My Husband, My Life, My Love, My Family, My Cancer
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@goldensrbest — happy birthday!!
@emac877 — sorry to read of your progression. Gentle hugs sent virtually. In your pocket for Tuesday.
@illimae - hoping all is well in Texas. How are the puppies doing?
Any updates on @sadiesservant ? Think of her daily.
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sf-cakes, the fever is better, but now I'm vomiting again due to the spasms. Yuck!
The howling at 7:00 pm made me think of the "twilight barking" from 101 Dalmatians. I recall a friend of mine in the Sacramento area telling me that her neighbors would go out at a certain time and all yell to each other. Sounded like fun!
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Waving hello to everyone here.
@emac877 I am terribly upset for you and upset your MO gave you some that news. Where is any of this written in stone? I pray that your next line of treatment gets you heading towards stability in a hurry.
@goldensrbest Happy Birthday gal. We are very close in age. @cookie I love that extra photoshoot of Daisy.
I'm afraid I'm in the hospital and don't have a pen or stickies available. So please forgive me if I don't have the chance to address everyone. Just know I love and support each and everyone of you. I gave up on just going from my chair to porta-potty back to chair and eating in bed. Pill after pill and no relief.
The Ct-scan with contrast showed no cancer mass in my brain. Just saw hospitalist. They thought this was sepsis. I've been on continuous IV broad-spectrum antibiotics. She agrees with me that I believe this is MS related. I'm on IV solumedrol steroid also. Toradol IV for pain, which is a non-opiod. Here's what got me to the hospital. Massive head numbness, vomiting, pain over my eyes and numb over face and chin, tremors of head and hands and finally body shaking uncontrollably. Urinating every hour, zero bowel movement. No fever. Today pain is a 5, but that numbness and tremors and weakness continue. No stroke she said. So all in all very good news. Just gonna take some time to heal and consult with a neuro.
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Shanagirl - I would opt out of Versenio due to the D. When I was hospitalized just b4 Memorial Day for the severe gastritis (uncontrollable vomiting and D) I had 2 thoughts. First was I couldn’t imagine how patients on Versenio deal with multiple bouts of D day in and day out. I couldn’t do it. I’m grateful that was not a 1st line drug of choice. Do you have problems w/D? The second was after having all that nausea, I realized I could never take the diabetes rx that people are taking for weight loss. Can’t imagine long term nausea and if you stop the drug, the weight comes back. Thankfully I don’t need diabetes meds - just had my A1C checked and it was in the normal range. I think the number was even better than when it was checked about 10 yrs ago.
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@irishlove — OMG. Sure hope the doctors figure out what’s happening. In your pocket. And praying for a solution, comfort, and a return home.
I remember DH doing the IV Solumedrol many years ago for ADEM. Hope you are able to get some sleep while in the hospitalHugs virtually sent to you.
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Irishlove - Sweet Daisy belongs to Cookie. We have 3 goldens. Pic below.
And Cookie, I believe your lab probably has some golden in her. Just the shape and coloring of her face speaks golden to me.
The young lady in the middle, Bella, will be 13 tomorrow. We were never sure how long she would live. A few years back we had 2 half sisters along with Bella. Unfortunately they both succumbed to a cardiac type of cancer at 10. So if the genetics were the same, Bella wouldn’t be with us.
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Hi All. Just wanted to chime in on Verzenio. It has served me well for a year so far at 100mg. My cancer has been stable and not shown up at all on scans for eight months so I stay on it. Well, I just went back on it three days ago. I went off when I had pneumonia and a UTI at the same time and needed my antibodies to fight it. I also had extreme fatigue and whole body pain. I felt great once I was well again. The D is there now but manageable. Most days I only struggle with D for about an hour or less, then the rest of the day I am fine. Imodium and Zofran are my friends of course. I can take an Imodium before I go out anywhere and do fine. Just thought I would state my side of things. I do plan on going off Verzenio quickly if my weakness and body pain returns. Of course all meds react differently for each of us so please make sure you discuss all this with your MO before going on Verzenio. For some of you it may not be good. Also, it works on the cancer cells the same way Ibrance does so if Ibrance didn't work for you, Verzenio may not either. My onc put me on it because Ibrance worked well for me for four years. I had two years inbetween the two. Just more thinking to add to your arsenal.
