Brain Tumor Progression: What's the best next step

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Brain Tumor Progression: What's the best next step

by mbanat on Wed Sep 05, 2012 12:22 AM

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my case: I have had a surgery back in February 2009 and while the operation was successful, a total resection was not possible. Surgery was done while I was awake, and after tests, further resection showed that I would start losing language functions along with other skills. The identified grade II astrocytoma located in the left temporal lobe was stable afterwards. Since then, I have been following up every six months with MRI scans. Back in 12/2011, some mild progression showed up. today's MRI shows mild progression is continuing ... Given that the tumor is in temporal lope, and that further resection means funny things will happen...doctors are recommending radiotherapy and Temodar (chemo) is the way to go.

I wish that this was all. Two out of four doctors recommended I go for radioo/chemo, two others said I should watch and wait. Two out of four radiologist said growth is so mild that they won't report progression, two others said that it cannot be ignored.

In other words, I am on my own to make a decision.

On the other hand, I feel positive about Temodar. Question unanswered however, can I use Temodar again LATER if it worked well the first time? or is it a gun with one bullet?


one thing that comes to mind, is it possible that they overlooked Cyberknife? and does Cyberknife replace radiothearpy at this stage (at least) while keeping chemo on the table along with Cyberknife?

Appreciate the response more info • Age: 35 Years • Weight: 67 Kilos • Height: 1.76 M • General Health: besides issues caused by that tumor, I have no other issues.

RE: Brain Tumor Progression: What's the best next step

by siblingof on Wed Sep 05, 2012 01:16 AM

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Temodar, unlike radiation, is not a gun with one bullet. But tumors can learn to overcome Temodar, so it's a gun with a limited number of bullets. Temodar is a radiosensitizer, ie it enhances the effects of radiation (as well as fighting the tumor in its own right). You talk about four doctors, but were they all neuro-oncologists? If not, take the N-O's opinion over that of the others. If none of 'em were, find an N-O. As for cyberknife, you will have to ask them.

RE: Brain Tumor Progression: What's the best next step

by karynk on Wed Sep 05, 2012 02:46 AM

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I want to clarify - radiation is also NOT a gun with one bullet - my husband has had 2 full rounds of radiation spaced 8 yrs apart.  My husband's tumor is left temporal and frontal lobes, started as an oligo 2 now an oligo/astrocytoma 3. 

a lot of the cyberknife/gammaknife is determined by the size of the tumor and location, it was never an option for my husband.

RE: Brain Tumor Progression: What's the best next step

by rarsie on Wed Sep 05, 2012 03:43 AM

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Hi, My son is now 29 but when he was 25 he had a resection for a Astrocytoma 3 fully awake, not all was removed six weeks of radium. November 2011 another growth which after resecting 95 percent said it was a GBM. Temordol for 7 mths which they said had slowed it down otherwise he wouldnt be here now. A month ago it showed the tumor was growing deeper into the brain, he has it on the right Parietal side. They have just started him on another Chemo CNUU this is the first,  it is only one dose every six weeks. It is only to give him more time. Your call but I would give anything a go at least you have tried it cant hurt you

Regards Sandra 

RE: Brain Tumor Progression: What's the best next step

by siblingof on Wed Sep 05, 2012 01:13 PM

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Karynk, I'm really surprised by that. I did meet a woman who had had full radiation treatments several years apart, but not in the brain. So your husband's is the only case I've ever heard of, and I'm going to continue to think of radiation as a treatment very unlikely to be repeated. Anyway, in this person's case, it sounds like wait and see is still an option and s/he may live to see better treatments become available.

RE: Brain Tumor Progression: What's the best next step

by mbanat on Wed Sep 05, 2012 01:19 PM

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U see that very opinion of waiting and seeing for new development in medicine makes me feel that going for radio and chemo is like doing something that has more effects than just the temp side effects following a few months after, which I think is marginal compared to watching a tumor grow

Am I losing anything else if I go for chemo and radio then wait? 

