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I've learned so much more in one day, than I learned all year. So thank you!!
what resources you have accessed? How you discovered the resources? Are there resources available you discovered by accident?
You might want to consider requesting a referral to a palliative care specialist. They have lots of tricks up their sleeve to manage pain.
this is the best sharing place I've found in the four years since I've been diagnosed. Nice, understanding, and positive people.
I've tried to live by the motto, "The absence of bad news shall be taken as good news."
I hope everyone switches to the term Sjogren's disease. Change can be slow, but this is a much more accurate term. Sjogren's is a well characterized disease. It is closely related to lupus and RA.
If you have Stage IV cancer and aren't a little anxious, you don't understand your situation.
I felt a tremendous emotional rush, crying, and when I carefully reached up to touch my eyes, there were actual tears gathered there! This was miraculous because I hadn't had tears appear when crying for a decade.
How do you help your health care team better understand the emotional impact of illness on your life?
As time passes, please remember to eat, even if you've no appetite; to sleep, even if the bed feels cold; to smile, even if hollow and numb; to chat with friends, even when there are no words.
In 50 years we have yet to find anything as effective at knocking down OC as the platins.
Carbo/taxol remains gold standard for first line treatment in nearly all forms of ovarian cancer regardless.
Just have to remind them we are PEOPLE not just patients.
May God bless you with comfort, joy, and peace
You have done an awesome amount of research! Can you give us all a lesson on how you approach this?
IL2 saved my life. I had weeks to live and now after a year I am still here.
There is no place like SP.
If you get a moment, please help us share the word that we are open for conversation and support.
It's official - we are now connected to iConquerMS via links on our home page at www.iconquerms.org.
Hard to believe they are losing money on it - you should have seen my last hospital bill!
The question I would like answered is why more physicians don't suggest il2?
as my husband says, "you're not dying of cancer, you're living with it."
Wow, they really want patients who've suffered and exhausted just about everything else.
PFAC litmus test of five questions
I remember the day I finally got my "official" diagnosis. Actually, after 7 neuros and lots of questions, it was actually a relief.
I salute you for helping your brother in this loving way.
Some people find journal writing, yoga, relaxation exercises, or meditation help them to cope with the stress of caregiving.
I also find that regular exercise helps me relieve stress and is an outlet for me.
I have found that working out arrangements to be out of the house to do things I enjoy, visit with friends, or just loaf around helps me stay sane and healthy.
Inlyta's big advantage is that it has less side effects
if you want to choose not to have any further doses they tell you to let them know that and they will stop. I trust them with my life.
You're safer getting IL2 at BIDMC than you are driving your car down the road!
Hypertension is Inlyta's Achilles heel
The longer you try to ignore the pain, the more damage you are probably doing and the more difficult it will be to rehab.
I don't know anyone with Sjogrens, so it's really nice to be able to discuss it, ask questions and get advice
The only other advise I've heard is to try to make a personal relationship with a doc. "Hi! How are YOU today? How is your son? Did he make the team?"
I'm just running out of adaptability
I want to know WHY it works. I want to know if it is possible that the side effects in people like us are not the same as in people without this disorder.
You are not alone feeling scared about the whole transfer to adult care experience. It is difficult but doable.
It is so amazing to read your history, really gives me a lot of hope to my father, who is also responding very well to Sunitinib.
We can either sit in the corner, and fade away, like water, and nutrient starved flower, or pull it all together, so that we blossom into something to be proud of!
We must dig deep, to get it together, to get the help we need, and to gain the most benefit from our treatments.
To wake up and hear from everyone gave me some strength to go to my next appointment tomorrow.
I'm sorry you have to find yourself here. You're are young, and I imagine scared. You are so lucky you have found a good place here for info, encouragement, direction.
For me, finding this site, I knew I would not be alone in my MM Journey any more.
I've been consistently disappointed and frustrated with medical center websites, and would love to see a center lead the way with some great changes for others to follow.
It really seems like there are quite a few different trials out there nowadays.
This forum gives so much hope to many especially those with stage IV.
I'm encouraged by all the clinical trials that are available for colon cancer.
No one can advocate for you - like you can advocate for you.
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