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Sunshine I'm sorry you can't catch a break, fever gone now back to the spasms, ugh.
Irish Sorry to hear you landed in the hospital .You deal with so much between MS and cancer, will pray for your recovery. It's just so unfair.
goldens What a beautiful group of gals! Happy Birthday to beautiful Bella, my other Lab Misty made it to 13 also. Sad to hear the half sisters passed , wish they would live our entire life. Yes Daisy does have some golden in her. Depending on her expressions she sometimes looks pure Lab and other Golden Lab.
sfcakes I second your idea with us all standing at the ocean's edge together for a scream and then laugh until we cry I'm sure. I literally got chills when I read that because I pictured it so vividly in my mind. Thank you for that wonderful thought.
Mel Not a day goes by that I don't think of Sadie/Pat, wondering. I also think of Moth especially since she was so active on the TNBC thread. She was a wonderful intelligent woman. It's just heartbreaking to think of all of our fates. I try not to focus on that too much and really try to live in the moment the best I can.
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Hi everyone, I’m doing well but haven’t felt like posting lately, not for any particular reason, it’s weird. The pups are good, full grown at only 4lbs. Had a quick trip to Houston last week for a brain MRI to check on an “enhancement” but it hasn’t changed and we can’t confirm if it’s a met or not, fine by me as long as it doesn’t cause problems. Last bit of cleaning up tomorrow, BFF flys in Tuesday for a short visit. Other than that, nothing sounds good to eat except for an intense craving for fruit. I think this last round of Enhertu has got me feeling a bit odd.
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@dodgersgirl and all you lovely ladies, Thank you for the prayers and good wishes. I'm sending them back ten folk.
I did not take Ibrance yesterday due to vomiting. I don't know about the interaction between IV Solumedrol and Ibrance. MO not on duty today and I failed to ask the hospitalist, so I'll skip it. I did see a case study of a fatal interaction between a statin and Ibrance whilst researching. So just a heads up on that.
Hoping for a beautiful, peaceful, pain free day for all.
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Irish, I’m so sorry you’re in the hospital.
I’m on my phone so pardon if I don’t mention everyone.
I’ll be calling the GI doc in the morning since I can’t swallow anything without vomiting. Nothing but a sip of coffee and some sips of water which also came back up. Temp is down, so that’s good.
DH feels so sorry for me. I told him, “Well at least it’s not projectile vomiting!” We both got a laugh out of that.
Am resting now, but really afraid of trying to drink more water.1 -
we are all having such hard times right now it seems. It’s just too much sometimes to grasp how cancers arm can reach all of us in different ways. I am thinking about each and every one of you. I am sending nothing but strong loving hugs of support. I guess this is where we get tough . Love to all
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@goldensrbest Thank you for letting me know about your feelings on Verzenio. My Onc told me e wanted me on Verzenio but warned me that the Diarrhea is an issue with that med and if I have problems with it to call him. He said Immodium helps to manage that side effect…I did a lot of research on it when he prescribed it and decided he probably wanted me on it because it acts as a on the blood brain barrier, and knowing I had a history of brain bleed and stroke, I believe he Verzenio would be a good choice to keep me from progressing to brain met. So the day after I started on it, I had projectile vomiting and diarrhea all day on and off with stomach cramps. So I started taking the immodium, and that did the trick with the cramping and frequent bathroom trips. I learne how to manage it according to what I have planned for the day. I don’t take my morning dose until the afternoon sometimes and don’t worry about cramps during the day. Also when I went away for a week he let me go off it till I cam back . I don’t have the nause and vomiting either and I don’t have to use the Ondansetron for the nausea he prescribed.. So I do have more good days on it and my Onc is happy because there is no progression and I’m stable. I do get side effects from Xgeva & Faslodex, especially headaches, depression, bone pain and balance issues. I have no illusions about the fact that I’m stage IV and how many years I can remain progression free… I know there are a number of ladies who have had a good number of years remaining stable. I’m hoping that I still have a lot of years ahead of me even though I just turned 74 in April. My grandmother lived into her 90’s, and so I’m hopeful that there are treatments still available to me to keep me from progressing from bone Mets to other organs..💕so, goldens, I’m grateful to have this discusssion on Verzenio with you, thank you😊🩵💗
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I'm so sorry about your latest update. My thoughts and prayers are with you.
