"Thanks for the update Betsy. You sound like you're doing relatively well. I'm so sad for you, Andrew, and your children. I wish we could pray for a miracle but, it doesn't sound like there's one. I just want you to know I'm…"
It's Just Benign: Connecting Benign Brain Tumor Survivors Everywhere
Betsy Macdonald's Discussions
Stroke related to Brain Tumor
5 Replies
I think my husband has had a small stroke related to his tumor. The doctors say no but starting that day his face has drooped, he has trouble finding words, and he used to type with his one good…Continue
Started this discussion. Last reply by Betsy Macdonald Dec 21, 2012.
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Betsy Macdonald commented on Betsy Macdonald's blog post Benign to Malignant"Just to update you on Andrew, he is seven week since his diagnosis of "a few months" to live. We did not do the Temozolomide because he wanted to preserve his quality of life. His symptoms have increased gradually. He…"
"Hello Betsy: I was so sorry to hear about your husband's malignant tumor. It just breaks my heart. He sounds amazing to fight this fight for so long. I will be thinking about both of you and will hope and pray (hope…"
Ann Manzi commented on Betsy Macdonald's blog post Benign to Malignant"Betsy, I know about the risk of tumors changing from benign to maligment. I did a lot of research after my emergency craniotomy and definitely asked questions, as some specialists don't share everything. My heart breaks for you and Andrew. I…"
Betsy Macdonald commented on Betsy Macdonald's blog post Benign to Malignant"Thanks Beth. This website has been a great resource for me. "
Beth Rosenthal commented on Betsy Macdonald's blog post Benign to Malignant"I am so sorry Betsy. I've heard of this, but never really connected to anyone this happened to. IJB will also be educating about this possibility w/ benign BTs. It's been up and down for you these last few years. Please keep is posted on…"
Betsy Macdonald posted a blog postBenign to Malignant
I guess I have graduated from this website. Andrew's tumor is now officially malignant. He has few options. One is temozolmide to prolong his life but not to cure. We have had a shock for sure but are ok at the moment. He have been fighting a good fight for 16 years. My husband is an amazing man.See More
Betsy Macdonald replied to Betsy Macdonald's discussion Stroke related to Brain Tumor"Thanks Ann. I am actually originally from Philadelphia though I now live in New Zealand.
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Ann Manzi replied to Betsy Macdonald's discussion Stroke related to Brain Tumor"Betsy, So sorry that husband is dealing with so many symptoms. I don't know if a dr. has diagnosed him with having a stroke. There are so many identical symptoms, so a proficient ns can do appropiate tests and give you an accurate diagnosis. I…"
Betsy Macdonald replied to Betsy Macdonald's discussion Stroke related to Brain Tumor"Thanks Julie,
How amazing that at this busy time of year you took the time to reply so eleoquently. Yes I too am somewhat sure that something happened on that day different to all the other days but I had another struggle with his GP the…"
Julie Rowlands replied to Betsy Macdonald's discussion Stroke related to Brain Tumor"Sometimes I think the lack of explanation from doctors is just as frustrating, or even more frustrating, than the tumor itself.
Your husband’s situation sounds similar to mine although it sounds like he had some problems prior to his possible…"
Beth Rosenthal replied to Betsy Macdonald's discussion Stroke related to Brain Tumor"I'm so sorry Betsy. Having a BT diagnosis is horrible enough but, strokes can happen b/c of them. I met 1 or 2 people this has happened to. But I wouldn't take 1 physician's opinion about it. Get another opinion. This is too…"
Betsy Macdonald posted a discussionStroke related to Brain Tumor
I think my husband has had a small stroke related to his tumor. The doctors say no but starting that day his face has drooped, he has trouble finding words, and he used to type with his one good hand but now all of a sudden cannot. It is hard to tell about gate and arm because he has no use of his right arm already and only about 50% movement in his leg. He also already has bad balance and coordination so it is very hard to tell. He has gotten marginally better since the first day it…See More
Betsy Macdonald posted a blog postGreat MRI but having right side weakness
Hello all. I haven't written in a while and no news is certainly good news. Andrew had a scan in August and the tumor has not grown and may even have shrunk a bit. That was great news but he has had right side weakness that has gotten gradually worse since May. Now, Andrew is at the point where he has trouble walking and has a knee and ankle brace for support and cannot write or do much at all with his right hand and arm. We are really confused about this and don't know for sure the cause since…See More
Betsy Macdonald posted a status"Andrew has just had results back from another MRI. All is unchanged! We are so relieved."
Profile Information
- Who are you?
- Family
- What type of tumor do/did you have?
- My husband has a pilocytic astricytoma.
- What kind of info do you want from this site?
- We just try to get on with it. We bury our heads in the sand a between MRI's I am afraid. As a coping method not thinking about it has worked very well.
- What city & state or city & country are you located in?
- I find that if they can operate ot give you chemo or radiation doctors don't address the patient. It seems like there are so many things to manage with medication side effects and different neurological defecits that arise that it becomes hard to manage it all. It seems that so much is unknown that other benign brain tumor sufferers would actually know a lot more than the doctors.
