Temodar experiences

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5/12/2014 4:51am
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Replies: 33

Has anyone taken the chemo temodar? I am specifically taking it via infusion for 5 days ( but I kno you can also take it orally) with a regular dose of ipi and 10 days of full brain radiation. Apparently temodar can get to the brain so they decided to add it to my treatment because of my situation. 

Recently they found leptomeningeal disease in my brain, so basically there is melanoma in the tissue surrounding and protecting my brain and spinal chord.hasnt gotten to the spinal fluid yet which is good, but they did find two small lesions on the bone of my lower lumbar spine :( it's pretty darn serious and I was kicked out of the PD-1 trial I was to start the next week.

So plan B is just trying to be aggressive, hense my agreement to do chemo. I thought I'd be able to skip that stuff, but you can't always get what you want. I've done 4 out on5 infusions so far and haven't noticed many changes, but I kno that side effects often take time to kick in.

i really dontknow what to expect and am not knowledgeable about chemo (temodar especially) and how to take care of myself while on it. My doctors have not been very informative on the subjuct. When they handed me a mask the other day just to walk outside I was very surprised and when I got to see my 2 year old niece 6felt scared to touch or to hold her.

will I lose my hair? When?

i feel ignorant, which I try to avoid when it comes to my health.

Anyone experienced this particular drug and want share some knowledge with me?

.

Thanks for listening

H

Mat - (5/12/2014 - 8:10am)

Hannah, sorry to hear about your situation.  I can't answer your question, but in terms of options--do a search for leptomeningeal disease in this forum.  Within the past few months there has been discussion on this.  Apparently, there is a doctor at MD Anderson who specializes in treating leptomeningeal disease--some sort of specialized IL-2 treatment.

joy_ - (5/12/2014 - 8:23am)

Hannah,

I cannot answer your question in regards to temodar, but my husband has leptomeningeal disease too.  He is being treated at MD Anderson by Dr. Papa with intrathecal IL2.

He is the only doctor in the world who does this treatment.  My husband was given the option of WBR at his previous treatment center, and we were told it was only palliative so we headed straight for MDA.  It is a ROUGH treatment but it has a pretty good success rate & Dr Papa has patients as many as 20 years out with this treatment.  If you want more info please let me know!

joy_ - (5/12/2014 - 8:25am)

Just wanted to add that you have to act FAST though!

Teochasse - (5/12/2014 - 10:17am)

Hannah,

I am sorry for what you are going through,you are way too young and innocent to deal with all of this.Wow.I kind of hoped that someone who had dealt with leptomeningeal disease will chime in soon.Thanks God Jay was so quick to respond. I looked but I could not find the thread where this condition was previously discussed.

I remember that other patients on this board  were commenting that  this  is one very very serious and dangerous disease.It is  agressive and it can go fast. You should be contacting MD Anderson and Dr.Papa as we speak.Please do not waste any time in doing so.You are young and I asssume strong and you have chance to beat this if you get the  treatment as soon as possible.I  also hope you have the full  support from your family to help you get trhough this.

Hugs,

 

Teodora Chasse

POW - (5/12/2014 - 3:03pm)

Oh, Hannah, I am so sorry to hear this! I can't answer your questions about temodar because my brother was too debilitated to take it when it was offered. 

However, as others here have said, Dr. Nicholas Papadopoulos at MD Anderson is the one person who seems to have considerable experience and some success treating leptomenengial melanoma. Lepto is very aggressive, however, so you should contact Dr. Papas ASAP Phone (713) 792-2121.

Aldakota was the last person here to deal with lepto. Here is the thread where people talked about Dr. Papas and MD Anderson. http://www.melanoma.org/find-support/patient-community/mpip-melanoma-patients-information-page/update-aldakota22

Anonymous - (5/12/2014 - 4:33pm)

The direct IL2 experience only prolonged life for someone dear to me for a very short time.  It wasn't worth the grueling experience of it.   Temodar is dacarbazine and not known to do a lot sadly.   Best bet is to move onto PD1 access if you can.  Boosting your immune system is top priority!~!

Anonymous - (5/12/2014 - 4:36pm)

I would go for braf/mek drugs if you can, they have shown to work on the brain.  IL2 and temodar are really old drugs.

joy_ - (5/12/2014 - 4:44pm)

Intrathecal IL2 is definitely not for everyone, but I can say it is saving my husband from leptomeningeal disease.  Disease in the body and brain mets are now the obstacle for him. It is a tough treatment but if you are otherwise healthy and young and asymptomatic that is a big plus.

