Since we have to wait until March 26th for my dad's first appointment while his MM doctor is on vacation, what things can he do now while he is waiting? All tips appreciated.
If possible, try to research as much as you can abut MM so that you can write a list of questions. As long as everyone is in agreement, I took a digital recorder to my first few appointments since I could not always remember everything that was discussed. The Multiple Myeloma Research Foundation can send you brochures and booklets that are very informative and useful in understanding MM. On their website, they have a section for newly diagnosed patients that I found very helpful.
I hope these suggestions help.
Multiple Myeloma Research Foundation (MMRF)383 Main Avenue, 5th FloorNorwalk, CT 06851
Phone: (203) 229-0464Fax: (203) 229-0572Email: ■■■■■■■■■■■■■■■■■■■: www.themmrf.org
What Semla says is true and great advice. I’ve been on this journey for over 8 years and I have a lot under my belt. Back then I was given 1 year to live and I’m still here I may not be able to say that tomorrow but tonight I’m here. The only thing I can add to your situation is this:
It appears as though your husband is pretty far along. My advice is to get another doctor and fast. You’re going to need one anyway for a second opinion. He’ll have tons of tests to go through.
If you want to contact me you can find me on Facebook
http://m.facebook.com/StandUpForCancer
Or
The one most useed is:
http://bit.ly/197nqsn
Have a lovely evening
Niel
Hi She, I would recommend becoming educated and quickly, there is power in knowledge, and getting the power to beat this is instrumental in having peace of mind. Here are some sites that have helped me learn.
http://multiplemyelomablog.com/2012/07/the-spice-curcumin-and-myeloma-part-two.html
http://myeloma.org/Main.action
http://multiplemyelomablog.com/2012/07/the-spice-curcumin-and-myeloma-part-two.html
Remember, there is a great deal of information out there, however check the stories date as things have changed for MM very quickly. I would start with the myelomabeacon as it is a very good site.
God Bless
Rodney
Thank you Salma, I love the idea of recording the doctors discussion. It is easy to miss information. I will talk to him about the second opinion. Thank you Rodney for the links. I am getting ready to move back so I can take care of my dad and go to his appointments with him. Right now I am living out of state.
It's really beneficial to record the doctor's visits, if your doctor is amenable. I record mine to my smartphone, it's amazing how much you can mis-remember or forget, even if you're jotting down notes. A good practice not just for the first visit, but throughout treatment.
Also, I agree with the others - research, research, research! Knowledge is power! When you ask intelligent questions, not only will you hopefully get some good information but I think also you earn your doctor's respect. I have found many good websites but for me the most helpful have been the Multiple Myeloma Research Foundation, they are GREAT and very responsive. Also Myeloma Beacon.
www.myelomabeacon.com/
As others have stated, when surfing the internet for information, check the dates of the articles you read. So much progress has been made in the last few years in treatment of this disease and as a result prognosis is generally much better now. If you read articles from even 5 or 6 years ago, the picture has changed for the better! Good luck to your dad in the battle ahead, and to you in helping him through it. The other piece of advice is for him to get himself into as good shape as possible, eat sensibly and get regular exercise (even if it's just walking for 30 minutes to an hour each day). The better condition he's in, the better he'll handle the treatments ahead.
Thank you Tammy!
Tammy said:
It's really beneficial to record the doctor's visits, if your doctor is amenable. I record mine to my smartphone, it's amazing how much you can mis-remember or forget, even if you're jotting down notes. A good practice not just for the first visit, but throughout treatment.
Also, I agree with the others - research, research, research! Knowledge is power! When you ask intelligent questions, not only will you hopefully get some good information but I think also you earn your doctor's respect. I have found many good websites but for me the most helpful have been the Multiple Myeloma Research Foundation, they are GREAT and very responsive. Also Myeloma Beacon.
www.myelomabeacon.com/
As others have stated, when surfing the internet for information, check the dates of the articles you read. So much progress has been made in the last few years in treatment of this disease and as a result prognosis is generally much better now. If you read articles from even 5 or 6 years ago, the picture has changed for the better! Good luck to your dad in the battle ahead, and to you in helping him through it. The other piece of advice is for him to get himself into as good shape as possible, eat sensibly and get regular exercise (even if it's just walking for 30 minutes to an hour each day). The better condition he's in, the better he'll handle the treatments ahead.