inkedup
Pearl Clutcher
Posts: 4,837
Jun 26, 2014 5:00:26 GMT
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Post by inkedup on Aug 24, 2021 16:10:27 GMT
DH has several bone metastasis. He had radiation treatment for them and has no pain. They have not grown since the radiation. As always, wishing the best for you both. This sounds very hopeful. Thank you for sharing. DH has this new bone cancer (confirming it after his Friday biopsy), and his liver cancer prognosis is pretty grim. I guess the chemo will try to keep both at bay. I hope so! xo My heart goes out to you. I so wish I were near enough to come help out. Do you have an Amazon wish list or is there any other way we can help out? You're an important, loving, beloved member of the pea family. Our collective hearts are hurting for you. |
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Deleted
Posts: 0
Nov 23, 2024 19:18:13 GMT
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Post by Deleted on Aug 24, 2021 16:13:16 GMT
Big ((((hugs)))) to you both. You are a great support to Gary but please also look after yourself .
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Deleted
Posts: 0
Nov 23, 2024 19:18:13 GMT
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Post by Deleted on Aug 24, 2021 16:14:56 GMT
inkedup, jenjie mentioned some things she was trying to put together because several Peas were asking. I'll work on an Amazon list. Thank you and thank you for your sweet words. xo
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Post by gizzy on Aug 24, 2021 17:20:08 GMT
I'm so sorry it wasn't better news. The time from when you get the news and treatment begins is hard. I'll keep you both in my thoughts.
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Post by papersilly on Aug 24, 2021 17:31:38 GMT
i'm sending you positive thoughts and wish you continued strength.
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Post by MichyM on Aug 24, 2021 17:33:38 GMT
Sending warm and positive thoughts and lots of hugs to you both.
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Post by jenjie on Aug 24, 2021 17:49:00 GMT
inkedup, jenjie mentioned some things she was trying to put together because several Peas were asking. I'll work on an Amazon list. Thank you and thank you for your sweet words. xo I started a new thread here 2peasrefugees.boards.net/thread/123777/supporting-bergdorfblondeFeel free to peamail me for her address! So sorry for the delay in getting my own gift out, it’s crunch time for DD’s wedding! |
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Post by workingclassdog on Aug 24, 2021 17:50:52 GMT
Awwww hugs and prayers once again...  |
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Post by anniefb on Aug 24, 2021 18:45:35 GMT
I'm sorry. Sending positive thoughts and prayers.
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Post by Baseballmom23 on Aug 24, 2021 20:17:01 GMT
(((hugs))) and I am praying for you, DH and your DD.
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Post by tenacious on Aug 24, 2021 20:35:46 GMT
I am so sorry that you and your DH are going through this. It sounds like your doctor is doing the right things.
Regarding the spots on his liver (as a reminder, my mom has been with living with NETS for 10 years), spots on the liver are very common for NETS patients, and can be very slow growing and not necessarily fatal. But, a primary NETS tumor in the liver would be extremely rare, so I would be curious to get to the bottom of that!
Traditional chemo is also not a typical treatment for NETs. I know it is hard to kind of come to terms with, but, NETS is a rare and very different type of cancer. The traditional cancer protocols and prognoses don’t always apply. Access to a NETs specialist is very important.
I hope and pray for the best possible outcomes for you all, and hope you are able to take good care of yourself, as well.
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Post by jmd74 on Aug 24, 2021 21:55:21 GMT
I’m so sorry. I hope he gets the care he needs.
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Post by auntiepeas on Aug 24, 2021 22:04:22 GMT
I’m thinking of you both and sending up prayers 💚
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Deleted
Posts: 0
Nov 23, 2024 19:18:13 GMT
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Post by Deleted on Aug 24, 2021 22:32:06 GMT
I am so sorry that you and your DH are going through this. It sounds like your doctor is doing the right things. Regarding the spots on his liver (as a reminder, my mom has been with living with NETS for 10 years), spots on the liver are very common for NETS patients, and can be very slow growing and not necessarily fatal. But, a primary NETS tumor in the liver would be extremely rare, so I would be curious to get to the bottom of that! Traditional chemo is also not a typical treatment for NETs. I know it is hard to kind of come to terms with, but, NETS is a rare and very different type of cancer. The traditional cancer protocols and prognoses don’t always apply. Access to a NETs specialist is very important. I hope and pray for the best possible outcomes for you all, and hope you are able to take good care of yourself, as well. Thank you so much for the information. I do remember about your mom. I was trying to learn all I can about NETS and then this bone cancer popped up, so I'm thrown off.
As far as DH's liver results, he has 2 "small but highly aggressive lesions" and they saw the huge hemotoma, but his hospital stay proved that it was a lot of blood pooled in there, post-liver biopsy. Not sure if it's common with patients on blood thinners. He stopped them 3 days prior to that biopsy and 3 days post biopsy, but he CLEARLY remembers the surgeon really leaning on his liver area to try to stop that bleeding and they were having a hard time stopping the blood. He was in recovery for a very long time.
His Oncologist now specializes in NETS cancer, so I'm pretty sure she's on the right path and we don't know all of the answers yet. She also thought that if it's NETS that it began either in his pancreas, lungs or kidneys, but they didn't show up on the PET scan. The next PET scan is a CU64 DOTATATE scan which evaluates neuroendocrine tumors specifically. That'll be next Thursday. She'll get a clearer picture and hopefully get enough tissue with the bone biopsy to check again for signs of NETS.
One more thing, from the bladder biopsy test and study (which took over 2 weeks for us to see) they didn't have enough tissue to do more NETS testing, which is why she's not 100% convinced of anything right now. She did say that on the scale of the liver cancer being aggressive, he scored 80%. Left untreated, she said he only had until Christmas. That's why I hope they do these tests and get him right on the correct cocktail of chemo. This has gone on long enough and it's on his mind daily.
