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Cancer

If you have cancer.

If you had cancer.

If you know someone with cancer.

If you want to talk about cancer.

We won't pray.  We won't blame gods.  We won't give credit to gods.  

We face the diagnosis and know, it is what it is.  

To the extent that we can, we will define our own course.

Members: 22
Latest Activity: Apr 13

Cancer

Cancer changes lives.

We have to deal with medical profession.

We have to deal with medications.

We have to deal with new discomfort and pain.

We have to create dignity, where there is indignity.

We have to deal with family members, friends, coworkers, and strangers, in a changed way.

We resolve to go forward with strength, resilience, purpose, pride, and integrity.

We define ourselves. Cancer does not define us.

Discussion Forum

Sean Parker to Donate $250,000,000 to Fight Cancer

Started by John Jubinsky. Last reply by Michael Penn Apr 13. 1 Reply

Billionaire Sean Parker who was the first president of Facebook and a co-founder of Napster will donate $250,000,000 to fund immunotherapy research to fight cancer. This type of therapy fights cancer…Continue

New Hope for Hard-to-Treat Cancers

Started by Qiana-Maieev. Last reply by Ruth Anthony-Gardner Apr 7. 2 Replies

Ancient Algae Offer New Hope for Hard-to-Treat CancersPosted: 06 Apr 2016 01:57 PM PDTIn one of the oldest life…Continue

Johns Hopkins Receives $125,000,000 to Fight Cancer

Started by John Jubinsky. Last reply by Donald L. Engel Mar 31. 2 Replies

Johns Hopkins has received 125 million dollars to develop treatments that fight cancer by having the patient’s own immune system attack it. Per the article:Johns Hopkins has announced plans for the…Continue

A Personal Cancer Blog

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Comment by Joan Denoo on February 18, 2016 at 10:32pm

Daniel, I look forward to what my next round of appointments will reveal. To be perfectly honest with you, I enjoy my fatigue; it gives me an excuse to read, write, and attend to my mail. When I open the greenhouse, however, I want a full head of steam. 

Comment by Daniel W on February 18, 2016 at 8:14pm
Kelly, welcome to the group!

Josn, so far I have not had to buy on my own, so my oral chemotherapy is still via USA. If I did have to buy it myself, I would look i to the online pharmacies first, and see what they require. I dont know if a trip to a Canadian Dr or pharmacy is required but even with that, the cost would be a fraction of self pay here.

They can check your iron level. They can learn a lot from that.

if the iron level is low despite supplement, you are either not absorbing it or you are losing it. If you take acid - suppressing medication, that interferes with iron absorption. In my case, I am missing most of the stomach and also have to take acid suppresdion for life, so I was given an iron infusion. That made a world of difference.

I have the same symptoms as you. Within a few weeks of the iron infusion, those are at least 50% better. It really helped.
Comment by Joan Denoo on February 18, 2016 at 7:44pm

Daniel, may I ask how you are going to manage the purchases in Canada? 

My GP and my oncologist just told me I am very anemic, in spite of the fact I take a high-quality iron pill that my nutritionist recommended, twice a day instead of once a day. We discussed my wanting to start making vegetarian meals; they both suggested I delay that until we find out what is going on. I have a string of doctor's appointments this spring that I missed this winter because the driving conditions were so bad. My calendar now includes my neurologist, cardiologist, and physical therapist. 

My only presenting complaint to each of them was fatigue, foggy thinking, and forgetfulness. I am still getting lost when I drive so I decided to give up driving, even if it is just to the grocery store in my neighborhood in Spokane. I don't drive at all in the country; there are too many country roads on which to get lost. My GPS on my car and my phone passed inspection by Larry. I don't know if it is being 80 or being a cancer survivor, but the 80s are not at all like turning 70.

The good news, I am triumphal and content with my new living arrangements. I move this Saturday! I selected a few (haha) books to take there. We will be moving bookcases into my bedroom and just about squeeze out the bed, chest of drawers, and dresser! As long as I have my books, recliner, and space for a fluffy rug for Dominic, I am joyous!

Comment by Daniel W on December 24, 2015 at 7:51am
Thank you Ruth and Terry for your encouraging words.
One correction. Ruth, my health plan IS currently paying for the gleevec. I dont know what will happen in March when the 3 years mark arrives. If they dont, pay for it, my plan is to buy it in Canada, where the cost is 90% less than in the USA. I did have to pay cash for the visit to OHSU. My health plan will not cover that.
Comment by Ruth Anthony-Gardner on December 23, 2015 at 8:34pm

Thanks for your update, Daniel. Health plans ... don't get me started. You were right to get outside advice, and it's super good you can afford to continue gleevec on your own. Keep those little buggers asleep.

Comment by Dr. Terence Meaden on December 23, 2015 at 12:14pm

Daniel, I don't know how, but I missed your 12 December message or I would have replied at once. Thank you for updating us. We are all with you. Keep us in touch with events. A Happy New Year to you and all. 

Comment by Daniel W on December 23, 2015 at 8:38am
Thanks for your support, all. It really does make a huge difference.

Going outside my health plan was logistically challenging, even though I am very fortunate I can pay out of pocket. The hoops to jump through are challenging. But glad I did.

My health plan oncologist told me I would take the cancer treatment, gleevec, 3 years, that's it. I really didnt feel right with that. The OHSU oncologist stated the gleevec keeps the cancer cells asleep, like weed seeds in a lawn. I actually knew that. Stop gleevec. and chance of recurrence is 95% in the next 2 years. Continue gleevec, and it's 5%.

He also had me check iron level. Turned out to be extremely low. Will be arranging for an infusion of iron soon. I hope that helps with the all pervasive fatigue, fog, and aches. If not, it's OK. But at least Im trying.

I wasnt going to take all of my accumulated vacation. They are terribly short staffed. But I cant handle it any more, so I put in vacation requsts amounting to almost half of my remaining time.

Oh well. Again, thanks for the supportive comments.

You all have challenges too. And you handle them very well, an example for me!

Joan, there may be a contingent of one or 2 or 3 at the reason rally. We'll see. Might all be able to meet at a single table in a restaurant, assuming it is more than just me! I equally want to go to the Smithsonian and botanical garden.
Comment by Michael Penn on December 23, 2015 at 6:27am

That's good news, Daniel. Most of you in this forum are so much more brave than me. My only cancer was basil cell and that's a pretty easy one.

Comment by Joan Denoo on December 23, 2015 at 5:25am

Daniel, I just now read your Dec. 12 post. I am so sorry I missed it and found it only by accident. Thankfully, your self-advocacy worked and you know there are "no awakening gremlins". I am sorry I didn't find your message on the day you sent it.

Your plans to go to OHSU makes good sense. With well trained doctors and staff, modern equipment and treatments, and you being a good advocate for yourself, creates a good team working with you.   

So! You are going to the Reason Rally. and Washington D.C.! That will be a treat. Hopefully, A/ will have a get-together.

I am lazy. I spend many hours just doing what pleases me, and that includes naps. It isn't too much longer until your retirement and you can do what you want.

OHSU

Comment by Plinius on December 23, 2015 at 5:20am

Good news Daniel! Congrats! 

 

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