Bone Mets Thread
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Hi Lynne , Deanne and Linda and everybody else. Whew my doctors office was able to get me a grant of $5000 from Patient Advocate Foundation which should be enough for two and a half months of Abraxane. And I can renew after it runs out. The only bad news is that since I skipped today's appointment they don't have anything available until Friday next week so another week without treatment. Hoping the beast is still dormant.
Thanks for the support.
Aurora
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Aurora, I am so glad that your doctor's office was able to find that grant for you. The system is not easy to maneuver through, that's for sure. It is unfortunate that you have to wait another week for treatment, but hopefully, Abraxane will be effective, and the brief delay will have no impact whatsoever.
Hugs from, Lynne
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Auroaya, Great news in getting some money to move forward with your treatment.
Lynne, How is your husband? I thought of you when my dh and I went back for his 6 month cancer check. We were just commenting that between the 2 of us it seems we are always at a medical appt., having a scan, or at the cancer center. They tease us and tell us they should name a wing after us! I'm sure you have felt the same way sometimes.
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You ladies are all in my heart , my iPad doesn't work well anymore(need a new one) so typing is difficult. I do read all of your comments and am thankful for your kindness. Nobody else gets it like you ladies😌. Lulubee your sense of humour sounds like it's a real asset. I need to start looking at things in this light. 50sgirl I'm think I'm going to have a big fight with the pharma company from the trial. Aurora I'm so happy that you got the grant. Canada is a bit of a drama with getting approved as we'll. Okay. iPad died.....Ill have to check back
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Hi Lindalou, How was your dh's 6 month check? I hope he got good news. I know what you mean about spending all your time with doctors! My calendar is chock full of appointments. My DH was completely back to normal until 2 weeks ago when we thought he had some sort of virus. It turns out that his common bile duct was blocked again, so he went to Boston for a procedure to have a stent put in...again. During the procedure they discovered that he had a stricture in the duct, probably a result of last year's stents and infections and procedures. The stricture prevented them from putting in a stent because the bile duct was completely closed off. They also discovered a fistula which was sending bile directly into the duodenum. That fistula probably kept him from getting very ill because it prevented the bilirubin count from going sky high. He was admitted to the hospital for more tests and a possible additional procedure. The next morning all his liver and pancreatic blood tests were back to normal. The human body is amazing. He needs surgery to bypass the bile duct and close the fistula, but that will probably be done next month after our trip to Florida. He has another appointment with the surgeon next week to discuss dates. Looking at the silver linings, there are 2 of them - 1. The fistula that developed is keeping him healthy 2. The only available private room (he needed a private room because he contracted multi-resistant bacteria in the hospital last year, not mrsa though) was on the urology floor. That is where he spent months last year, and it was like old home week. He felt great so all the nurses and aides spent their breaks in his room catching up on things. They told him to request that floor when he goes in for surgery. Lol. Sorry for the long message. He feels great again now, but he is likely to have more flare-ups and could eventually get infections or even sepsis. He had enough sepsis last year, thank you.
Lynne
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Hi Lynne,
Sorry about the snow - although it can be beautiful, it's also a pain in the butt. We're way below average in our snow this year. I hope it doesn't mean we're due for a dumping in March or April.
No scan yet - I think my onc is planning on March - that will have given me close to four months on X. Thanks for asking.
Had a duel birthday party tonight. My granddaughter, Ellie turned 6 and my new son-in-law who will forever have to share his birthday with her, turned 34. It's hard to decorate for such a diverse pair so I gave up trying to figure it out and went with a cowgirl/cowboy theme. It ended up working quite well. Both were delighted.
Have a great weekend all -
Amy
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Lulubee you will be in my prayers. You've been through so much and you still have a positive attitude. I really admire that.
I'll be thinking of you all tonight. Many hugs.
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Thread is moving fast. Reading everything. Thinking of everyone. I think we all need to kick back and enjoy a nice weekend. Make it count!
>Z<
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Patti, thinking of you. Hope your are at peace and pain free.
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Ladies we had a girl on a trial here in Melb immunotherapy on a trial where they take the blood out change it so the cells can hunt out cancer cells (which hide from our immune system) and 3 months later she was cured of breast cancer mestisized to the bones . Peter Mac hospital in Melbourne have just been given several million dollars in grants to further develop the drug
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Wow I've missed a lot. Been crazy busy planning my dd wedding on 4/2 She got engaged about 2-3 weeks ago and there's so much to do. Her fiancé is from France and she lives there p/ t and he has a religious family which even complicates everything further. But doing this is so great for me. I am forgetting about bc for a little while! My dd and I had dinner Monday night after seeing a band and she was so sweet. She started crying when she thanked me. She said she's afraid the wedding planning is exhausting me and she worries it's too much. I explained to her it's my joy to help. My mom died from bc the year before I met my husband and planning a wedding wo her was so hard. I am just thrilled to be here!!!! I'm on my 3 weeks on Taxol and 1 week off. Scans last month were stable I just hope and pray I am here for when she has a baby which is tops on her to do list!
