› Forums › General Melanoma Community › Calling for Help: ALL Brain Warriors.
- This topic has 21 replies, 6 voices, and was last updated 12 years, 3 months ago by
nikolaos.
- Post
-
- January 9, 2012 at 12:11 am
11 1/2 mths of Interferon.
now have sub. cm lung nodules that are starting to grow in size.
goin' to MDAnderson for further facts.
Went: not impressed. took over 5 weeks to give me results: I am B-Raf positive. I had to keep calling them.Now been 8 wks. 10-22-10 had another CT-scan:
2- Lung nodule/tumor/lesions around 1.1 cm in size- one on each side of heart (paracardium) in left upper lung.
1- Lung nod/tum/lesion in right lower lung 9mm next to diaphram.
multiple other small "spots" in lungs.Checking on trials and options and blackmarket!!….in the meantime…doing this:
Carboplatin/Taxol/Avistan via local oncologists (similar to Mayo (Rochester) Trial Ph. II Study- but without red-tape).
Had brian MRI- All clear. (11-2-10)
12-2-10: CT scan shows "stable" lung tumors. No shrinkage, but no increase! Biggest 3 still around 1 cm.
1-13-11: CT still stable Lung. BUT… foot twitches, Dr. suggests MRI:
1-26-11: MRI and next day 2nd one reveals 12 lesions in brain plus 1 wierd looking Pons "indentions" of unknown reason.
2-4-11 and 2-7-11: SRS Novalis TS performed on 5 brain tumors.Proceed to WBRad starting 2-14-11: Happy Valentine's Day!
Completed 10 days WBR.Started IPI compassionate use trail aroun 3-1-2011. Took standard regimine of 4 rounds IPI (which became Yervoy during my trial). Finished around 5-5-2011.
Sometime in April/May 2011 had 2 to 4 more SRS zaps (never have gotten straight answer) Radiologists say that's all they can do
Had bad edema in late July treated with steroids .
Started Zelboraf in late August 2011.
Sept. 30 2011 scans show mostly stable brain tumors; Very good regression or dissapearance of lung tumors.Nov.18th 2011 MRI of brain revels exoanding edema is back. weighing options- started taking Temodar 350mg./day /5 days/ every 3 wks. in meantime.
Took only 1 round of Temodar as platelet level got real low AND i have planned SRS (Novalis TS) treatment- and platelets must be OK in case of brain-bleed.After much begging and B.S.; my willing radiologist/neurosurgeon have agreed to SRS 3 relatively small new tumors. Agreed to wait on biopsy of large edema area as general consencess is that it very likely not an active tumor, but necrosis from SRS done back in Feb. or May of 2011. All simulations, mask fittings, and MRI to be done by Jan. 12th 2012. Actual SRS will take place following week.
NOW FOR CURRENT QUESTIONS:
I credit the Yervoy/IPI and possibly beginning Zelboraf 3 mths. ago for my lungs to be almost clear again as of 9-30-2011 and continueing clear now!
PROBLEM: 3 new brain tumors, which they are fixing to SRS, thank God, but a larger "old" area of tumor (aprox. 2 cm x 2.5 cm) . "They" cannot determine whether it is all just necrotic edema or if some live tumor growth . MRI and PET is not decisive enough to make call. AFTER the 3 SRS's, can/ should i get/demand/beg to get a biopsy? At least 1 Dr. said he'd consider it. 2 other Dr. nuerologists/radiologists seem to think i should just take lots more steroids, have "quality of life" , and basically go home and die.
I want to fight with all i can, i also want to consider an Yervoy/IPI re-induction, possibly in conjunction with Temodar and/or other agents. I will also continue Zelboraf (in 4th mth. now) Any advice would be greatly appreciated, as i feel like the Drs. think i'm nuts for wanting to fight with so much ammo. I do realize the odds are not in my favor, but someone has to be an exception. I look at JAG/John and some others on here that continue to hang in there.. Please help me, and keep me realistic while optimistic, if you think its possible.
Thank You with Great Love and Prayers for ALL. Grady.
Brief history:
- Replies
-
-
- January 9, 2012 at 12:23 am
Please scroll down to "Current Questions" part on above post. 1st half of post is just a copy of most of my profile history- so ya'll know what all i've done……and i've skipped some "minor" things- it would take all night!
Thanks & Goodnight- Grady.
-
- January 9, 2012 at 12:23 am
Please scroll down to "Current Questions" part on above post. 1st half of post is just a copy of most of my profile history- so ya'll know what all i've done……and i've skipped some "minor" things- it would take all night!
Thanks & Goodnight- Grady.
-
- January 9, 2012 at 12:23 am
Please scroll down to "Current Questions" part on above post. 1st half of post is just a copy of most of my profile history- so ya'll know what all i've done……and i've skipped some "minor" things- it would take all night!
Thanks & Goodnight- Grady.
-
- January 9, 2012 at 2:01 am
Grady,
Recently following her carebridge site her radiololgist biopsied 2 tumors that they weren't sure if it was an active tumor or necrosis. They found that one area was necrosis and the other tumor behind her eye was active. They did do a crainectomy. Her story sounds fairly familiar to you. If you e-mail me I will send you her caring bridge site.
