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Oct 20, 2017 · I have been recently diagnosed with Waldenstrom Macroglobulinamia in Blood Cancers & Disorders

I would say that keeping your immune system well. Eating healthy, greens, no meat, no bacon. Fish and chicken. No hard liquor. Glass of occasional wine permitted. Non-alcoholic beer is best. Eating healthy will keep the cancer circuit breaker from tripping. Also, exercise is good, meditation for relaxation. Tai Chi is also good. So hopefully Waldenstromms will be kept at bay by taking care oneself. The basis of relaxation technique is to remain calm and keeping social. If one is anxious and has pessimistic thoughts, the brain gives a signal to produce the hormones cortisol and adrenaline. Cortisol especially has a deleterious affect on every cell in the body. One method of instant relaxation is slowly inhaling by nose and slowly exhaling through mouth.Remember, the acronym “F-E-A-R” is False Evidence Appearing Real. Fear can become a self=fulfilling prophecy if one overly worries and is anxious which produces cortisol.

Apr 8, 2017 · Waldenstroms and amyloidosis in Blood Cancers & Disorders

Coleen, I read a lot. I’m not a doctor. I appreciate your measured responses and high level of expertise in working with people in the throes of a difficult disease. Kudos to you.

Sep 27, 2016 · Waldenstroms and amyloidosis in Blood Cancers & Disorders

Julie, just be sure to touch base with nurses that he’s okay. They generally cover more than one patient. If you think he’s too weak, you can tell them and perhaps have a doctor check him out. As far as reading too much on internet, you can find everything you need in one place No fee and comprehensive. And taking breaks is important as well. Overanalysis can create paralysis. You can get too tired, and that’s not healthy for you. Then when you don’t take care of yourself first, it’s difficult to take care of him. So try to get sleep and eat well and hydrate too with water that has electrolytes or Gatoraide. Daily vitamin helps too. Sometimes as we get older, hopefully not always, we don’t get full attention in hospital. So being diplomatically assertive to ask for help and check on him. My thoughts are with you.

Sep 26, 2016 · Video Q&A about Prostate Cancer in Men's Health

Thanks, but I suspended myself from Facebook, because I couldn’t keep up with that and my daily administrative issues and health issues. Additionally, my wife passed from brain cancer two years ago, and I’m still snorkeling through paperwork related to her death.

Sep 26, 2016 · Waldenstroms and amyloidosis in Blood Cancers & Disorders

Julie, as a general rule of thumb because meeting with the doctor can be stressful and so that you can concentrate on what the doctor is suggesting, which are generally options, that another person can be with you to take notes [preferably another family member] and also ask questions. I have done that with my adult daughter present with me. My adult son,who is quite a distance from me, was on my cell phone with speaker activated so he could also ask questions if he wished. If you do this, then you can discuss it with your family with all the facts at your disposal.
Again, sending good thoughts your way.

Sep 26, 2016 · Video Q&A about Prostate Cancer in Men's Health

Thank you, Nate. All one can do is the best they can. Each person has their own unique biochemistry; however, there may be some similarities with other close family members. Yes, there are trials and studies ad infinitum. There are new meds discovered daily, but the candid facts are that the FDA process takes too long and the cost of purchase of meds astronomical to bring life-saving meds to patients. I would like to see more money pumped into the system to save more lives and a closer look by the FDA at the costs of bringing them to market.

Sep 23, 2016 · Waldenstroms and amyloidosis in Blood Cancers & Disorders

Julie, if you’re at Mayo, there is generally a social worker assigned to you as part of your health team. Speak to them and indicate that you need an earlier appointment because your husband’s disease has had an exponential increase. Hopefully the social worker can cut the red tape for you to see the doctor earlier. Also, I suggest that you keep your calendar available, either written or on cell phone or both so you can jot down new date and info.[if paper calendar, appointments in red, other general personal appointments in black] You should have access to Mayo’s portal. When a new date is set, you can go there and see it and other appointments as well. If that is not possible to register at portal, then call “Scheduling” and ask them if they have the appointment change that the social worker helped with you. If they do, you can request that they mail you all upcoming appointments.
Other questions: Prognosis? What type of meds for pain? Opoids may be addictive. Anything else for pain? Also, meditation is good for de-stressing for both of you. Exercise, even walking is good. you can do that together. Take Smart water with electrolytes or Gatoraide, wear good walking shoes, Just go at the pace that is comfortable. Take cell phone. Stay in fairly level streets or parkland. He should not walk alone at any time. Consider a mental health counselor that may ease his pain and stress. The social worker assigned has outside names to help.
I wish you well. I have to go. have my own issues to content with. Take care and be well.

Sep 22, 2016 · Waldenstroms and amyloidosis in Blood Cancers & Disorders

My understanding of Waldenstroms and amyloidosis is that it is a genetic disease that strikes primarily in people’s age in the 60s. My wife developed it at 68. That blood borne disease then compromises the immune system. That then creates a fertile area in the body where other cancers can grow. In my wife’s case she had six tumors in her head.Chemo and light radiation helped, but the area behind her head was very aggressive and she passed after 3 months. My paramount concern now is that if it is a genetic disease, how can my my family and well as other family members be tested for it. If they are, what is the best treatment for my family. The Waldenstrom Foundation may also have useful information there about this insidious disease. Not to upset anyone, but I was told Waldenstrom is an incurable disease. I believe if we garner our families support to battle back this disease, we can then have a cure which is our ultimate goal.