› Forums › General Melanoma Community › Going downhill fast but not without a fight
- This topic has 27 replies, 9 voices, and was last updated 7 years, 5 months ago by
Helping Hands.
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- December 6, 2016 at 11:47 am
2 weeks ago they scanned my stage 3c husband for pneumonia cause of a persistent cough. Didn’t find anything on the scan. Fast forward to a week ago. Hubby has sudden stroke like symptoms. Mild ones but noticeable. Take him to the er and they put him on blood thinners and do a cat scan on the brain. 8 Mets found most over 1 inch. Then an mri of the brain follows and they find 2 additional tumors on the brain stem. Severe brain swelling as well and 2 of the tumors are hemorragic. So they stopped the blood thinners. Get a full body scan CT the next day and it shows both lungs and liver had dozens of tumors too many in fact to count on the preliminary report.They are finishing the last 7 treatments to his groin from his lymph node diagnosis in August for radiation. Then we think it’s on to whole brain radiation and if he survives long enough then they will try a braf inhibitor.
With how fast this has spread – just 2 weeks to have dozens in the lungs, we’ve moved Christmas to 2 weeks early. The family has all come from other provinces to be here with him.
It’s just all so unreal. My love is up and walking and talking and smiling. So happy to have his family here. I fake all my smiles and I’m severely depressed with anticipatory grief. I just want to stay in bed all day. But I can’t and I won’t as there is so few weeks left with my love. We know that when it starts to go downhill it will be quick but I can’t help but wish and live in my fantasy land in my head that none of this is really happening.
Hospital sent him home with nursing care and palliative care and we are engaging with the hospice today.
I see so many strong spouses on this board and I’m amazed at your continued strength. I don’t know where you get it from or how you do achieve it. But kudos to you all for being so strong.
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- December 6, 2016 at 12:46 pm
Shane's wife – my heart goes out to Shane, you and your family. It's just downright awful that you have to experience this during Christmas season, then again there are no parts of the year that it feels much better.
I hope you as a couple end up like a rocket leaving the stratosphere, enjoy every minute with Shane. We will all be reunited and will enjoy the most glorious days for eternity.
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- December 6, 2016 at 12:46 pm
Shane's wife – my heart goes out to Shane, you and your family. It's just downright awful that you have to experience this during Christmas season, then again there are no parts of the year that it feels much better.
I hope you as a couple end up like a rocket leaving the stratosphere, enjoy every minute with Shane. We will all be reunited and will enjoy the most glorious days for eternity.
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- December 6, 2016 at 12:46 pm
Shane's wife – my heart goes out to Shane, you and your family. It's just downright awful that you have to experience this during Christmas season, then again there are no parts of the year that it feels much better.
I hope you as a couple end up like a rocket leaving the stratosphere, enjoy every minute with Shane. We will all be reunited and will enjoy the most glorious days for eternity.
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- December 6, 2016 at 2:09 pm
So sorry. This is just heartbreaking to hear. To me finishing the radiation to the groin is not a priority. Have they said anything about getting him on the BRAF inhibitors ASAP? The Inhibitors can shrink tumors in a matter of days. To me it makes no sense to continue the groin radiation when obviously that is not of concern anymore. I would not want to wait around to start the inhibitors.Someone else will be able to give more advise.
Prayers to you and your husband.
Annie
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- December 6, 2016 at 2:09 pm
So sorry. This is just heartbreaking to hear. To me finishing the radiation to the groin is not a priority. Have they said anything about getting him on the BRAF inhibitors ASAP? The Inhibitors can shrink tumors in a matter of days. To me it makes no sense to continue the groin radiation when obviously that is not of concern anymore. I would not want to wait around to start the inhibitors.Someone else will be able to give more advise.
Prayers to you and your husband.
Annie
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- December 6, 2016 at 2:09 pm
So sorry. This is just heartbreaking to hear. To me finishing the radiation to the groin is not a priority. Have they said anything about getting him on the BRAF inhibitors ASAP? The Inhibitors can shrink tumors in a matter of days. To me it makes no sense to continue the groin radiation when obviously that is not of concern anymore. I would not want to wait around to start the inhibitors.Someone else will be able to give more advise.
Prayers to you and your husband.
Annie
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- December 6, 2016 at 2:37 pm
Dear Shaneswife,
you should start braf inhibitors asap, they work super quickly to knock down the tumor burden, do brain radiation and then find some therapy that will work….
I would not give up treatment just yet, you just have to act quickly (like TODAY) and give it a chance….
I will keep you in my prayers….
Love,
Patrisa
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- December 6, 2016 at 2:37 pm
Dear Shaneswife,
you should start braf inhibitors asap, they work super quickly to knock down the tumor burden, do brain radiation and then find some therapy that will work….
I would not give up treatment just yet, you just have to act quickly (like TODAY) and give it a chance….
I will keep you in my prayers….
Love,
Patrisa
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- December 6, 2016 at 2:37 pm
Dear Shaneswife,
you should start braf inhibitors asap, they work super quickly to knock down the tumor burden, do brain radiation and then find some therapy that will work….
I would not give up treatment just yet, you just have to act quickly (like TODAY) and give it a chance….
I will keep you in my prayers….
Love,
Patrisa
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- December 6, 2016 at 2:52 pm
Please know that you too are pretty strong even when you feel anxious and depressed (both are completely normal feelings in this situation). I can't even imagine how hard this has been but know that you are being a wonderful advocate for your husband, nothing is stronger than that. I'm sorry you have to go through this and I'm praying for a quick turnaround. I would agree with other posters that it seems like they should do the BRAF inhibitor ASAP.
Many hugs to you, your husband, and family.