I know I can tell you that steroids is not quality of life. Also, they are not going to re-introduce the Ippi if you are on the steroids because it hurts the immune system. It's your chance to live the life you want. Ask, beg! I know that I am discussing my nuero and radilogist on the 18th to decide how to get rid of this edema.
Linda
-
- January 9, 2012 at 3:33 am
Grady,
I would be extremely careful of a high steroid dose. I've been on high steroids for about three months. So long story. I just give the highlights. The steroids basically shut my immune system down bad infection, then hospitalized for over two months. There are the issues including paralysis That really steroid involved. Although the steroids were introduced to control the swelling in the spinal cord.
You have to weigh the quality of life. I'm not sure what I would do if I would make the decision over Again.
My only good news is that the spine is remaining stable throughout this whole battle. And the feelings coming back in both legs, which is surprising all of us. There is a good potential that I'll leave therapy and 20 or so days able to be mobile enough to function at home and then fight the rest of this battle with the spine.
I'll keep you in my thoughts and if anything comes across that may help you out, I will pass it along.
Jerry from Cape Cod
-
- January 9, 2012 at 3:33 am
Grady,
I would be extremely careful of a high steroid dose. I've been on high steroids for about three months. So long story. I just give the highlights. The steroids basically shut my immune system down bad infection, then hospitalized for over two months. There are the issues including paralysis That really steroid involved. Although the steroids were introduced to control the swelling in the spinal cord.
You have to weigh the quality of life. I'm not sure what I would do if I would make the decision over Again.
My only good news is that the spine is remaining stable throughout this whole battle. And the feelings coming back in both legs, which is surprising all of us. There is a good potential that I'll leave therapy and 20 or so days able to be mobile enough to function at home and then fight the rest of this battle with the spine.
I'll keep you in my thoughts and if anything comes across that may help you out, I will pass it along.
Jerry from Cape Cod
-
- January 9, 2012 at 3:33 am
Grady,
I would be extremely careful of a high steroid dose. I've been on high steroids for about three months. So long story. I just give the highlights. The steroids basically shut my immune system down bad infection, then hospitalized for over two months. There are the issues including paralysis That really steroid involved. Although the steroids were introduced to control the swelling in the spinal cord.
You have to weigh the quality of life. I'm not sure what I would do if I would make the decision over Again.
My only good news is that the spine is remaining stable throughout this whole battle. And the feelings coming back in both legs, which is surprising all of us. There is a good potential that I'll leave therapy and 20 or so days able to be mobile enough to function at home and then fight the rest of this battle with the spine.
I'll keep you in my thoughts and if anything comes across that may help you out, I will pass it along.
Jerry from Cape Cod
-
- January 9, 2012 at 2:01 am
Grady,
Recently following her carebridge site her radiololgist biopsied 2 tumors that they weren't sure if it was an active tumor or necrosis. They found that one area was necrosis and the other tumor behind her eye was active. They did do a crainectomy. Her story sounds fairly familiar to you. If you e-mail me I will send you her caring bridge site.
I know I can tell you that steroids is not quality of life. Also, they are not going to re-introduce the Ippi if you are on the steroids because it hurts the immune system. It's your chance to live the life you want. Ask, beg! I know that I am discussing my nuero and radilogist on the 18th to decide how to get rid of this edema.
Linda
-
- January 9, 2012 at 2:01 am
Grady,
Recently following her carebridge site her radiololgist biopsied 2 tumors that they weren't sure if it was an active tumor or necrosis. They found that one area was necrosis and the other tumor behind her eye was active. They did do a crainectomy. Her story sounds fairly familiar to you. If you e-mail me I will send you her caring bridge site.
I know I can tell you that steroids is not quality of life. Also, they are not going to re-introduce the Ippi if you are on the steroids because it hurts the immune system. It's your chance to live the life you want. Ask, beg! I know that I am discussing my nuero and radilogist on the 18th to decide how to get rid of this edema.
Linda
-
- January 9, 2012 at 3:47 am
Grady, I feel that it would be wise to consider the following:
1. Discontinue Zelboraf (if your oncologist agrees) because melanoma seems to have figured out how to overcome its effects.
2. Try to have Yervoy reintroduced.
3. Yervoy and IL-2 (interleukin-2) seem to make a good combination when either one is followed by the other.
4. Look at having a biopsy.
5. Aim to reduce steroid dosage if possible.Hope this helps. You are in my thoughts and prayers.
Frank from Australia
-
- January 9, 2012 at 3:47 am
Grady, I feel that it would be wise to consider the following:
1. Discontinue Zelboraf (if your oncologist agrees) because melanoma seems to have figured out how to overcome its effects.
2. Try to have Yervoy reintroduced.
3. Yervoy and IL-2 (interleukin-2) seem to make a good combination when either one is followed by the other.
4. Look at having a biopsy.
5. Aim to reduce steroid dosage if possible.Hope this helps. You are in my thoughts and prayers.
Frank from Australia
-
- January 9, 2012 at 3:47 am
Grady, I feel that it would be wise to consider the following:
1. Discontinue Zelboraf (if your oncologist agrees) because melanoma seems to have figured out how to overcome its effects.