- How did you find itsjustbenign.org? Please be as specific as possible.
- New Zealand....from Colorado and Pennysylvania
Betsy Macdonald's Blog
Benign to Malignant
I guess I have graduated from this website. Andrew's tumor is now officially malignant. He has few options. One is temozolmide to prolong his life but not to cure. We have had a shock for sure but are ok at the moment. He have been fighting a good fight for 16 years. My husband is an amazing man.
Posted on February 12, 2013 at 2:30am — 6 Comments
Great MRI but having right side weakness
Hello all. I haven't written in a while and no news is certainly good news. Andrew had a scan in August and the tumor has not grown and may even have shrunk a bit. That was great news but he has had right side weakness that has gotten gradually worse since May. Now, Andrew is at the point where he has trouble walking and has a knee and ankle brace for support and cannot write or do much at all with his right hand and arm. We are really confused about this and don't know for sure the cause since… Continue
Posted on October 27, 2012 at 8:31pm
Update On Andrew
Andrew continues to do very well. We have been enjoying a glorious summner downunder and just got back from the states for a non-medical holiday! Andrew has regained muscle tone having gotten off the steroids (finally) and is looking extremely healthy. He had an MRI in November and the results were very positive. The tumor that is left has indeed shrunk. Radiation is tough and if you have any questions I would be happy to help you. … Continue
Posted on February 1, 2011 at 5:11pm — 4 Comments
Andrew's Survival
Just wanted everyone on the website to read about my Andrew. He was given 6 months to live by the doctors here in New Zealand and that was last Saturday.Some of you know that Andrew opted to go back to Dr. Phil Gutin at Sloan Kettering instead for a third surgery. He then had six weeks of radiation which was toughon him. Now, he is getting stronger every day! He is doing really well and is partially back to work and is resuming normal life. Six months was November 6. Last Saturday!!! We are… Continue
Posted on November 9, 2010 at 6:00pm — 5 Comments
Comment Wall (7 comments)
- At 7:17pm on July 25, 2010,
Bonnie said… - Hi Betsy,
I am so happy to hear how well Andrew is doing! I can "hear" the joy in your message. Duck shooting and driving again – how wonderful that he is getting back to doing regular things again! : )
I hope and pray the radiation treatment goes well, is effective, and any side effects are minimal. As you’ve probably read, feeling tired seems to be common.
You both take care and enjoy your life together – being back home and with your family! Please stay in touch and let me know how Andrew and you are both doing once treatment is done.
Sending ((HUGS)) and prayers……Bonnie
- At 6:08pm on July 21, 2010, Bonnie said…
- Hi Betsy - I just saw your post (on your wall on your page here) stating Andrew starts radiation and asking for advice. I suggest you repost this to the "forum" which is located under the "members" tab up on top. That way others will see it and can respond.
Are you and Andrew still here in the States? How is he doing? How are you doing? I also noticed you had posted an update on one of your earlier blogs - so will go check that.
Hope you both are doing well. Sending prayers for healing , hope, and peace.....Bonnie :)
- At 5:46pm on May 20, 2010, Bonnie said…
- Hi Betsy,
I’m sending my heartfelt prayers for a safe trip to NY on Friday.....and for a successful surgery and outcome for Andrew on May 27. If you have internet access, please keep us updated.
Prayers, blessings, and hugs……..Bonnie
- At 12:31pm on April 6, 2010,
Javi said… - Hi Betsy,
Thanks for sharing your husband's story. That's strange for a pilocytic astro to grow back like that. Sorry to hear that.
I will definitely look into propolis. i've been taking fish oil, selenium, reishi, bosweilla and vitamins. I haven't tried acupuncture yet, but I am interested in that and saunas. I met with a shaman couple last month and they gave me a bunch of tips regarding herbs and diet. I am mostly eating veggies, fish, nuts and drinking green tea, pomegranate and water. Did he change his diet at all?
I am actually meeting with a naturopath in a couple hours so I should have more to tell later. By the way I am 26 and they think I've had my lil guy since birth/infancy. I have not undergone any treatment yet,not even a biopsy. Also visual disturbances led to my diagnosis but the doctors think its unrelated which means I am currently "asymptomatic." Is your husband currently undergoing any conventional treatment. Let's hope a cure is around the corner. WOuld be great to continue exchanging experiences. I will post my game plan later, maybe that will get the ball rolling.
Best wishes,
Javi
- At 8:17pm on March 15, 2010,
Tracey Burton said… - Im so glad to meet you , so he had his in the same place? How is he doing? I love that you told me that hes 12 years out!! That makes me feel good! Is he back to "normal?" My surgery was dec 11,2008
- At 8:15pm on March 12, 2010, Beth Rosenthal said…
- Hello Betsy and thanks for joining. I started this site a year ago because I had such difficulty finding benign brain tumor survivors, like myself. I'm a long term survivor ( but have many side-effects): diagnosed in 1985 at age 11. Besides connecting with survivors, we can exchange medical info, get support, etc. Please message me with any questions or comments. Thanks again for joining.
- At 6:54pm on March 12, 2010, Pansy Canary said…
- Hi Betsy. Welcome to IJB.
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