Dabrafenib is thought to have some effect on the brain, but I don't think will help when you are in the lepto camp.

joy_ - (5/12/2014 - 4:46pm)

Meant to add that intrathecal IL2 is not the same treatment as systemic IL2.  Same drug but an off label use where it is administered via ommaya reservoir directly into CSF.

POW - (5/13/2014 - 8:02am)

Joy, I am delighted to hear that your husband is responding to intrathecal IL-2 treatment! I will pray that he continues to improve and that he finds a treatment to shrink the other mets in his body. Melanoma warriors definitely have options you didn't have 3 or 4 years ago.

BrianP - (5/12/2014 - 9:47pm)

Hannah,

So sorry what you are going through right now.  Prayers coming your way.  Looks like there's been some great info posted above.  Hope you are able to take advantage of some of it.

Brian

Anonymous - (5/13/2014 - 9:57am)

I think Hannah was asking about Temodar and no one responded about it.  It is nothing but a form of dacarbazine that has a low response rate.  I find it disturbing that some of you are pushing her to rush to MDA for an unproven, highly toxic drug regimen. Does anyone remember what Amy went through witht that here? One person responding in one place in their body doesn't prove anything.  So answer the question instead of pushing her somewhere else.

Anonymous - (5/13/2014 - 11:21am)

Amy responded to the intrathecal il-2, but succumbed to other disease.

JerryfromFauq - (5/15/2014 - 7:46pm)

Amy Busby had her LEPT0 cleared up for the last 6 months of her life.  She died because, in spite of being promised re-entry to the BRAF trial if she could get the Lepto cleared, BMS refused to honor their word and let her die from the re-growth of the other internal tumors that were almost removed by the BRAF treatment before BMS said she had to stop the BRAF if she got the intrathecal il-2.  They did promise her re-entry if the lepto was cleared for 2 months.  They failed to keep their word to her and Dr Pappa.  I forwarded all the data from my extensive contacts with Amy to Snickers.   Her husband is started on it last year and is now even her caretaker while she is having other medical problems at present.

 

I'm me, not a statistic. Praying to not be one for years yet.

Teochasse - (5/13/2014 - 3:46pm)

I can not comment   on  Amy ,but I remember that Snickers mentioned that the IL-2 administered through Omaya Port directly to the brain lining is  the only effective  treatment for leptomemingeal disease and NOTHING else really works.We are not pushing anyone here to do anything ,just giving our opinions and  sense of urgency to deal with  a  very serious condition ASAP .You can't mess with this one.By the way all treatments for melanoma are highly toxic and  IL-2 is not an exception.

Teodora Chasse

Anonymous - (5/14/2014 - 7:53am)

There are reports of PD1 working with brain mets as well as braf/mek.  They are not toxic like IL2. Amy and others had very short response times and then relapsed.  Results should be more lasting considering the severity of the treatment.  I just hate to see someone already scared pushed to something unproven. 

Teochasse - (5/14/2014 - 8:31am)

Anti PD1 is still in research phase  and there is still not enough  evidence,if any at all,that  it works on brain mets,lets alone on mets in the brain lining.Meanwhile leptomeningeal disease is highly aggressive and it can go fast,therefore   it should be addressed it ASAP .As evidenced by other patients at this point  the   intrathecal IL2 apparently is the only treatment proven to be effective for this disease.

Teodora Chasse

Anonymous - (5/14/2014 - 8:47am)

Good grief.  Brain mets and leptomeningeal mets are NOT the same thing.

Teochasse - (5/14/2014 - 1:03pm)

Dear Anonymous,that's exactly what I am stating in my post above-that anti PD is not yet quite proven to work on brain mets,let alone on mets in the brain LINING.Next time read carefully,please.

Teodora Chasse

JerryfromFauq - (5/15/2014 - 7:42pm)

So very TRUE.

 

I'm me, not a statistic. Praying to not be one for years yet.

Thank you. You hit the nail on the head

Anonymous - (5/14/2014 - 3:22pm)

And there is absolutely no proof that the MDA approach of IL2 going into the brain is curative, no studies, no nothing.  So it is just as well proven that other less toxic methods are feasible.  But you are not experts here to push someone to something as you have been. You don't know her situation at all and again she asked about temodar NOT IL2 shot into the brain.