2. Try to have Yervoy reintroduced.
3. Yervoy and IL-2 (interleukin-2) seem to make a good combination when either one is followed by the other.
4. Look at having a biopsy.
5. Aim to reduce steroid dosage if possible.Hope this helps. You are in my thoughts and prayers.
Frank from Australia
-
- January 9, 2012 at 3:55 am
Grady.
My strategy would be this.
Sx on the regrowth w/complete removal if at all possible-look for a really talented surgeon/or one you are comfortable with/knows the inside of your head.
SRS on remaining.
Then IPI-if not available, Zelboraf will buy time(BRAF)
Temodar is/was a waste for me-have not seen many patients on here w/a positive response. Approx 3% cross blood brain barrier. Don't waste time fighting the insurance companies if this is not made available.
Talk to your doctors, make it clear that you are aware of the risks involved and that you would rather take the risk and live than just sit there thinking about dying.
God Bless, Good luck, and continue praying, praying, praying. I will for you too.
John
-
- January 9, 2012 at 3:55 am
Grady.
My strategy would be this.
Sx on the regrowth w/complete removal if at all possible-look for a really talented surgeon/or one you are comfortable with/knows the inside of your head.
SRS on remaining.
Then IPI-if not available, Zelboraf will buy time(BRAF)
Temodar is/was a waste for me-have not seen many patients on here w/a positive response. Approx 3% cross blood brain barrier. Don't waste time fighting the insurance companies if this is not made available.
Talk to your doctors, make it clear that you are aware of the risks involved and that you would rather take the risk and live than just sit there thinking about dying.
God Bless, Good luck, and continue praying, praying, praying. I will for you too.
John
-
- January 9, 2012 at 11:30 am
Greetings,
Glewis since the lung mets seem resolved i would asssume that zelboraf is doing great job! I do not think that it would be valuable at that point to discontinue it. As i understand it melanoma tends to grow in areas where it has the most potential to do so, since zelboraf is in action, brain is the best place concerning it is difficult for drugs to get there. One plan to consider is having a gamma knife procedure to resolve the brain mets and maybe another ipi reinduction. Ipi after zelboraf could be the knock out punch- or in combination with zelboraf if that is possible, i think there are some studies in which they combine the two drugs with guite promising results. .
One other guestion i would like to make is edema symptomatic? If not maybe you can consider not to take any steroids for a while and maybe wait wether it can be resolved by its own. Is not possible to have the largest brain again zapped? As i see its size is not guite big for srs.. I hope every best.
-
- January 9, 2012 at 11:30 am
Greetings,
Glewis since the lung mets seem resolved i would asssume that zelboraf is doing great job! I do not think that it would be valuable at that point to discontinue it. As i understand it melanoma tends to grow in areas where it has the most potential to do so, since zelboraf is in action, brain is the best place concerning it is difficult for drugs to get there. One plan to consider is having a gamma knife procedure to resolve the brain mets and maybe another ipi reinduction. Ipi after zelboraf could be the knock out punch- or in combination with zelboraf if that is possible, i think there are some studies in which they combine the two drugs with guite promising results. .
One other guestion i would like to make is edema symptomatic? If not maybe you can consider not to take any steroids for a while and maybe wait wether it can be resolved by its own. Is not possible to have the largest brain again zapped? As i see its size is not guite big for srs.. I hope every best.
-
- January 9, 2012 at 11:30 am
Greetings,
Glewis since the lung mets seem resolved i would asssume that zelboraf is doing great job! I do not think that it would be valuable at that point to discontinue it. As i understand it melanoma tends to grow in areas where it has the most potential to do so, since zelboraf is in action, brain is the best place concerning it is difficult for drugs to get there. One plan to consider is having a gamma knife procedure to resolve the brain mets and maybe another ipi reinduction. Ipi after zelboraf could be the knock out punch- or in combination with zelboraf if that is possible, i think there are some studies in which they combine the two drugs with guite promising results. .
One other guestion i would like to make is edema symptomatic? If not maybe you can consider not to take any steroids for a while and maybe wait wether it can be resolved by its own. Is not possible to have the largest brain again zapped? As i see its size is not guite big for srs.. I hope every best.
-
- January 9, 2012 at 3:55 am
Grady.
My strategy would be this.
Sx on the regrowth w/complete removal if at all possible-look for a really talented surgeon/or one you are comfortable with/knows the inside of your head.
SRS on remaining.
Then IPI-if not available, Zelboraf will buy time(BRAF)
Temodar is/was a waste for me-have not seen many patients on here w/a positive response. Approx 3% cross blood brain barrier. Don't waste time fighting the insurance companies if this is not made available.
Talk to your doctors, make it clear that you are aware of the risks involved and that you would rather take the risk and live than just sit there thinking about dying.
God Bless, Good luck, and continue praying, praying, praying. I will for you too.
John
-
- You must be logged in to reply to this topic.