› Forums › General Melanoma Community › Jan & Dirk update
- This topic has 24 replies, 10 voices, and was last updated 14 years, 2 months ago by
FormerCaregiver.
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- September 17, 2011 at 1:24 am
We have been on a roller coaster here in Texas. Dirk had surgery to remove the large met in his brain on 8/19. About two weeks later, he had some numbness and swelling on the left side of his face so spent labor day weekend back in the hospital. Has finally seemed to recover from the surgery, but the latest MRI shows that even more brain mets have appeared and the mel is growing very fast throughout his body.
We have been on a roller coaster here in Texas. Dirk had surgery to remove the large met in his brain on 8/19. About two weeks later, he had some numbness and swelling on the left side of his face so spent labor day weekend back in the hospital. Has finally seemed to recover from the surgery, but the latest MRI shows that even more brain mets have appeared and the mel is growing very fast throughout his body.
Saw Dr Papa today and he wanted to start BioChemo right away…but there were no beds available…friday nights are tough! So we will go in tomorrow and start…the combo includes IL-2, Interferon, Cisplatin, Vinblastine and Temodar instead of Carbo. As soon as he is done with that, they want to do WBR to get those pesky brain mets under control.
Dirk is pretty upset. Dr "hinted" that this is our "last resort" treatment. We cannot do the rest of theTIL trial unless his brain mets can be controlled….although the TILS are growing in that little petri dish…so there is still hope!
I don't know if I can even express what I feel, there is so much to deal with…I need any advice to help us get through the next 10 days….
Jan
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- September 17, 2011 at 3:10 am
Oh dear what a rough tratment. But if I read what you wrote correctly, they want the Brain Mets "controlled", before he starts the other treatment. Keep that in mind. Control is a much easier goal. And visualize a little shirnkage while you at it!
Good Luck and much love,
Mary
Stage 3
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- September 17, 2011 at 3:10 am
Oh dear what a rough tratment. But if I read what you wrote correctly, they want the Brain Mets "controlled", before he starts the other treatment. Keep that in mind. Control is a much easier goal. And visualize a little shirnkage while you at it!
Good Luck and much love,
Mary
Stage 3
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- September 17, 2011 at 11:07 am
Jan and Dirk,
Hang in there! Good things happen everyday so keep on fighting. I am always amazed at how people DO get better when things look so dire and this gives me HOPE for us all!
Hugs,
Vermont_Donna, stage 3a, NED
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- September 17, 2011 at 11:07 am
Jan and Dirk,
Hang in there! Good things happen everyday so keep on fighting. I am always amazed at how people DO get better when things look so dire and this gives me HOPE for us all!
Hugs,
Vermont_Donna, stage 3a, NED
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- September 17, 2011 at 12:26 pm
Jan and Dirk,
We are so gla to hear about you as we have been praying and wondering how you are doing? I am so sorry to hear what a bad time you are having. I hope this treatment works and helps with the brain mets also. I will continue to pray for you both. Jan please take care of yourself as well. I posted a question on the board a week ago asking about how you two were doing.
Keep up the fight brave warrior we are rooting for you.
Gene and Judy (loving wife and caregiver)
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- September 17, 2011 at 12:26 pm
Jan and Dirk,
We are so gla to hear about you as we have been praying and wondering how you are doing? I am so sorry to hear what a bad time you are having. I hope this treatment works and helps with the brain mets also. I will continue to pray for you both. Jan please take care of yourself as well. I posted a question on the board a week ago asking about how you two were doing.
Keep up the fight brave warrior we are rooting for you.
Gene and Judy (loving wife and caregiver)
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- September 17, 2011 at 1:14 pm
Gene, Thanks for the kind thoughts. I do not get on this site everyday, lately this disease has kept us pretty busy. I did go back a page and see where you had asked about us. Thank you!
To everyone else, I am grateful for the positive words of support! I have gone back and read other posts on biochemo. I know it is a nasty treatment and want to do everything I can to help Dirk through it. I have also seen some people have positive results, so I am still hoping and praying.