Thanks again for your feedback. I hope that your mom continues on this good path! xo
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Deleted
Posts: 0
Nov 23, 2024 19:18:13 GMT
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Post by Deleted on Aug 24, 2021 22:33:43 GMT
inkedup , jenjie mentioned some things she was trying to put together because several Peas were asking. I'll work on an Amazon list. Thank you and thank you for your sweet words. xo I started a new thread here 2peasrefugees.boards.net/thread/123777/supporting-bergdorfblondeFeel free to peamail me for her address! So sorry for the delay in getting my own gift out, it’s crunch time for DD’s wedding! Thank you SO much for doing this. You are a dear friend and I adore you. Best of luck with the wedding!! Can't wait to see pics! xoxo |
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hutchfan
Drama Llama
Posts: 6,599 
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Post by hutchfan on Aug 24, 2021 23:07:01 GMT
Saying prayers.
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Post by baslp on Aug 24, 2021 23:15:44 GMT
Hope you get more info after the next tests. Take care and be kind to yourself.
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Post by LavenderLayoutLady on Aug 24, 2021 23:16:12 GMT
So, so many hugs.
I'm so sorry he got those results.
But... One day at a time.
Let us, your pea family, know how we can help you. I'm glad you're putting together an Amazon list. be sure to add things that give you a moment of joy, relaxation, or respite, even if just for a moment.
You are a wonderful lady, and have a whole lot of people standing behind you, lending you our strength, on this journey.
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Post by lucyg on Aug 24, 2021 23:21:48 GMT
Good luck to him on this journey. I’m glad the doctor thinks his life expectancy shouldn’t be affected. Be sure and take care of yourself while you care for him.  |
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Post by scrappintoee on Aug 24, 2021 23:25:39 GMT
@bergdorfblonde...I saw this cute pik and thought it'd make ya smile!  I just HATE that you and your very-loved and well-taken care of hubby are having to deal with MORE bad news! (( hugs ))  P.S....Re: the Netflix/ Prime thread about the documentary about New York ("yawk"  ) accents. I'm sure I'd get a kick out of both your Long Island and your DH's Brooklyn accents, and how they differ. I can *sometimes* tell Brooklyn versus Bronx vs. Long Island, etc. Aside from the interesting origin of the accents, it was sad when people spoke about how different NY is now. One guy said (paraphrasing) "the artists and writers used to live here, but now, they can't afford it, and neither can we !" I saw on a recent thread where you explained why you and DH cannot move back, and it broke my heart. I know you miss your hometown, and I'm really sorry you feel stuck in Florida!  You already know you and DH are on my prayer list. Aside from alllllll the health issues, I've also asked God to get you back to NY, where all your families are! (not to mention, the knishes and OMG---New York PIZZA is the best, (I've only been once, a million years ago, but I still remember the PIZZAAA!!! ) annnd---bagels, of course!)  |
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Post by scrappintoee on Aug 24, 2021 23:32:25 GMT
MANY (( hugs )) to everyone here who has dealt with this horrible disease, and/or seeing a loved one go through it !!!! |
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Post by leftturnonly on Aug 24, 2021 23:55:54 GMT
 {{{Hugs}}} - I just can't think of anything to say. |
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Deleted
Posts: 0
Nov 23, 2024 19:18:13 GMT
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Post by Deleted on Aug 25, 2021 0:59:38 GMT
scrappintoee : That P.S. made me smile!!!!!!! I did see your post about those NY suggestions and I wrote them down for DH, but I told him to wait to watch it with me! Thank you so much. ITA about getting back to NY. He's been wanting to move back for a while now, and I've wanted to since the day we moved here. Thank you for those prayers. xoxo
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Post by cakediva on Aug 25, 2021 1:12:49 GMT
(((Hugs)))
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Post by Alexxussss on Aug 25, 2021 1:29:49 GMT
Thinking of you and your husband. Sending hugs, prayers and positive, healthy vibes!  |
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kate
Drama Llama
Posts: 5,597
Location: The city that doesn't sleep
Site Supporter
Jun 26, 2014 3:30:05 GMT
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Post by kate on Aug 25, 2021 1:50:57 GMT
Praying for strength and peace of heart for you, and some good news for your DH. Y'all are overdue. |
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Post by marie on Aug 25, 2021 3:16:16 GMT
Sending hugs and prayers
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AmeliaBloomer
Drama Llama
Posts: 6,842
Location: USA
Jun 26, 2014 5:01:45 GMT
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Post by AmeliaBloomer on Aug 25, 2021 14:04:33 GMT
I’m so sorry. Please know this community is always here for you as you and your husband walk this road together,
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Post by refugeepea on Aug 25, 2021 15:40:58 GMT
((Hugs)) to you. I'm so sorry!
And with all due respect, that is your brother and I'm sure he is well aware of his BIL's medical history! I'm sorry you were treated that way. I'm sure the message wasn't left in an accusatory tone to the Oncologist.
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Post by drummergirl65 on Aug 25, 2021 18:34:27 GMT
I'm so sorry to hear this. This all sounds so overwhelming. Please take time for yourself, even if it's just 5 minutes doing deep breathing exercises to de-stress. Are there any supports available to you? Like volunteer programs? Where I am, there are programs available to help with driving people to appointments etc.Maybe churches in your area (help with getting groceries delivered?)
You just have so much on your shoulders. {{{HUGS}}}
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I just HATE that you and your very-loved and well-taken care of 
) accents. 
{{{Hugs}}} - I just can't think of anything to say. 
