[ivanm]

sticky and tips for new community members?

by ivanm on Thu Feb 20, 2014 5:10 pm

The myeloma beacon community is great. Affable, helpful people who share a common affliction. We are always supportive and always answer questions even if the question has been discussed several times. I wish there was a "sticky" similar to other message boards that addresses common questions and provides some basic tips. Not sure, is there such a thing? Have I missed it? I know we have the Welcome & Tips section and the Resource section, but I feel that many people may be lost there or not find answers to some of the more common questions or tips. I often come here and read about people’s experiences and related practical advice. Some questions appear to be shared by all. They go something along the lines of what happens now, I am refractory to Velcade? I think my doctor is giving me the wrong meds, or not the best meds. What's the cost of Rev and so on. It would be awesome if there was a sticky that every patient or caregiver should read. I don’t think that the sticky could answer every question, but tips in the sticky, could lead to enabling the person to answer those questions him/herself. Nothing substitutes selfempowerment. Something along the lines of the ten commandments. Something like, not in any particular order of importance…

- Go to a myeloma specialist. I cannot stress enough. Know the difference b/n the different specialists. Know the strengths and weaknesses of various treatment centers. What is their approach, what trials they have underway?
- If you are not close to a major center such as NYC or Arkansas, consider relocating, or at least traveling there temporarily for treatment.
- Educate yourself about the disease.
- Educate yourself about different treatments and meds - both FDA approved and pending approval. If you are zealous enough, educate yourself about trials.
- Educate yourself about supplements. Find out what supplements have been studied in trials. What results? What stage trial? Talk to your doc about those supplements.
- If you are outside the US, educate yourself about what's available in your own country. If newest treatments are not available, and if finances afford it, consider traveling to countries where such treatments are available. If not, consider seeking financial help.
- You should anticipate becoming refractory long before you become refractory. You should have a backup plan and you should talk to your doctor about a backup plan.
- You should see multiple doctors, and again, to stress here, I mean multiple myeloma specialists.
- You should get your finances and life in order.
- Lastly, you should try to enjoy life and keep in mind that many have beaten the beast.

Feel free to add, or if this has already been done, I apologize in advance. It seems that many people new to the disease are rather lost and it would not hurt to have some first stop reference place for practical advice from the community on the most basic myeloma related issues.