We will be hanging out at MD Anderson for the next 10 days…anyone in the area, just drop me an email…we can trade hugs…or meet for coffee! Starbucks in the cafeteria is my good friend these days!! (oldhippielady50@yahoo.com)
Jan
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- September 17, 2011 at 1:14 pm
Gene, Thanks for the kind thoughts. I do not get on this site everyday, lately this disease has kept us pretty busy. I did go back a page and see where you had asked about us. Thank you!
To everyone else, I am grateful for the positive words of support! I have gone back and read other posts on biochemo. I know it is a nasty treatment and want to do everything I can to help Dirk through it. I have also seen some people have positive results, so I am still hoping and praying.
We will be hanging out at MD Anderson for the next 10 days…anyone in the area, just drop me an email…we can trade hugs…or meet for coffee! Starbucks in the cafeteria is my good friend these days!! (oldhippielady50@yahoo.com)
Jan
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- September 17, 2011 at 1:38 pm
Jan and Dirk, I am saddened to read this. Unfortunately, melanoma tends to become aggressive once the tumour load reaches a certain point. Hopefully the biochemo and WBR will be effective.
I can't offer you any definite advice, except to say that a small number of people have been able to beat the odds and respond to treatment even when things appear to be very serious. Religious faith can also help many people to maintain hope.
Take care
Frank from Australia
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- September 17, 2011 at 1:38 pm
Jan and Dirk, I am saddened to read this. Unfortunately, melanoma tends to become aggressive once the tumour load reaches a certain point. Hopefully the biochemo and WBR will be effective.
I can't offer you any definite advice, except to say that a small number of people have been able to beat the odds and respond to treatment even when things appear to be very serious. Religious faith can also help many people to maintain hope.
Take care
Frank from Australia
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- September 17, 2011 at 4:27 pm
Thanks Frank, I know that Dirk's melanoma has been growing very aggressively in the last month. He wants to blame the steroids from the brain surgery, but I read his scans and it was growing faster even before the surgery. He has put off these aggressive treatments, opting to try the clinical trials first. But now, we have few other options.
I am still hopeful that this will be just what his body needs to fight this. I try to stay strong and positive for my family…but some days this just sucks!
As for religion…I'm gonna say some things that not everyone will like… Everyone we know prays for us…even me! BUT, I am angry, cause prayer doesn't seem to be doing much good! Is it OK to be real angry at GOD??? And I feel like slapping the next person that tells me that "God would not give me more that I can handle". Surely God is not handing out melanoma to see if we are strong!! My "faith" is just a bit shaky right now.
Well, drop that subject…my blood pressure is rising!
Again, Thanks for the kind thoughts,
Jan
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- September 17, 2011 at 4:27 pm
Thanks Frank, I know that Dirk's melanoma has been growing very aggressively in the last month. He wants to blame the steroids from the brain surgery, but I read his scans and it was growing faster even before the surgery. He has put off these aggressive treatments, opting to try the clinical trials first. But now, we have few other options.
I am still hopeful that this will be just what his body needs to fight this. I try to stay strong and positive for my family…but some days this just sucks!
As for religion…I'm gonna say some things that not everyone will like… Everyone we know prays for us…even me! BUT, I am angry, cause prayer doesn't seem to be doing much good! Is it OK to be real angry at GOD??? And I feel like slapping the next person that tells me that "God would not give me more that I can handle". Surely God is not handing out melanoma to see if we are strong!! My "faith" is just a bit shaky right now.
Well, drop that subject…my blood pressure is rising!
Again, Thanks for the kind thoughts,
Jan
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- September 17, 2011 at 8:50 pm
Hi Jan,
I was moved by your comments and wanted to respond to your comments on faith. Yes,I absolutely believe it is okay to be mad at God and wonder why this happens…remember, even Jesus Christ asked "why have You forsaken me?". We may not get an answer and even if we did, we may not like it anyway.
I'll be sending good thoughts your way…they don't have far to travel as we are practically neighbors. 🙂
Jacki
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- September 17, 2011 at 8:50 pm
Hi Jan,
I was moved by your comments and wanted to respond to your comments on faith. Yes,I absolutely believe it is okay to be mad at God and wonder why this happens…remember, even Jesus Christ asked "why have You forsaken me?". We may not get an answer and even if we did, we may not like it anyway.
