Unfortunately things are going downhill
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Kandy, I wish we could all show up at your house to help. Your daughter will be ok. Autoimmune hepatitis is treatable, and celiac will behave with a gluten-free diet. For yourself, tell your doctors they need to consult with each other and not leave the burden on you. Ask the social worker at your cancer center to help you with the SSDI and everything else. Sending hugs and wishes for a good night's sleep.
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Krista had her endo today. She did great. She is such a trooper. Dr said he was 99.9% sure she does have celiac disease. He said it would be about a week before the biopsy results was back but sometimes they could actually see damage to the small intestine and he could see it on her. He said he was going to put the liver on the back burner and monitor her labs. He's hoping that when she goes gluten free that her liver will straighten itself out. I'm praying for that too. If her liver functions continue to rise even with the new diet then she will have to have a liver biopsy to see if she really does have autoimmune hepatitis too. The hepatitis is what I'm most worried about. She will have a very difficult time adjusting to a gluten free diet but she has rose to every occasion so surely she will this time. Please keep her in your prayers, she means the world to us. Take care ladies and thanks for all the support. Enjoy the moment
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Hello Kandy -
I need treatment so you can stay healthy and be there for your family.
Your Hip
Seriously - worried about YOU >Z<
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Kandy, I am so sorry for all that you are going through. You are getting hit one after another. You are very strong to manage all that is happening and continuing to function and take care of your daughter. As others have said, ( and I know this can be really hard to do) remember to stay aware of your needs and ask for help. My prayers and thoughts are with you. This crap has got to stop soon!
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kandy. Sounds like you are getting some answers and some solutions. Hang in there. You can do this.
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Kandy, gluten free is a change in diet but fortunately, there are so many products and recipes available these days for those with celiacs. The daughter of a close friend of mine was dx 25 years ago at about age 4 with celiacs, and it was such an unknown disease at the time, she was taken to many specialists until being diagnosed in the nick of time before lasting damage.
My son's girlfriend eats gluten free by choice and writes a lovely blog filled with recipes. Thats also the advantage of the internet these days, lots of great info and food ideas. Years ago, my friend had to travel 45 minutes to a store that sold gluten free products...where a small loaf of bread was five bucks. Now you can pick reasonably priced stuff up at Walmart, amd even our locally owned grocer carries a selection of gluten free products. And I get a delicious gluten free brownie mix at Aldi's that I prefer to regular brownie mix.
I hope the dietary changes helps your dd with the liver issues.
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Ladies, I really am feeling pretty down and depressed. This morning my tumor markers results showed up on the web. Now they are up to 953. As I have said before mine has always been very indicative on what is happening. So I'm thinking Carboplatin isn't stopping those stinking things either. I go to the cancer center for treatment this afternoon, but I'm sure they won't do anything different till this cycle is done. I think I have 4 more weeks to go. I'm getting very scared that nothing is going to stop it now, 😔. Keep me lifted in your prayers, and take time to enjoy the moment. Wishing you all the best.
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Kandy, I'm sorry this is happening to you. how scary. I understand because I am having progression from bone to liver now, too. Well, the biopsy is tomorrow, but it's unlikely to be anything else. They are going to send my tumor tissue to Foundation One for full genetic sequence coding, and to see if the make up of the cancer has mutated to something different. From that they will be able to hopefully match me with the correct treatment that will also include an immunotherapy. Have you done this yet? Maybe you don't have to shoot in the dark to see what will stick?
I can't say dont be depressed. That would be hypocritical. I do think you can still get this under control. So here is just a big, supportive hug, which is what I would do if I were there in the room with you.
Stefanie
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Kandy - Lifting you in prayer this morning. Keep going. Only scans can tell you what is going on. I still expect this is a tumor flare - your blood is full of dead cancer cells and it effects the blood work.
If not, knowing your next step, as Stephanie points out, is the key. Clinical trials should be on your radar. Immunotherapy works best when the cancer has been primed with chemotherapy, you are in a very good position to try an immunotherapy trial. This is the immunotherapy trial on the top of my list, but there are many.
Immunotherapy Using Tumor Infiltrating Lymphocytes for Patients With Metastatic Cancer
Clinical Trials are confusing and often the best options are not in your own hospital. There are a number of services that can map out the path forward through clinical trials, etc. Life Trials is one of the more reasonably priced options.
If your current treatment is not the right drug, it just means you have to switch treatments. Discouraging but keep fighting. It's not too early to starting working on Plan B. The NIH trial I reference above encourages you to get in their system early so that they can be ready when you need them. There is a lot of work just getting registered and having your files reviewed.
>Z<
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Kandy,
I'm sorry that things are going downhill some more right now, and I'm praying that they will turn around soon.
I know it may be scary to think that you won't be around for Krista. But with or without a Stage IV diagnosis, we parents of disabled children need to plan for the days when we won't be around to care for our children.
I have a disabled son, and we have gone through a big transition this year as he turned 21. I would be happy to share my experiences with you, such as Legal Guardianship, Social Security (SSI), Special Needs Trust, Department of Developmental Disabilities (DDD), and Group Housing if you would like.