I hate to read what so many of you are going through now. Lulubee hopefully the next treatment will get you back to NED. Aurora I'm glad you got that financial assistance- you don't need additional pressure now! Lynne- wow your DH has been through so much!!!! Hope things improve quickly after his surgery and no more bumps in the road! Amy - great idea for the cake! Linda glad your DH is doing well at 6 mos. Z your help and knowledge amazes me and Patti. Today is planned as your transition day wishing you peace and love as you go
Bab
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Lubulee, you have a wonderful sense of humor!!!!! Sometimes all you can do is laugh, the best medicine...lol...
Blessings and love
Diane
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lulabee, you make me laugh even though what you have gone through is definitely not funny! Ian so sorry you are dealing with all this! It just isn't fair! I pray you get answers soon.
Wendy I am sorry you have progression also. I hope you get to start ibrance. That is not right what is happening!
I'm glad a grant was found for you aurora!
Babs, I am so happy you get to enjoy this special time with your daughter! It makes me smile thinking how wonderful it is for you.
Prayers for your husband Lynne.
Z, thanks for the video about dry brushing! Interesting! I have also read jumping on a trampoline moved the lymph system. I don't know about that, I pee my pants when I jump lol!!!
Patti, I think of you often and I pray if today is still the day that it is a peaceful day for you! Loved reading your posts for the time I've been on these boards. You are an amazingly strong woman. I admire you!
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Delvzy - this is great! Thanks for sharing. I am watching out for more info as it is available.
Aurora- yes! Amazing what money people can find. I am glad your doctors office found a solution.
Ladies with the progression- I am crushed to hear this. Hopefully you guys get back on track soon.
Lulubee- you do have a way with words! So funny. Hopping things turn around soon. You have been through a lot. A piece of your story reminds me of mine a little. I have actually heard the doctor say, "I have never seen this before" (what!?!!) I have small subcutaneous lesions on my scalp and chest area, that you can see and feel. But NONE of the scans are picking them up. So apparently they are just fancy and too good to show up on scans lol. (Which is scary)
Lita and everyone who have upcoming scans - keeping positive thoughts for great/stable results. Boring! As Z put it.
Patti - you are on my mind today. After so much rain, today is a beautiful day. I am wishing you peace and comfort.
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Babs, It is heart-warming to hear about the wedding planning you are doing with your dd. It must be exhausting to accomplish so much in a relatively short time. I can't wait to see pictures. April 2 will be here before you know it. Is it going to be a big wedding?
Delvzy, That is wonderful news about the women's results in the clinical trial. Do you know if the person who was in the immunotherapy trial was HR+? I had heard that there hadn't been as much success with immunotherapy for HR+ women, but I am sure that will change.
My dh is actually doing well, and I didn't mean to give the impression that he is seriously ill right now. He had a terrible experience with complications after surgery for kidney cancer last year, but now, other than this bile duct issue, his only issues are mild/moderate chronic kidney disease (which needs nothing except monitoring) and having to be scanned every 6 months to look for recurrence of cancer. I know his surgery will be complex, but he has a good surgeon, and I hope that it will go well with NO complications. Right now he feels great. I do appreciate your concern and prayers. Truth be told, I will be a big nervous mess as we get closer to the surgery date, but I will try not to let him see that.
Like many of you, I am thinking about Patti today. Her strength, sense of humor, and attitude are inspirations to me.
Lynne
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Delvzy - Any specific information about the breast cancer patient would be great. I've found general information about the CAR-T program in Australia. Seems they are working with Juno laboratory. Great Stuff.
Babs - Thanks for checking in. A big wedding is just what you need to take your mind of cancer get better.
Patti - you are in my thoughts today.
>Z<
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Patti is supposed to be drinking the "potion" at 3 pm Pacific Standard time this afternoon. I'll be keeping her in my thoughts and prayers for a pain-free peaceful transition.
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I wish we would hear from her one last time but that's probably asking too much - wishing you well Patti. Our thoughts and prayers are with you.
Thank you for sharing so much of yourself with us these last few months. You truly have been a gift.