I'll be sending good thoughts your way…they don't have far to travel as we are practically neighbors. 🙂
Jacki
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- September 18, 2011 at 2:32 am
Jacki, I would just like to agree with your comments. Although this is getting off the topic of melanoma, I still think that there is some relevance when we are facing what may be end of life issues.
I would also like to add that I have found that it is more than ok to be mad at God when things don't make sense to us. Prayer is just a way of communicating on a different level, and I think that God will help us to cope no matter how bad things might get.
Best wishes
Frank from Australia
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- September 18, 2011 at 2:32 am
Jacki, I would just like to agree with your comments. Although this is getting off the topic of melanoma, I still think that there is some relevance when we are facing what may be end of life issues.
I would also like to add that I have found that it is more than ok to be mad at God when things don't make sense to us. Prayer is just a way of communicating on a different level, and I think that God will help us to cope no matter how bad things might get.
Best wishes
Frank from Australia
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- September 17, 2011 at 8:52 pm
Jan, I am so sorry for all you have to go through – I know how diffcult and frustrating it can be. I hang out a lot at the Starbucks too – just happens to be at our hospital, not at MD Anderson.
As husband and caregiver of a someone with melanoma brain mets and mets in her spine and lungs, who has also suffered a stroke, I offer the following, which you may have already considered. While I hope for the best possible outcome for Dirk and you, you also should be prepared for the alternative. At some point, mental capacities due to brain treatment may be diminished. Or the treatment itself can worsen health and hasten end of life. So just make sure you have said all you need to say and won't regret either things you weren't able to say or he wasn't able to comprehend. This doesn't mean you don't do everything you can to make the treatment a success or support him in the best way possible.
I'm in the unfortunate circumstance where the impacts of brain mets and radiation treatments and craniotomy have reduced her cognitive function, and while we are somewhat able to find closure around many things – whilel still fighting the good fight – she regrets very much that she did not do more when she had the mental faculties to do so. This would have been well before the mel hit her brain, but after we knew she was Stage 4 and it was aggressively spreading.
I think sometimes we focus so much on solutions and treatments that we forget the end can come quickly and even before the end, the ability of the person to function somewhat normally can be quite diminished.
My thoughts are with you and Dirk, best of luck.
Nick
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- September 17, 2011 at 8:52 pm
Jan, I am so sorry for all you have to go through – I know how diffcult and frustrating it can be. I hang out a lot at the Starbucks too – just happens to be at our hospital, not at MD Anderson.
As husband and caregiver of a someone with melanoma brain mets and mets in her spine and lungs, who has also suffered a stroke, I offer the following, which you may have already considered. While I hope for the best possible outcome for Dirk and you, you also should be prepared for the alternative. At some point, mental capacities due to brain treatment may be diminished. Or the treatment itself can worsen health and hasten end of life. So just make sure you have said all you need to say and won't regret either things you weren't able to say or he wasn't able to comprehend. This doesn't mean you don't do everything you can to make the treatment a success or support him in the best way possible.
I'm in the unfortunate circumstance where the impacts of brain mets and radiation treatments and craniotomy have reduced her cognitive function, and while we are somewhat able to find closure around many things – whilel still fighting the good fight – she regrets very much that she did not do more when she had the mental faculties to do so. This would have been well before the mel hit her brain, but after we knew she was Stage 4 and it was aggressively spreading.
I think sometimes we focus so much on solutions and treatments that we forget the end can come quickly and even before the end, the ability of the person to function somewhat normally can be quite diminished.
My thoughts are with you and Dirk, best of luck.
Nick
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- September 18, 2011 at 2:23 am
Jan,
I'm so sorry to hear that things are not going as well as hoped, but please, don't lose faith. A famous (at least on MPIP) person once said, that until there is more cancer than person, there is always hope. Please remember that. I cling to that everyday.
Sending a ton of cyber hugs your way…
Maria
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- September 18, 2011 at 2:23 am
Jan,
I'm so sorry to hear that things are not going as well as hoped, but please, don't lose faith. A famous (at least on MPIP) person once said, that until there is more cancer than person, there is always hope. Please remember that. I cling to that everyday.
Sending a ton of cyber hugs your way…
Maria
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