Regrowth after surgery in just one month???

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Regrowth after surgery in just one month???

by bizzerbee on Wed Jun 13, 2018 04:10 PM

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We got the results from my Husbands pre-radiation MRI.. they said that it seems like disease progression. He has AA3 and had a total resection. He has the IDH1 mutation but not the MGMT. I am in shock. How would it have grown so quickly? It was a 100% gross total removal! I am upset it feels like a huge set back on a journey that we have barely even begun! Has anyone had a similar experience?

RE: Regrowth after surgery in just one month???

by Borov84 on Thu Jun 14, 2018 09:18 PM

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On Jun 13, 2018 4:10 PM bizzerbee wrote:

We got the results from my Husbands pre-radiation MRI.. they said that it seems like disease progression. He has AA3 and had a total resection. He has the IDH1 mutation but not the MGMT. I am in shock. How would it have grown so quickly? It was a 100% gross total removal! I am upset it feels like a huge set back on a journey that we have barely even begun! Has anyone had a similar experience?
I’m shocked that it would have come back so quickly as well. Are they 100% sure it’s progression? I’ve heard that sometimes necrosis can look like progression, but I haven’t been in this situation so I can’t say from experience. I would ask a LOT of questions. Have they recommended a biopsy or holding off on radiation?

RE: Regrowth after surgery in just one month???

by bizzerbee on Wed Jun 20, 2018 05:15 PM

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It looks like it’s T2 flair progression.. I guess that implies it’s gearing up to regrow not that there is already growth. No change in treatment except radiation targeting those areas a little bit stronger. All we can do is wait for the radiation treatments to end and then see what’s going on in the follow up MRI. Hate this hurry up and wait crap.

RE: Regrowth after surgery in just one month???

by Borov84 on Wed Jun 20, 2018 05:24 PM

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On Jun 20, 2018 5:15 PM bizzerbee wrote:

It looks like it’s T2 flair progression.. I guess that implies it’s gearing up to regrow not that there is already growth. No change in treatment except radiation targeting those areas a little bit stronger. All we can do is wait for the radiation treatments to end and then see what’s going on in the follow up MRI. Hate this hurry up and wait crap.
I’m so glad to hear that. I have a spot of T2 flair that has existed since my first MRI. They made sure to hit it during radiation to be on the safe side. It has increase slightly in size so we’re monitoring it, but so far neither my team at home or at MD Anderson is concerned enough to change the course of treatment. Best of luck with the radiation.

RE: Regrowth after surgery in just one month???

by bizzerbee on Wed Jun 20, 2018 06:47 PM

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How long into your journey are you? Are your NOs optimistic? It seems from this site that some are luck and have very positive oncologists and others have pessimistic ones.

RE: Regrowth after surgery in just one month???

by Borov84 on Wed Jun 20, 2018 07:06 PM

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On Jun 20, 2018 6:47 PM bizzerbee wrote:

How long into your journey are you? Are your NOs optimistic? It seems from this site that some are luck and have very positive oncologists and others have pessimistic ones.
I’m starting round 9 of 12 of Temodar on Sunday, so I’ll complete my treatment in September. Yesterday was one year since my initial diagnosis after a grand mal seizure. Both of my NO’s are very optimistic, as are my radiation oncologist and neurosurgeon. There are so many new trials in the works right now, so I feel confident that if this comes back in 5 or 10 years, we’ll have some new options for treatment. Is your husband doing proton therapy or traditional radiation?

RE: Regrowth after surgery in just one month???

by bizzerbee on Thu Jun 21, 2018 12:32 AM

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You are right there is so much on the horizon for brain cancer. My husband is just getting regular radiation. Very pin pointed but not proton. They don’t have that type here in Wisconsin. I was surprised that out NO did not talk more to us about the T2 flair on the post op MRI. Did your tumor have any of the favorable markers? How was the radiation for you? Did it leave you with a lot of fatigue? Was the maintenxe chemo much harder? My husband hasn’t had any side effects from the 140mg of temodar he is on right now but I know that the maintenance chemo is a much higher dose. Thank you for answering my million questions!