P.s. I am a male

RE: Brain Tumor Progression: What's the best next step

by dmercer on Wed Sep 05, 2012 03:16 PM

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I would echo the advice about seeing a neuro-oncologist at a major brain tumor center. This also includes seeing a top notch neurosurgeon. There really isn't a clear consensus on what to do with the lower grade gliomas. The key is to understand the implications to the decision you make. Here is a brief rundown of my situation: Oligodendroglioma with deletions. 90% resection right occipitol/parietal lobes Nov 2010. Radiation and chemo Early 2011, one year of chemo. I went all out with all three barrels. The data indicates that this may not necessarily give me an increased overall survival, but would give me a longer progression free survival. Since I have 4 children (grade-school to high school) I went with this approach because I hope to get them raised before a significant recurrence. If this means I have to deal with the effects of radiation earlier, then that was a choice I had to weigh. Also, I have heard of people getting repeat radiation if enough time has passed. Moreover, radiation technology is getting so precise, they can target the tumor area without affecting other parts, unlike whole brain radiation of the past.So , in some ways, the two things that factored into my decision were, (1) Getting the best short-term results so I can get my kids raised, and (2) Hope for new and better treatments in the future, so use what I can now. Every person is different and needs to think through, not only, what is the best protocol, understanding that there is going to be disagreement on this, but also what are my short-term and long-term objectives. Really press your doctors to not just give you their recommendation, but what values are they putting at the top in making their recommendation? (Quality of Life now and later, progression free survival, overall survival, standard published protocol verses experimental protocol verses not quite published yet, but we know is coming).

Wishing you the best in discerning your decision.

Grace and Peace,

Danny   

RE: Brain Tumor Progression: What's the best next step

by mbanat on Wed Sep 05, 2012 03:43 PM

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Thank you for writing

A very good advise well written indeed. One of the best in fact

Survival time (prognonis) after little research practically isn't conclusive.  Age, health condition, diet, emotional pressure are all amongst others many aspects deciding prognosis... yet we tend to lean towards the average when possibilities are considered

 I have learned however that doctors do not like to talk about prognosis ...I get them online only practically and questions remain unanswered. Astrocytoma stage 2, how much is the prognosis with and without the deletions.  Eventually, I do understand thers is w a typical behaviour for cancer to form and grow.  How do we know we just started stage 2 or just about to end it? The answer affects vastly the total survival time...

Slso

RE: Brain Tumor Progression: What's the best next step

by huxley2006 on Wed Sep 05, 2012 03:54 PM

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On Sep 05, 2012 2:46 AM karynk wrote:

I want to clarify - radiation is also NOT a gun with one bullet - my husband has had 2 full rounds of radiation spaced 8 yrs apart.  My husband's tumor is left temporal and frontal lobes, started as an oligo 2 now an oligo/astrocytoma 3. 

a lot of the cyberknife/gammaknife is determined by the size of the tumor and location, it was never an option for my husband.

Karyn,

Always meant to ask was the 2ed radiation treatment in the same spot as the initial treatment or in a different area of the brain? Were they both at max RAD levels?

Hux

 

RE: Brain Tumor Progression: What's the best next step

by karynk on Wed Sep 05, 2012 06:44 PM

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On Sep 05, 2012 3:54 PM huxley2006 wrote:

On Sep 05, 2012 2:46 AM karynk wrote:

I want to clarify - radiation is also NOT a gun with one bullet - my husband has had 2 full rounds of radiation spaced 8 yrs apart.  My husband's tumor is left temporal and frontal lobes, started as an oligo 2 now an oligo/astrocytoma 3. 

a lot of the cyberknife/gammaknife is determined by the size of the tumor and location, it was never an option for my husband.

Karyn,

Always meant to ask was the 2ed radiation treatment in the same spot as the initial treatment or in a different area of the brain? Were they both at max RAD levels?

Hux

 

This is for siblingof - talking to my hubby's new NO - 2nd rounds of radiation are common, but here's the thing....not so common with GBM due to they way they grow, how fast they grow, etc.  So it makes sense that you would not have heard of anyone else getting a second dose.  Over the years I have learned that there really is a different approach to grade 2 & 3 tumors.

 

Hux - Yep - full blast, same exact area and then some, as the original tumor is so involved with the speech area of the left temporal lobe (as is the case with the original poster of this thread).  Seems that the most recent surgery revealed that there is quite a bit of dead tissue in the temporal area now.  But the hubby's brain has been able over the years to move some of his speech around, so although he does suffer from aphasia it's not as extreme as I think most would have expected.

Original poster - while your tumor is smaller, I would hit it with RT and do Chemo as well.  My reasoning - if you have not done either, your bone marrow should be in great shape and you should have few complications.  The goal should be to reduce as much of the original tumor as possible.  That being said, having a grade 2 tumor, I suggest that you take some time before you go into this - most likely 3 months is not going to make a huge difference, even a month - go take a nice vacation first, as you most likely have a year of active treatment ahead of you!  Also, I would investigate the cyberknife/gammaknife and auto Litt procedures to see if that is a possibility for you.  Unfortunately, Grade 2 Astrocytomas tend to become GBMs more often than the type of tumor that my husband has, and they tend to be the more agressive of the type 2 gliomas.

After all these years, my husband's AOA is still only a grade 3.  And still has the most favorable genetic markers.

-Karyn

- hope that helps and doesn't confuse.

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