Amy
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Sorry to intrude, but just wanted to say that Patti has made her transition. My thoughts go out to her family and friends and anyone here at BCO who was close to her. Looks like she transitioned a little earlier on the 9th. Here is a link to her obit.
http://www.legacy.com/obituaries/theoaklandpress/obituary.aspx?page=lifestory&pid=184098793
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Mara: Thanks for letting us know that Patti has transitioned. It is sad but feel relief for her and friends.
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Thank you Mara. Patti you are inspiration for me. We're debating a death with dignity bill here in New Mexico right now. Hope it passes. It will be good to have the option if I need it.
>Z<
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Thank you so much Mara. She ended her life exactly as she wanted to. I'll sure miss her. RIP Patti.
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Thank you for letting us know, Mara. I will miss Patti's wit and strength, but I am happy that she was able to leave this life the way she wanted to. Peace to Patti and my sympathies to all her friends and family.
Lynne
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I am sad to hear about Patti's passing, but at the same time we should take comfort that she is no longer suffering. What a strong, brave woman she was. My heart goes out to her family and friends.
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Mara thank you for letting us know! I watched Patti's living memorial awhile back and what an incredible woman she was! Her sense of humor through all of it was nothing short of amazing. Rest in peace Patti, you will be missed!
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Patti. May you Rest In Peace!!! We here will miss you!
Bab
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Thank you, Mara, I echo everything that has been said here already. I am glad that you are now at peace, Patti. You were such an inspiration to me and you will be missed. Thank you.
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Patti you did it your way! That's for sure. Lucky, lucky. Such grace. Started watching the memorial, that is how it should be. Good for you, Patti. Mara thx for sharing.
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Wendy wow, that's just crazy? Are they going to snap it? Do they take your markers? Was it going up? Supposedly it's good that your son is aware of his feelings, instead of using anger only etc.., no words? What can you tell him?
Wendy I don't understand, you had that in writing? The clinical trial people told you, you could count on getting the drugs and now you are not? So what is the plan?
LindaE you are just kidding me??That's insane! I can only imagine the shock. Did you feel a/t there? What's the plan? How are you?
Lulubee you are so special in sharing with us, the cake I am talking about. Lulubee is there any way you could call the office and they will send you the results from the scans? Maybe to your primary, and he could give it to you?
Lulubee I don't know how I could still laugh, and you brought it out. True, sister, true. DD's way, someone I know that has an inkling about Dani asked what's going, I looked at her speechless, and said with a straight face – How much time do you have? There is no way in this life, she could possibly gasp what D is going through. And then we talked about the weather.
Agp I know such news could really mess with your head. When will you have the biopsy?
Aurora that's so insane, Abraxane is another tx my daughter was on, it's supposed to be pretty good. What a relief they are helping you out. Best of luckBabs that is the best treatment!! Oh my gosh, time is gonna fly. Enjoy, how wonderful that you are so involved in it.
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I honestly don't know where to start. So we were busy the last week of January freaking out that DD has a herniated disk below T1 etc…, anyway the guy we were sent by Onco said no Kyphoplasty we should go to a different surgeon that he will do probably fusion and when we asked if it could be radiated he said he will speak to RO. In the interim I was trying to get an appointment with other surgeons, because this surgeon that first surgeon recommended for me seems quite youngish. Anyway. She has numbness in the hand, and pain some parts of the upper back.
RO said no radiation just surgery, only by reading the report, radiation not recommended, thinking it's a herniated disk.Got another opinion from a different RO, he gave one look at the Images and said it's NOT a herniated disk but a lesion between T1/T2 (aside from all the other lesions on the vertebraes). I asked him to call D's RO , he did and then she said well Radiologist made a mistake, yes, indeed AFTER looking at the Images she now sees it's a lesion. WRONG reading of Images. he report was wrong! OOPS!!!! YES, for real!!!
The thing is, that she had Rads to that area already, so at first she did not want to really radiate, but she will but it will be of a lesser value.
In the meantime, D was out of sync the rest of the week, her WBC and ANC and HGB had literally bottom out, she ended up in the ER on Friday, but things stabilize because I asked Onco for Neulasta, instead of Neupogen she was taking before, so she went to the office on Thursday, and by Friday at the ER it was getting better.
Now this week we will find out if she could continue with her treatment. And they wanna do in the future surgery to the vertebrae that is 50% eaten up, but I don't wanna use the young Neuro that saw her and it will be an issue I know, for a more senior Surgeon that I want to be able to see her. It's bad enough when it's not in the same Center, Hospital but if it is, they have all kind of shenanigans going on.
One day, one day I will write a book, something like - Doctor's oversights.....
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