Unfortunately things are going downhill
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Kandy- Hoping your pain goes away soon! Sending hugs to you
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in your pocket Kandy! I continue to pray for you! I hope this makes you smile—my husbands Christmas present—
Apparently bloodhounds like to sleep like this!?!
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kandy, I hate to hear of you having so much pain. I hope it gets resolved soon and the new dose and potassium get you back in the pink.
kjjones, that is the cutest puppy I've ever seen!
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I haven't checked in for a couple days, so I guess I will try to update. I just can't seem to get off the downhill roller coaster. I didn't feel well through the weekend, even with getting blood on Saturday. On Tuesday morning, I woke up so sick. Stomach was killing me and vomiting. My husband was too afraid to leave me to go to work. Called MO, they decided to do a brain MRI. They did that and sent me over to get fluids. MO came to talk. He said the MRI showed mets in the dura, he said it was where there are numerous mets in the skull and is afraid that if something isn't done the skull will fracture. He is checking with RO to see if he will radiate so hopefully that doesn't happen. There is another new place in the brain that was questioned to be mets. Recommended very short follow up. So I suspect we are moving on into the brain. I feel like there is no stopping it. He changed meds, hopefully to make me feel better. In the past 4 weeks I have lost 20 pounds. Too much weight too fast. I have no appetite. And always feel like if I eat, the vomiting will start. Now I really don't have any more weight to give up so I hope that stops soon. I can't decide if I feel so bad because of mets or do I feel so bad cause of side effects. MO also thinks the liver needs to be radiated to reduce the swelling. They are still trying to get me approved for keytruda under passionate allowance. There is a team of oncologist that meet to discuss difficult cases to see if others have a better idea. He is presenting my case on Monday. I see him again on Tuesday so maybe he will have a new plan. ThInking and praying for each of you. Keep the prayers coming that they find something that works fast on this cancer that seems unstoppable. Love and hugs to all of you.
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Kandy, sending prayers and positive thoughts your way
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oh Kandy- I’m sorry you feel so bad. I hope they find a solution to get some calories into you - that could go along way. Thinking of you and praying for a brilliant new idea for treatment.
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Kandy, I have continued to follow you, and my prayers for you will never stop. It must be so difficult for you to try to try to process so much that is happening right now. It would be hard for someone to do even when they were feeling well, but here you are weak from lack of nourishment, vomiting, and pain. It sounds like your MO is taking every possible step to find the best course of treatment for you. He is plowing ahead quickly , and that is good. He is prioritizing things to make sure all the right steps will be taken in the correct order. I hope that the plan he presents to you on Tuesday is the one you need to create the response we all want for you - relief from pain, shrinkage of mets, and stability or improvement beyond that. You have been suffering too much, and we all want you to just feel good again.
Hugs and prayers to you and your family.
Lynne
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Kandy - you are in my thoughts daily. Thank you for updating us and praying for us, especially when you are in such pain and discomfort. You are such a kind and caring person. I hope the new meds bring you relief soon and your next treatment slays this beast. You are incredibly strong. We are here for you. ((((HUGS)
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Kandy - I am praying for you and the team caring for you. I sense your oncologist cares and the team is good and I am pleased to hear that. The rest is hard to hear. I pray you and your family find the strength you need....
>Z<
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Praying for you Kandy and will continue to do so.
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I am sending prayers up for you right now. I wish I could offer more.
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Kandy, I haven't been around much. I'm sorry to hear you continue to ride the downhill coaster, as you said. I hope you are awarded the compassionate care you need for the drug that may help. Prayers and more prayers.
Amy
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Continuing to pray for you and your care team, Kandy. Praying for strength and relief.
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Kandy, I'm so sorry to hear this. Praying for some relief for you and for wisdom for your whole team of doctors to find the right protocol for you. You pray for all of us so often; please know we appreciate the update as I know you don't feel well. Sending you a big gentle hug tonight.
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thinking of you Kandy. I so much hope that they can find your golden ticket. You deserve it! Continue to get your rest so you may fight this beast! I am sending thoughts of strength! Gentle hugs ~M~
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Adding my prayers to everyone elses, dear Kandy!
Hope your MO comes up with a workable plan for you.
