I later learned that the doctors had been telling my mom that I might very well be "addicted" when they went to move me from ICU to acute care.  

Do not assume that you will have a problem ending the drugs, and if you do have some issues, it might not be severe.  I hope it is not a struggle for you.

max

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