Not sure if the Travera test would be pertinent to your situation, but it's my understanding it's more successful with fluid biopsies rather than solid tumors. It's also my understanding they are not charging for the test at this point, but the cost of the biopsy procedure would be yours. Also, who ever does the biopsy must follow specific instructions, so it has to be coordinated with the company. BCO had a "Travera" discussion thread with more information.
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I’m having good luck with Verzenio. Last two scans showed stable. Not everyone gets crippling diarrhea. I’ve had it a few times but not very often. Imodium stops it in its tracks. I’m sure I’m lucky in that regard.
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Irish - sorry you are in the hospital. Fingers crossed it is a short stay.
Shana - sounds like you’ve got the Versenio D under control. That’s great!
Sending virtual hugs to all who are struggling. I wish I could order a week of good news only!
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I ended up in the ER/Urgent Care last night. Couldn't stop vomiting and lost 4 pounds since the night before. On call GI doc said to go to Urgent Care.
Got IV hydration, Zofran (YAY!) and lots of tests. CT showed new areas of ground glass opacity in lungs, but I was able to drink some liquids without vomiting.
The GI doc who did the endoscopy messaged me via the portal at 6:12 am today. So sweet! Anyway, I'm better today, but am holding off on the Ibrance. I feel like it was the trigger for the vomiting yesterday. I've messaged my MO.
Hope everyone has a decent Monday.
(Is there a way to tell which thread I'm on? I start typing and then I can't remember unless I scroll to the top.)
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Carol, I am so sorry you are struggling so much. This must be so scary. You are in my daily prayers my friend!
And no, I don't see any way to know which thread you are in without scrolling.
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sunshine99,
You're certainly going through a rough spell. Both GI and respiratory symptoms, yikes. I hope you and your doctors can get it figured out quickly. I've also run into not being certain which doctor to contact. My MO pushes a lot of issues to my Primary. My Primary thankfully is open to making referral to specialists. My thoughts and prayers are with you.
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Sunshine-I'm relieved you are in the hospital, getting care. Hope they can get to the bottom of your issues and you continue to get relief.
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Sending caring, loving thoughts and hugs to all you amazing women!
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Sunshine, I am sorry for what you are still dealing with, hope it subsides soon for you.
Everyone else I am in pockets as needed, everyone else, hope you have good days.
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Sunshine99 - I am so sorry to hear you ended up at urgent care. I hope they can get some answers for you quickly so you can feel better. In your pocket.
Weninwi - Thank you. I'm not sure either about the Travera. I spoke to my MO today and he is very confident that Piqray is going to be the best option for me. I will ask at follow up if we should consider something like Travera. That seems like a good idea.
I was able to get in today for an appointment with my MO. The prognosis hasn't changed but he felt that Piqray was going to be the best option for me. I told him I wanted to be as aggressive as possible with everything we had available and he was on board with that. Pending insurance approval I hope to have that started next week. Then I will be doing weekly blood tests to monitor my blood sugars. He seemed encouraged by how well I was doing today and said that there are a number of other drugs he could consider if the Piquray doesn't work or I can't tolerate it for some reason so that was encouraging to me also.