Thinking of you, and keeping you, Krista, and your family in my prayers.
Love,
Madelyn
Edited to add: not that I don't think that you've planned for Krista, because I'm sure that you have. Only that may I help with anything that is now weighing on your mind?
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Thinking of you and your daughter.
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Kandy, You are in my prayers. I hope that the TMs are not accurate for you right now while you are on this treatment and that the cancer cells are being brought under control. I know it is hard to wait so long, but once you have your next scans, you will have a better idea of how well treatment is working. In the meantime, we are here to Support you and share our love and strength with you.
Hugs, Lynne
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kandy, one big hug and pray that things will improve for you
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Kandy,
Thinking of you at this tough time
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Oh, Kandy. I'm sorry things are so scary right now. The markers could be indicating tumor flare. I second what Stefajoy says about asking them to test the tumor genetics to direct treatment. Also, make sure they have done the most sensitive Her2 testing. If it has changed to Her2 positive, there are very good treatments for that. May those markers start going down down down.
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Kandy, sending love and support. You are wonderful and such a fighter...look what you went through with that gigantic surgery. Your ship has not sailed yet. Praying for tumor flare pointed out by some of our very smart sisters
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I can't say not to stress either as we all know what it's like waiting for results. My TM's have seemed pretty accurate too but have risen with good scans because of any new meds. I think there is a whole bunch left for you Kandy so try not to despair. This is a rough bump in the road again but you have prevailed before. We are all praying hard for you!
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kandy...yure the one whos suppsed to show us how to get thru this kind of bs...no pressure there...i have been looking up to you as you face this, and praying for everyone.....i feel Z always has some great insite and valid points about the TMs and treatment opitions...does everyone have a marked increase in pain before progression?.....I'm very worried about scans on monday....lots of new pain for me lately.....does that mean anything?... its bone pain...not fun!!...as you all know
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Xeloda? My wife's ER+ turned triple negative with numerous mets to the spine. I gather Xeloda works for both . Bad SE's but a recent change of 7 days on a 7 off makes it bearable.
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Nan - nothing means anything but scans, really. hang in there. enjoy the weekend. you will know what is going on soon. what will be will be and worrying won't change it. don't let this disease take a perfectly fine day from you.
>Z<
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kandy. Checking on you. Hoping tx is going well and those tm's are headed down like a sled on Hill of ice. Cheering you on. Many hugs
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Awww Patty, thanks for checking in, especially with everything you have going on. TM's, still heading upward. About to break 1000. Yuck. Not sure this is working either.
On the bright side, I'm on my way back home from Gatlinburg. We rented a 4BR cabin and took all the kids with us. We stayed for 7 days. It was wonderful to have everyone together. It was also bittersweet, I had to wonder if this was our last family outing. I hope all you ladies are doing well. Remember to enjoy the moment. I'll post a couple pics. Even our unexpected visitor, lol.
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Smarter than the average bear?
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Kandy, love your pictures. I think often about the trip dh and I took last year to Pigeon Forge, Gatlinburg and Smoky Mt National Park. What an enchanting area of f the U.S. Wish I lived closer to visit it more often. Glad you had a nice trip, it sounds absolutely beautiful in a cabin. Your family is beautiful, too.
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Kandy, Beautiful pictures. Thank you for posting for us. I am glad that you had a chance to get away with the entire family. Sometimes it's hard to get time on everyone's schedule. Harper is getting so big. I can't believe it. He and your entire family are beautiful. Now about that unexpected visitor, holy cow he was a bit too up close and personal for my liking! We had two bears walk through our back yard one day. Now I always wonder how often those things happen without my knowledge.
I am still keeping you in my prayers and hope the treatments are doing a good job of crushing those cancer cells.
Hugs from, Lynne
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kandy. Love the pic. You gave a beautiful family. It's awesome y'all got to get away. Yes, I know how it feels to wonder if this is the last .....Whatever. Lots of pressure put on myself to make it the best. Wow was the bear that close ? Thinking of you and holding you up in prayer dear sweet bco sister
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Patty, that bear was that close, and we were all idiots out there taking pics, lol. We had seen him cross the street a few minutes prior. We were all standing out on the deck when he decided to pay us a visit. I thought he was going to stay on the other side of the fence but he came right over. Tried to get into the trash but it was in a bear cage. Then he laid out on the railing before he decided to mosy off. I guess I felt a little safer cause my son and his girlfriend both had guns on them. But looking back on it, it was probably really dumb of us. We did enjoy the time with the kids. You hang in there, brighter days are surely in your future. Praying for all of you. Enjoy the moment
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Lovely pictures Kandy. You'll need to go back there ...
>Z<
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Kandy, great pictures! Nothing like a family trip, it's hard to get everyone together at the same time, so when it happens its gold! Love the bear pucture, I would have been scared to death
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Beautiful family and great photos, Kandy. Always thinking of you and checking here often to see how you're doing. I'd like to think of that bear as your spirit animal -- bringing you strength and courage. Hugs, Deanna
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