L
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hang in there, Kandy!! We are sending you positive thoughts and prayers
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Aww Kandy, I'm so sorry you feel this bad. About all I can offer is hugs and hope that that helps.
Pam
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Oh Kandy I'm sorry to read your new challenges. You are in my daily thoughts and prayers. This is probably a redundant question but do you have adequate anti-nausea meds? I went through a phase of nausea and vomiting, didn't want to eat anymore and dropped 36 pounds. We finally found that Zyprexa worked extremely well for nausea and I add Zofran when necessary. I pushed and pushed until I found relief of n/v. Sending you hugs.
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Still praying for you too. This downhill slide sucks. I had a tumor growing behind my left eye that has been radiated. I asked for follow up scans today cause I have been very dizzy at night. My pain has stayed pretty much under control thanks to fentyal patchs. I drink boost everyday. I have lost 10 pounds since July & spend the majority of my days in bed. My 6 kids came for thanksgiving, I thought 2 christmases ago was going to be my last, but I am still here. You can request home health for IV fluids. Hang tough, 💕 Su
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Thank you ladies for all chiming in to support me. Yesterday I actually felt a little better and got some Christmas decorations up at the house. So far this morning I feel half way decent so maybe with tweaking the nausea and pain meds helped. It seems like in the past by the time we get them where I feel half way decent, something new happens and we have to try again. But for now I'm very thankful for a couple days break. Found out yesterday that I was approved to take keytruda. It will be interesting to see if he goes ahead and changes me or if he waits another month to see if Ibrance has done any good. If he gives me the option, I'm not sure what to do. What do y'all think. Supposed to start snowing this afternoon at my house. I do not like cold weather much less snow. Take care ladies, praying for miracles for all of us
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Kandy~Ibrance is known to take a little while to work. Don't know how many rounds you have been on. I do know the opportunity to try keytruda would be wonderful. Could you go back to ibrance if needed ? Ask a lot of questions ! If keytruda is known to work faster. Try it, but reserve the option to go back on ibrance if you need to. Thinking of you! ~M~
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Kandy, So happy to hear you have been approved for Keytruda!!! That is fantastic news!
Praying this is the magic bullet!
Robin
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Hi Kandy,
Makes my day to think you're going to have a reversal and get a break and be able to enjoy the holidays. It seems you have not yet tried Halaven or Abemaciclib? Abemaciclib and Keytruda is an up-and-coming combination currently in phase I testing- the reason is that CDK4/6 inhibitors like Abemaciclib or Ibrance were found to lower the protein level of PD1/PDL1, the protein that is a target of immunotherapy like Keytruda. So the Abemaciclib could lower the level of the protein that the immunotherapy monoclonal antibody wants to inactivate- and in preclinical studies, the combo is synergistic, better than either alone. So if you can take Abemaciclib (it is FDA approved and you would want that over Ibrance because it is has activity on its onw, and works on brain mets) along with the Keytruda, that would be great. And still low side effects, so maybe even throw something else in... And then Halaven, supposed to work so well on liver, you haven't had that yet?
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Kandy, I lurk on the this forum, but wanted to come out of the shadows to give you my good vibes and thoughts.
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Kandy, I am so happy to hear that you are feeling a little better! I think the combo that works the fastest and gets the brain is the way I would go. You know you are always in my heart and thoughts and prayers!
Claudia
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Kandy, so delighted that you are getting a break from feeling so poorly. So well deserved and awesome news on the Keytruda!
Best, MJH
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kandy, I was so relieved to hear you are getting a respite from feeling so bad. And approved for keytruda is awesome! I'm not sure which way I would go with the Ibrance although it held me steady for about 8 months. I guess it depends on how it would work on new skull mets too? Anyway, you do sound like you have a good team and they are on top of things. I pray so hard that you get a giant break soon. You are always so sweet and supportive to us all, we care so much about you!
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Kandy - so glad to hear you are feeling better (that is a relative term). Now let's get you that Keytruda!
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Kandy, I was so sorry to read in your post that you were not feeling well, and about the new brain complications. I'm glad to hear you are feeling a bit better. May it continue! We have snow here in Michigan today. Like you I do not approve. I want summer back.
Please know that I am thinking of you and sending healing thoughts of strength and peace.
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