RE: Regrowth after surgery in just one month???

by Borov84 on Thu Jun 21, 2018 04:09 AM

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On Jun 21, 2018 12:32 AM bizzerbee wrote:

You are right there is so much on the horizon for brain cancer. My husband is just getting regular radiation. Very pin pointed but not proton. They don’t have that type here in Wisconsin. I was surprised that out NO did not talk more to us about the T2 flair on the post op MRI. Did your tumor have any of the favorable markers? How was the radiation for you? Did it leave you with a lot of fatigue? Was the maintenxe chemo much harder? My husband hasn’t had any side effects from the 140mg of temodar he is on right now but I know that the maintenance chemo is a much higher dose. Thank you for answering my million questions!
My NO here in Denver always forgets to recheck the T2 flair since he’s more concerned with looking at the resection cavity. We actually had an MRI follow up just yesterday and spent quite a bit of time comparing my last 3 local MRIs to see if there has been any additional change, but nothing significant fortunately. We were a bit scared for a bit. My husband is much better with all of the terms, so hopefully I’ll get this right... I do have the IDH mutation, but it is non co-deleted which I think means it doesn’t respond as favorably to the Temodar as co-deleted (I think the term MGMT might be along the same lines). I was really fortunate that during proton I felt great the whole time, never had any fatigue or other issues. My doctor thought I was just faking it and putting on a brave face. I think it helped that I continued working remotely the whole time, and we had our 9 month old with us all day so I didn’t really have time for fatigue. I didn’t do any chemo during radiation, but I did do a single 140 mg round between surgery and radiation while we waited for a second opinion. The full 280 mg dose is definitely harder, but manageable as long as he gives himself time to rest. I take my first pill on Sunday night and I’m pretty okay Monday and Tuesday. By Wednesday I start getting an “ick” feeling in my stomach, I’m more tired, and I have nausea if I don’t take zofran twice a day. On Thursday I usually nap in the afternoon, and Friday I sleep a lot. Saturday is my recovery day and by Sunday I’m almost back to normal. By Monday I’m usually back to 100% (or very close), so it’s truly a full week. I work from home the whole week, except for Friday when I’m just wiped. More than happy to answer any questions! If I recall your initial post correctly, I think your husband is in a very similar situation to mine. It’s hard to believe, but yesterday was the 1 year anniversary of my seizure/diagnosis, and I’m about to start my 9th chemo cycle. Time flies when you’re having fun!

RE: Regrowth after surgery in just one month???

by bizzerbee on Thu Jun 21, 2018 06:26 PM

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Thank you for answering my questions. It sounds like you and my husband are very much so in the same boat! This is such a wild ride and I have found that I can only really get an understanding of the reality of this type of cancer from these forums; talking to actual people and not looking at medical sites that have very generic info. I am hoping that our two year old keeps my husband active and helps to fight the fatigue. Wonderful that you are coming up on a year! Congrats. I am sending positive vibes and many thanks your way!

RE: Regrowth after surgery in just one month???

by Borov84 on Fri Jun 22, 2018 07:39 PM

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On Jun 21, 2018 6:26 PM bizzerbee wrote:

Thank you for answering my questions. It sounds like you and my husband are very much so in the same boat! This is such a wild ride and I have found that I can only really get an understanding of the reality of this type of cancer from these forums; talking to actual people and not looking at medical sites that have very generic info. I am hoping that our two year old keeps my husband active and helps to fight the fatigue. Wonderful that you are coming up on a year! Congrats. I am sending positive vibes and many thanks your way!
More than happy to answer any other questions that you have, feel free to message me. All of the medical trials and statistics can be overwhelming, and some of it is so old that it’s irrelevant. Best of luck!!
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