NHL Lymphoma

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NHL Lymphoma

Hi,

diagnosed yesterday with Stage 3 Intermeddiate B Cell NHL Lymphoma.

Scared, sad and lonely.

Specialist was pretty clinical - now wondering if Ill get to see my kids grow up and grow old with my wife. I'm 48. This is the saddest part for me. Lots of tears today.

Some say you can live with it for many years. What does 'many" mean?

On watch and wait as its indolent. 

Specialist made some comment about expecting I'll need six rounds of RCHOP next year. Feel this was a statistical prediction.

Also made some comment about stats shoiwng for all patients with this, 10 years is 50/50?? 

I want to be positive but struggling to find anything to hold on to.

 

2 REPLIES 2
New Contributor

Re: NHL Lymphoma

Hi, Phil, , sorry to hear of your diagnosis, the first few days and weeks after a diagnosis are normally a roller coaster of emotions, alll of which are ‘normal’. I was diagnosed with a type of NHL seven years ago and told i had 2 to 6 years to live ! So don’t take too much notice of anyones prognosis, you will get a more a acurate idea of this the more you learn as you move forward. Check this info out about educatiing yourself after daignosis and also the Cancer Council website is a great starting point for info and help. http://david.davidyoung.com.au/Empowerment%20After%20Daignosis%20public.html

You can reach me on david@davidyoung.com.au if you need more info. Good luck with your journey.....David

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New Contributor

Re: NHL Lymphoma

Hi PhillWT - don't worry. I was treated for an aggressive b cell NHL 30 years ago and had MACOP-B (which was similar to your regime recommended but more toxic) however, you know...the treatment didn't work for me in the end I was told after massive radiotherapy. The hospitals had discharged me to live my life out at home and they said "you won't see your baby on his first birthday". How horrible!!! The point here, Phil, is that doctors are wrong and you are right to assume they can only advise from statistical information which is only based on a mean score of a bell curve or whatever they use these days. Honestly, we can prove them wrong. If you wish to live longer, you will. I didnj't want anybody to raise my baby so I prayed and begged God (as a major in philosophy God is hard to define unless you believe in something, blindly) and whatever/whoever heard me or whether it was my own will, here I am 30 yrs later. The treatments caused a different type 19/20 years later but I got over this too. nearly 12 years ago, I was told I had 12 weeks and to find a hospice! The social worker told me this over the telephone. They should be gagged..really when they talk to cancer patients like this. My NHL was also a rare B cell which became a sarcoma and usually you don't get over these or they come back quickly but seriously....nowadays, lymphoma is one of the easiest cancers to treat. I would radically change your diet if you haven't already to an organic diet only fresh fruit and vegetables and have a look at these sites which have helped me. I wish you all the best and feel free to post. I won't be here often but I just wanted to give you some hope today. You will see your children grow up. Believe it. Ask for it. Live your life as though it will happen. Do things that make you happy. Hang out with some mates, go fishing, do whatever makes you happy. And last of all, don't be down on yourself for being down about cancer. It's a natural feeling. Also be mindful that doctors and nurses document our feelings and moods when we are visiting them. They shouldn't but they do and this can change how they speak to us. Act strong when you are in front of them if you can. I think it's an intrusion on our personal feelings and they have no right to document if "she had glazed eyes when I told her...." etc. Or "he was angry today about ......". It's nothing to do with their medical assistance. They should just focus on the medical services patients want to know about. As for tailored therapy, have a look at this and I've left some other links that might help you understand what's going on in our modern medicine system. There are other options but cancer is a personal journey so I can't advise you what to do. I can only give you some links and my personal story. If I have another cancer (will know tomorrow or not, I will now choose alternative therapies) because modern medicine although it does help in some instances always makes your good cells weak and can destroy them when you need them to heal the other sick cells. It is just logical. Look at the CBS news link below.
All the best.

https://www.cbsnews.com/news/does-your-doc-have-ties-to-big-pharma-how-youll-be-able-to-find-out/

https://www.youtube.com/watch?v=ddADeIsXrOw

https://www.sciencedaily.com/releases/2008/12/081203184932.htm

https://rgcc-group.com/ (special dna test our docs won't do)

http://www.alternative-cancer-care.com/

http://oxygenhealingtherapies.com/

https://www.cancer.org/content/cancer/en/search.html?q=all+b+cell+NHL

https://www.ncbi.nlm.nih.gov/books/NBK65951/#IX-E




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