Jackie
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- December 6, 2016 at 2:52 pm
Please know that you too are pretty strong even when you feel anxious and depressed (both are completely normal feelings in this situation). I can't even imagine how hard this has been but know that you are being a wonderful advocate for your husband, nothing is stronger than that. I'm sorry you have to go through this and I'm praying for a quick turnaround. I would agree with other posters that it seems like they should do the BRAF inhibitor ASAP.
Many hugs to you, your husband, and family.
Jackie
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- December 6, 2016 at 2:52 pm
Please know that you too are pretty strong even when you feel anxious and depressed (both are completely normal feelings in this situation). I can't even imagine how hard this has been but know that you are being a wonderful advocate for your husband, nothing is stronger than that. I'm sorry you have to go through this and I'm praying for a quick turnaround. I would agree with other posters that it seems like they should do the BRAF inhibitor ASAP.
Many hugs to you, your husband, and family.
Jackie
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- December 7, 2016 at 5:20 am
My heart goes out to you and Shane. I too support asking about moving BRAFi to the frontline. Adriana was esentially bedridden and in severe pain due to LMD and within 5 days of restarting Taf/Mek she was pain free and up and about giving her a chance to try the "next combination." Best wishes. Keep smiling, enjoy life, enjoy each other, make memories. There will be bad moments of sadness, accept those and then bring in the happiness, embrace each other and make the most that you two have together now.
Rob.
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- December 7, 2016 at 5:20 am
My heart goes out to you and Shane. I too support asking about moving BRAFi to the frontline. Adriana was esentially bedridden and in severe pain due to LMD and within 5 days of restarting Taf/Mek she was pain free and up and about giving her a chance to try the "next combination." Best wishes. Keep smiling, enjoy life, enjoy each other, make memories. There will be bad moments of sadness, accept those and then bring in the happiness, embrace each other and make the most that you two have together now.
Rob.
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- December 7, 2016 at 5:20 am
My heart goes out to you and Shane. I too support asking about moving BRAFi to the frontline. Adriana was esentially bedridden and in severe pain due to LMD and within 5 days of restarting Taf/Mek she was pain free and up and about giving her a chance to try the "next combination." Best wishes. Keep smiling, enjoy life, enjoy each other, make memories. There will be bad moments of sadness, accept those and then bring in the happiness, embrace each other and make the most that you two have together now.
Rob.
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- December 7, 2016 at 1:31 pm
Thank you all for your support. It means a lot during these trying times. The doctor added a prescription for medical Marijuana to ease the nausea and anxiety. We’re grateful to have a progressive doctor. Whole brain radiation starts next week. 10 sessions. Then as far as we know he’s starting a braf+mek inhibitor combo. On a side note, I found a sub q met on his back today that just sprung up. I know that they have have have to treat the brain first and pray that the rest holds out until treatment can start January 3rd. But I tell ya it’s very frustrating all this waiting. -
- December 7, 2016 at 1:31 pm
Thank you all for your support. It means a lot during these trying times. The doctor added a prescription for medical Marijuana to ease the nausea and anxiety. We’re grateful to have a progressive doctor. Whole brain radiation starts next week. 10 sessions. Then as far as we know he’s starting a braf+mek inhibitor combo. On a side note, I found a sub q met on his back today that just sprung up. I know that they have have have to treat the brain first and pray that the rest holds out until treatment can start January 3rd. But I tell ya it’s very frustrating all this waiting.-
- December 9, 2016 at 2:00 am
I am so sorry, I never know what to say to people going through a horrible, trying time. I just wanted to tell you that my heart goes out to you and your husband and I hope better times are in your futures. I hope it gives you some consolation to know that myself and all of the others here reading your posts are thinking of you and your husband and wish the best for you both. HUGS
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- December 9, 2016 at 2:00 am
I am so sorry, I never know what to say to people going through a horrible, trying time. I just wanted to tell you that my heart goes out to you and your husband and I hope better times are in your futures. I hope it gives you some consolation to know that myself and all of the others here reading your posts are thinking of you and your husband and wish the best for you both. HUGS
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- December 9, 2016 at 2:00 am
I am so sorry, I never know what to say to people going through a horrible, trying time. I just wanted to tell you that my heart goes out to you and your husband and I hope better times are in your futures. I hope it gives you some consolation to know that myself and all of the others here reading your posts are thinking of you and your husband and wish the best for you both. HUGS
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- December 10, 2016 at 11:12 am
I feel all of what you are going through and have no answers as I am new to this board and new to the Melanoma world. With that being said I appreciate all the feedback that is given on this board and you will find inner strength that you didn't even know was there. Lots of hugs and prayers for you all.
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- December 10, 2016 at 11:12 am
I feel all of what you are going through and have no answers as I am new to this board and new to the Melanoma world. With that being said I appreciate all the feedback that is given on this board and you will find inner strength that you didn't even know was there. Lots of hugs and prayers for you all.
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- December 10, 2016 at 11:12 am
I feel all of what you are going through and have no answers as I am new to this board and new to the Melanoma world. With that being said I appreciate all the feedback that is given on this board and you will find inner strength that you didn't even know was there. Lots of hugs and prayers for you all.
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- December 7, 2016 at 1:31 pm
Thank you all for your support. It means a lot during these trying times. The doctor added a prescription for medical Marijuana to ease the nausea and anxiety. We’re grateful to have a progressive doctor. Whole brain radiation starts next week. 10 sessions. Then as far as we know he’s starting a braf+mek inhibitor combo. On a side note, I found a sub q met on his back today that just sprung up. I know that they have have have to treat the brain first and pray that the rest holds out until treatment can start January 3rd. But I tell ya it’s very frustrating all this waiting.
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