Sharing about NHL and common residence

[Cjjn3]

I've been on this site for a few months, and am very happy to be able to listen to and to share with others with NHL. There is a comfort knowing others with a common issue and that we all are striving for survival, whether it's a cure or remission, we understand the feelings that are common denominators for our well beings. So.... Thanks to everyone for sharing! FYI I live in British Columbia Canada, any other Canadians?

[Tinkerbellcgy]

This is a great community and resource for those of us living with NHL and their caregivers.

Yes, I am a Canadian and I live in Calgary, Alberta.

[Cjjn3 in reply to Tinkerbellcgy]

Totally agree, and so glad I found this site, should of searched5 years ago!

[Smileyman]

Great post, wholeheartedly share your comments, I am from London now living in Kent, South East England, in the past have visited Albert and BC.

There is good reason for us all to be hopeful, as there are new treatments coming on steam for the coming years, in general the outlook is positive. Chin up!

[Josie2rulrs in reply to Smileyman]

yes I just read about a new treatment for Hodgkins Lymphoma...that is a big breakthrough..hopefully soon one for NHL

[Cjjn3 in reply to Smileyman]

I have been to England many times,as I had son playing "football " in your country, loved your pubs! Our weather I found similar! It is comforting to share with fellow survivors, to know we all share similar concerns, no matter where we are from!

[Josie2rulrs]

I too enjoy this site and makes me feel that Im not alone with dealing with this rather strange....C don't even want to say the word.......

[l-al]

Not in Canada, would love to visit. Get enough cold weather in S.C. but rarely snow. I have had NHL since 1994, am stage 3, had stem cell transplant in 1999, and have been in remission since 2005. Feel very gratefulcat 81 and look forward to 100!! Good luck to you!

[deestb]

YES I am in BC in the Kootenays...feeling like a lost lamb... my onco is in Lethbridge ..however am hoping to get connected with Vancouver BC Cancer Center...was diagnosed in MARCH 2014... Canadian lab measurements are different that other countries I think....

How often do you see your Onco? I have been going only two times per year for the past two years....not a lot of communication actually..There is no one else with Waldenstroms NHL in my area....

[Tinkerbellcgy in reply to deestb]

How often I see my oncologist is entirely dependent at what stage in the experience I find myself. I have gone as long as 6 months while in remission and as often as monthly when receiving chemo. I have just gone back into remission and I currently see my oncologist every 3 months.

It is a little unfortunate that if you are coming to Alberta for your cancer care and observation that you aren't coming to the Tom Baker in Calgary. (Yes, I am a tad biased as the Tom Baker is world renowned and draws some of the world's best oncologists.) Having said that, I am sure you receive stellar care out of Lethbridge's Cancer Centre.

As for feeling like a lost lamb, is there something we can do to make you feel more comfortable? I know there are at least two or three other Waldenstroms NHL patients on this forum who may be able to reach out to you. Please know that you are not alone although I am sure there are times that's exactly how you feel.

Deestb, I don't have Waldemstroms but I am here for you! 💕

[Cjjn3 in reply to deestb]

Just keep on trying! Old saying"if at first you don't succeed.....

[Cjjn3 in reply to deestb]

Totally understand how you're feeling! When first diagnosed I was scared! Thought how unlucky I was to get a rare uncurable cancer! I now think I'm fortunate to have one that can be managed, and who knows, maybe through my trials and errors a breakthrough will come for others with this horrible, frightening disease.

[jmcobb50 in reply to Cjjn3]

I too felt scared, and still do at times, but as I have read more about my Stage 3 NHFL and on Watch Wait I feel fortunate that it isn't worse. Some are saying this is a chronic illness but I know it can transform. Hoping that a breakthrough will come forth soon.

[deestb]

I went to the Waldestroms Ed Forum in Sept 2015 it was very informative

I showed my lab work to two of the speakers...They reassure me I was in good hands...Travelling to l;ethbridge is less stressful and am grateful for being referred there.. Also I get emials from the Waldestrom support group in Calgary .it's a 3 hours drive to get to the meetings.....So am just curious and am hopefully getting some more information and getting quesitons answered in Vancouver.....thanks for your support...I am a lucky NHLer because no treatements yet ...it's a waiting game.....There is cutting edge research into NHL in Victoria dealing with T cells am hoping their succeses are shared soon....

[Cjjn3 in reply to deestb]

Thanks for reply. I get treatment through Vancouver cancer clinic. Lucky for me my first oncologist retired, he was nice enough, but was already in retirement mode. He's the one that said there was nothing left to try after a year of various chemo trials. New dr. Was willing to explore and found a dr in Australia who suggested an old chemo. It had to be especially brought in from drug company. That was my "miracle ". It took away the bright red itchy, flaky skin that tormented me 24/7. Could only sleep with sleeping pills +pain meds! Previous dr said o was too old for bone marrow transplant. Now my siblings have been tested and waiting for results! So..,. Don't give up, keep searching for a doctor that is pro-active, and is willing to explore and try to find solution. There is no cure I'm told, but I'm willing to try to do whatever it takes to see my grandchildren graduate ,etc!

[deestb in reply to Cjjn3]

Oh Thanks for that wonderful advice...that is a good heads up when I get the call to go to yvr....a pro active Dr is what we need....I am so grateful for not having had treatments ..yet.......my goal is to be at my grandsons gr 12 grad in the USA in 2021 As a 73 am too old for stem cell when this disease worsens ...but there is hope in Victoria BC am looking fwd to the latest research ...it's coming soon....

[Tinkerbellcgy in reply to deestb]

Deestb, keep a positive attitude and you will make your grandson's grad in 2021. It will happen! 👍

[Tinkerbellcgy in reply to Cjjn3]

Cjjn3, what a wonderful tale of your cancer experience. Perhaps it was fortuitous that your original oncologist retired. It sent you on a path to an oncologist who was forward thinking enough to delve further into exploring other options for you. My fingers are crossed that all will work out for the best for you.

[deestb in reply to Cjjn3]

I got into the BC system had appt last week in Vancouver !! A very progressive oncologist he ordered some new lab work and a CT I am very pleased....we can do televideo conferences in Cranbrook (only 1hr from my home) am feeling really positive about this ... am going to look into accomodation for future appts in Vancouver..I am 73 so I also want to see my grandchildren (13 and 11) graduate from high school !!

[laylalulu]

Nova Scotia Canada 😊

[jmcobb50]

Not Canada but Nashville, TN.