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Sunshine Glad you went to Urgent Care and got some fluids in you. Also happy to hear no vomiting today, anxious to hear what your MO thinks. Continued prayers and strength to you. Hugs
Emas So glad to hear you MO was encouraging and has other treatments on the list. I hope this week goes by quickly so you can get started!
Irish Hope your doing ok today , you were also in my daily prayers this morning.
Hi to all and big hugs to anyone who needs it today.
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sunshine99 I am glad that you went to urgent care and are getting good care. I hope they get to the bottom of everything and swallowing/vomiting is soon no longer an issue. I am in your pocket.
@goldensrbest Happy Birthday a day late. I hope you had a special wonderful day.
emac877 It is devastating that you are dealing with further progression. I'm glad your MO is supportive and a plan is in place. Know that I am in your pocket constantly.
micmel Hi and sending you some hugs.
mara51506 How are you doing? You have an upcoming test, is that right?
I LOVE all the dog pictures! They just make me smile.
I am quite sure I missed people and I am sorry. Know that I am always thinking of you and cheering you on. It seems many are struggling extra hard right now and I just hate it for you. So much love from me to each of you.
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Hello lovlies~ Mae thinking of you. Didn’t realize you were dealing with More medical what ifs. It’s always something. You are in my thoughts. Goldens ~Happy Birthday hood it is a good one. Emac ,glad they have more geAr in The arsenal of weapons!
sunshine I’m sorry you ended up In Urgent care. I hope you’ll get some good good rest.
cm ~ hello right back. Mara~ missed you today sweet friend. Candy~ thinking of you too. Living,Irish,Elenora, Tanya, wenin. Cookie, rk, Shana, Chicagoan, as always Sadie. Dodgers,Sfcakes,AJ, intolight hello to all you ladies. Sleep well.0 -
Hay ladies, I'm doing much better today. Still minor issues, but at least no vomiting. The GI doc wants to do a motility study. Sounds like fun (not), but I'd rather put up with an hour of discomfort that a day of vomiting.
My MO said I can take a two-week break from the Ibrance and then she wants to see me to discuss my meds. I can schedule a virtual visit with her.
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Sunshine, I am so glad to hear you are doing better. I will keep praying for you.
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HI all you lovely ladies. Hope tonight finds everyone feeling better. Back in the pockets of those in need and thinking of those bright souls that have paved the way for the meds that we now have available.
@shanagirl You are a young 74! Keep up that strong spirit gal. I know Ibrance covers the blood brain barrier also.
@sunshine99 So glad you got that vomiting under control. That's a lot of weight to lose so quickly.
@emac877 Sounds like you have a good MO working on a new regiment. Here's to many good years on your next treatment.
I'm HOME! It was a whopper of an MS attack. Good news, no sepsis or brain mets. And I really feel better after doing three rounds of Solumedrol. The 6 rounds of broad spectrum antibiotics left me with thrush, so eating yogurt. The MS attack has left me with head and hand tremors and complicated migraine. Some decent improvement. I came home and cleaned the house. That energy helps to make me feel more normal but alas it'll dissipate quickly. Have to do 10 days of taper prednisone, so hope for some more unnatural energy. LOL. MO postponed my Zometa infusion today until Thursday. Probably a good idea. Only missed 2 days of Ibrance. Bit worried about shipping of Ibrance as mine comes via UPS and they are going on strike last I read.
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Mel, I did not even realize I never posted. Internet as acting up, phoned to switch modems and all of a sudden, it started working. I was tired after the wait on the phone.
I had the meeting with CCAC. I was offered housework for money but I said no. Small apartment does not need it, I can change my mind if need be. Today I am meeting with a nurse, would be safer to do it while I wait for MRI and OT as well. Mean time, Paul Eugene is my jam and heading to the grocery store after nurse.
Finally getting my hashbrowns, english muffins and butter. I will probably get other stuff as well. I am just having crispy hashbrowns and eggs and beans and canned meat later in the day. Cats also had their smoothies as well, of course they loved them.
Hope everyone has a good day and for those struggling, I am in your pockets.
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