2nd re-occurrence of Anaplastic Astrocytoma

Posted by aa3 @aa3, Aug 7, 2021

Thank you all the moderators and volunteers for your time. A brief case history of my brain tumor :
1) June2015 : discovery of anaplastic astrocytoma grade 3 due to a seizure 37yr old healthy man with no symptoms
2) Brain surgery at Mass General Hospital to remove the tumor. The oncologist at the time didn’t want to do any follow up treatments (radiation or chemo) as there was IDH mutation and they thought this should be a slow growing tumor.
3) 4-6 monthly MRI scans to follow up. Mar 2017, scans showed tumor regrowing.
4) April 2017, 2nd brain surgery followed by 6 weeks of radiation and a few cycles of Temodar. Only side effects were fatigue, nausea. No symptoms. This round of treatment ended in April 2018
5) Have followed up with MRI scans every 4-6 months.
6) Last week on a bike ride, I had a seizure and ended up at an ER. CAT scan had concerns and so followed up with my neuro-onco at MGH.
7) MRI scan showed tumor growth in 6-7 new places in the brain!!
8) My dr thinks it has all developed in the last 6-8 weeks.
9) They ruled our surgery and radiation as the field will be vast and I am in year 4 since my last radiation treatment.
10) They found a NUV-422 clinical trail offered at Dana Farber cancer institute for which I might qualify. This is a CDK inhibitor treatment. I am now 43 yrs old – still healthy and no symptoms.
11) I am struggling to decide if I should undergo any further treatments that might diminish my quality of life? I have 2 young daughters (15 and 10) and I wish to see atleast one of them graduate high school in 3 years!

We have heard MGH and DFCI are the best in the northeast. Anyone has advice or suggestions? Does it make sense to approach Mayo for 3rd opinion? Thank you!

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Hello @aa3 I'm Scott and I'm glad you found Mayo Connect and this area. My wife was 48 when she was diagnosed and began her 14+ year war with brain cancer, during which I was her caregiver.

From the very beginning of her journey, her litmus test/mantra was always 'quality over quantity'. While I know every patient, their disease, family concerns, journey, caregivers, etc. are unique, in her case this was a decision she never regretted.

While her goals changed over time (her first was to be with our son at this wedding) her focus on the quality of her life was always foremost in how she would/could work towards that, her subsequent goals, and each care option.

Again, just in her case, once she found a neuro-oncologist she really connected with she settled there and on his counsel, advice, and care.

I'm happy to answer any questions you might have.

Strength, Courage, and Peace

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@IndianaScott

Hello @aa3 I'm Scott and I'm glad you found Mayo Connect and this area. My wife was 48 when she was diagnosed and began her 14+ year war with brain cancer, during which I was her caregiver.

From the very beginning of her journey, her litmus test/mantra was always 'quality over quantity'. While I know every patient, their disease, family concerns, journey, caregivers, etc. are unique, in her case this was a decision she never regretted.

While her goals changed over time (her first was to be with our son at this wedding) her focus on the quality of her life was always foremost in how she would/could work towards that, her subsequent goals, and each care option.

Again, just in her case, once she found a neuro-oncologist she really connected with she settled there and on his counsel, advice, and care.

I'm happy to answer any questions you might have.

Strength, Courage, and Peace

Jump to this post

Thanks @IndianaScott for your response and time. I understand and appreciate everyone’s journey through this disease is different. My challenge is – I have absolutely no symptoms. When I read all the side effects of these drugs and treatments, I will be worse than what I am today. But if I don’t do any treatment, am I doing an injustice with my family? Am I not giving a chance to have me around longer? I also do not want to be a burden and have them experience a dragged out process. I wish there was a switch that could be turned off when it was time – which in my case will be the time when I can’t take care of myself, when I can’t drive myself to my dr appointments!

If you could, can you share the type of cancer your spouse was dealing with and the treatment experience?
Thank you!

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@aa3

Thanks @IndianaScott for your response and time. I understand and appreciate everyone’s journey through this disease is different. My challenge is – I have absolutely no symptoms. When I read all the side effects of these drugs and treatments, I will be worse than what I am today. But if I don’t do any treatment, am I doing an injustice with my family? Am I not giving a chance to have me around longer? I also do not want to be a burden and have them experience a dragged out process. I wish there was a switch that could be turned off when it was time – which in my case will be the time when I can’t take care of myself, when I can’t drive myself to my dr appointments!

If you could, can you share the type of cancer your spouse was dealing with and the treatment experience?
Thank you!

Jump to this post

Hi @aa3

My wife's brain tumor went through changes as her disease progressed. IIRC the doctors most often used the large bucket name of astrocytoma. Her main concern always was what grade they were using to describe it at various times. Her tumor was what they called at the time 'diffusely infused' so it was cancer cells, normal cells, etc., and given its style and location radiation wasn't an option for her. They did one resection, but due to the resulting impacts they did that only once for fear of her having to fight those first battles over again as she lost almost all her important abilities. She and her doctors also decided against chemo due to the various side effects, her limited abilities, and the outcomes from the resection.

You said you have no symptoms, but also said you had a seizure a week ago. Did I misread that? Seizures were one of the initial symptoms my wife suffered. She also had significant olfactory, auditory, and visual hallucinations along with early head pain.

Strength, Courage, and Peace

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@IndianaScott – thanks for sharing the details. I am sorry I contradicted myself. So, I have had a total of 2 seizures. The 1st one led to the diagnosis in 2015 and the 2nd one last month led to MRI and a discovery of 2nd regrowth.

yes, those are the only symptoms. Other than these 2 episodes, I have been very normal. I think I am healthy, have worked full time through 2 surgeries, radiation and chemo. I have no other symptoms and if I would tell anyone about my brain tumor they would say I am joking – I wish I was!

We are trying to reach out to someone at the Mayo clinic for a 2nd opinion on this phase 1 clinical trail NUV-422.

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Hi there. I am sorry you are fighting this cancer beast. I have no advice other than reaching out to Jana on Inspire, a website offered by ABTA. She is the most knowledgeable person I know and has many resources 🙏🏻

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