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Posts (27)

Mon, May 11 10:01am · Radiation with or without Temodar for Glioblastoma? in Brain Tumor

My diagnosis was difficult until I hit Mayo. I live in Albuquerque. My primary care sent me to every specialist except an oncologist. Everyone of them said that something was wrong but it wasn’t in their silo. My primary got me into Mayo Clinic. Again, my nasty insurance company was denying my ability to see a Neurologist. I saw a wonderful endocrinologist at the clinic. She said my life was in jeopardy and admitted me to Mayo Hospital. She said once admitted, my insurance company couldn’t deny anything. Within 48 hours the doctors at Mayo diagnosed me. I had many tests. They were on to something when they did the MRI with contrast. My brain had swollen over the hemisphere. Ultimately, I had a brain biopsy to confirm diagnosis. I spent over 3 weeks at the Mayo hospital in Phoenix. I had one infused Chemo and two biologic treatments there. They set up my protocols and found a hemo-oncologist to treat me in my home state. In 2016, I spent over 70 days in hospitals. I can’t tell you how great they are at Mayo. That was way more than you asked…the short answer is brain biopsy! :). My current oncologist says she loves this protocol and thinks the Temodar was a great added to high dose Methotrexate.

Sun, May 10 9:17pm · Radiation with or without Temodar for Glioblastoma? in Brain Tumor

@daughterfuturemd, I don’t think I can be helpful. I never had radiation. I was on an infused Chemo along with the oral chemo Temodar. It was a 28 day cycle with the infused on day one and the oral on day 8, repeat again on day 14. It was grueling. I will say my schedule got messed up due to the insurance company not approving Temodar in a timely fashion making me miss my first time. I have been in remission for a little over three years, so I can’t say if missing Temador was detrimental. I wish your father well and know he’s lucky to have great support from his future MD daughter.

Sun, Mar 8 2:20pm · Thoughts on adoption or surrogacy in Fertility & Reproductive Health

If it were me, I’d wait until I’m in a state with the best adoption laws. You said your current state is under 90 days. I would look for less than a week for the birthmother to change her mind. The waiting and even after placement is all stressful. I don’t want to sugarcoat it. We had a great adoption agency and attorney that worked with us. I’d say do your homework and talk to people who have adopted in the state. There is nothing to prevent you from putting in an application and then moving. There is also the international adoption route. The thing about that is the door is permanently closed for your child to ever learn about their family history. Adoptees are curious to varying degrees, and you just don’t know. My son does not know his birthfather aside from a name and what his birthmother told him. Good luck! I know it’s not something you enter into lightly.

Sat, Mar 7 8:26am · Thoughts on adoption or surrogacy in Fertility & Reproductive Health

The hubs and I have an adopted son that is now age 25. We know many other families with adopted children. We did not foster and went through an agency. I think the landscape for adopting is much different now. One thing I’d suggest is checking the laws for adoption in your state. Some states are much better than others. Twenty-five years ago in California, the birthmother had 90 days to change her mind. In NM, she only had 24 hours. You will love your kid; you and your child will also have unique challenges. It’s worth it. We stayed in contact with his birthmother and his half siblings. Now he’s an adult, so he can do that on his own, They were always respectful of our space. It’s not a first choice for anyone…adoptive parents, child or birth parents, but you do the best you can. My son’s birth parents were teenagers and ill equipped to care for him. They did the ultimate loving gesture for him, and for that we are grateful.

Thu, Feb 13 9:30pm · Exercise during chemo in Cancer: Managing Symptoms

I know you asked @georger, but I’ve worked with different trainers before and after cancer. I think the most important thing is finding a trainer you click with. Normally trainers list their qualifications, so find someone who has a certification. There are many certifications, I would look for someone that specializes in things you like to do. Watch them when they train others. Do you like what they are doing? Do they train a similar demographic as you? Let them know your goals. I started out needing to work on balance and stamina. Strength came later as did my confidence.

Wed, Feb 12 11:49am · Exercise during chemo in Cancer: Managing Symptoms

@nicee. I encourage you to do whatever you can when you feel up to it. It doesn’t matter how intense you workout. It matters that you keep moving. It’s so good for your body and brain to stay active. If walking is good, walk. When I was undergoing treatment, I just stayed out of the gym. When I first went into remission, I hired a trainer that could push me at an appropriate pace. A trainer will help your motivation in the gym. Three years in remission and I will never be what I used to be physically, but the progress I’ve made since Cancer is phenomenal. Now, put on your tennis shoes and get walking. Good luck

Wed, Feb 12 11:36am · Contrast in MRI adverse effects in Blood Cancers & Disorders

@deblee. I do get some numbness followed by a whole lot of nausea. My oncologist told me sorry you get sick, but we are sticking with the prescribed intervals. She felt the MRI side effects do not out weigh the benefits. Boo…not what I wanted to hear.

Dec 22, 2019 · Primary Central nervous system lymphoma in Brain Tumor

Hi @clavallee2, I am in remission but had Large B cell CNS Lymphoma. I had three different treatments. I had Rutiximab which is a biologic for 8 treatments, high dose methotrexate which is an infused Chemo and Temodar which is an oral Chemo. The high dose Methotrexate had to be administered in the hospital which was a four day stay every time it was administered. I’d be happy to answer any questions you have about my experiences. I’m three years in remission this month. Two more years, and they call me cured.