Anonymous - (5/14/2014 - 3:23pm)

Yeah when folks push this hard for one treatment and doctor and in one place, makes you wonder who wrote the post!

BrianP - (5/14/2014 - 7:52pm)

I find your post a little ironic based on the statement and the fact you signed it anonymously.

Hanah,

I hope you don't think people are being too pushy.  I think this community just really cares for one another and they are concerned for you.  I also hope those concerns haven't increased your stress level.  Everyone on this site offers advice based on their knowledge and experience.  I think there's few if any here that are doctors and therefore qualified to give medical advice but the information I've received here has been invaluable over the last few years.  When I post something I always hope that people give me as much information, good or bad, as they have and then it's up to me to take that information and do my due diligence.  Hopefully you can do the same with the info presented on this thread so far.

I will say that nearly everyone that posted advice for Hanah posted using their username and nearly everyone that had issue with that advice posted anonymously.  I think that is unfortunate because it often leads to less civility in the post.

I wish you well Hanah and will have you in my prayers as you find a suitable treatment plan.

Brian

Mat - (5/14/2014 - 8:31pm)

Brian, well said--and I admire your restraint.

joy_ - (5/16/2014 - 7:54pm)

Thank you for this post, Brian.  I could not agree with you more.

My intention in sharing my husband experience was only to share information.  I don't appreciate accusations by others here that I am "pushing" something.  Treatment decisions are very personal, and I have found this forum a valuable source of information and experiences.  When anonymous posters try to "silence" regular folks from sharing personal experiences that's when you have to be suspicious.  ;)

I sincerely hope that others with Temador experience will chime in for Hannah and answer her question.

And Hannah, I sincerely wish you the very best in your journey.  God bless you.

joy

paul - (5/15/2014 - 3:45pm)

Hi Hannah,

I took Temodar for a year. Minimal side-effects and some benefit. It helps as many people (@10%) as DTIC with fewer effects.

Good wishes to you.

Paul

 

 

 

 

 

 

 

 

 

If you have time to chatter
Read Books.
If if you have time to read
Walk in the mountains, desert and ocean
If you have time to walk
Sing song and dance
Sit quietly, you happy Lucky Idiot--Nanao Sakaki

Cooper - (5/15/2014 - 5:31pm)

Brian,

 As if the user names are really their names?   I disagree that the intent was well intentioned but instead very pushy for someone in a very scary situation.  Suggesting she pull up stakes and rush to an unproven procedure far from home is not helpful. She asked about temodar and ended up with a lot more she didn't need.  

JerryfromFauq - (5/15/2014 - 8:10pm)

I have not heard reports as to the effects of Temodar on LEPTO,  IN GENERAL, Temodar is considered more pallative than actually curative in MOST melanoma cases.  It has worked for a few.

      Some people are too fearful of HD IL-2 short term side effects and many Doctors have not learned how to administer it.  It must be administered by anhhighly experienced IL-2 Oncologist with a highly experienced staff.   While it is an older treatment, that alone should not remove it from the options.  LEARN about all the options and who has experience with each.

     Some of us are still alive due to the HD IL-2.  I am. I was give 30-180 days in 2007, before I tasked where I could get the IL-2.   I know others that after being a complete responder to HD IL-2 for over 30 months have remained clear of melanoma for over 20 years.  I know of no one that has been a complete responder to HD IL-2 for over 30 months and ever had a re-occurance.

     The death rate from PD-1 in current clinical trials has been about the same as from the HD IL-2 clinical trials 20-30 years ago.  PD-1 so far may have longer term negatives side effects than IL-2.  So far there has been at least a short term, higher positive success rate with PD-1 than any other trial treatment.  It is hoped that one day it will have a cure longivity that approaches that of IL-2. 

Brian made many good points in his post above.

I'm me, not a statistic. Praying to not be one for years yet.

Anonymous - (5/16/2014 - 7:35am)

Jerry, would love to see where you read that PD1 had same death rate as HD IL2 20 years plus ago.  That whole paragraph didn't make sense.  IL2 is very old and 94% of patients DON'T respond to it.  Having it poured into your brain has not been shown to work in any trial.  So again, folks shouldn't force their opinions without lots of evidence.

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