Bone Mets Thread
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decision freak. No advice sorry. UT super happy you are standing up for your mom. Nice to get her things that make her feel pretty. A good daughter you seem
Bosco. SWEET!! So happy you are home. Happy dance
Ma b and 13 thanks. I had no. Idea where to get another written letter to
Yes please come y'all. We can whip that charge nurse then have a party
Doing good. No vomiting.hoping to get out tomorrow.
Hugs to all you lovely women
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Patty. So glad no vomiting and hopefully you can blow that joint tomorrow. That charge nurse needs to be fired!!!! Her behavior and laziness is unreal.
Rachel. Great picture of you and your DD
Bosco. So happy you're home!!! Enjoy but don't overdo
I'm visiting my folks who don't know I have MBC and my step mom tells me I look tired and pale- she should only know! But no reason to upset them. They can't do anything from afar and knowing would really be too difficult for them at 94 & 85. So I might hardly be on the boards til next week!
Please be well all my wonderful friends
Babs
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Well, DF, I'm glad that you were able to affect some improvements for your Mom's situation. I just wish I had the wisdom to offer real assistance, but I've never been in your situation. The closest thing I can relate it to is a dear friend whose youthful 94 year old hubby -- very athletic and active -- just went through a similar situation when he had a double health crisis and our local hospital and docs not only refused to do a surgery he desperately needed because of his age, but did everything in their power to block getting him treated elsewhere. My friend is a remarkable, tenacious woman and a force to be reckoned with, and long story short, with great difficulty she was able to get him moved to a larger, better hospital (Loma Linda), where they treated him, performed surgery, and he's doing absolutely splendidly now. But you know, in retrospect, it was probably a blessing that the local hospital didn't do surgery on him because she got him moved to somewhere that saw him in a totally different light, performed surgery, and saved his life, and if our local docs didn't think he would come through surgery, the odds are probably pretty good he would not have in their hands. Hopefully, you will be able to affect a similar outcome for your Mother -- whether that means moving her or getting them to focus on what she needs aside from mbc care. I love the fact that you got her some "feel good" things in the gift shop and arranged for visitors. Another thing that I think helps medical staff relate better to elderly patients -- and perhaps you already know this -- is to put a younger photo or two of them in their room, so that the doctors and nurses will get a better sense of who your Mom is beyond the very sick woman they're looking at at the moment.
Wendy, did the radiologist you met with say that they saw healing on one of your scans? Evidently, it can be hard to differentiate between it and progression if you don't know a patient's full medical hx. My onc explained to me that when metastatic lesions heal, the changes they go through can actually look like progression, but they're actually filling in, not worsening.
Well, I had an absolutely terrifying experience this afternoon. I was walking my little lhasa apso and a viscious large dog I've never seen before came flying out from behind a wall and attacked him. It was the most awful few minutes. He had Teek by the neck and was shaking him violently and I was literally screaming at the top of my lungs and trying to kick at this dog, who I was afraid might attack me. OMG... A young boy finally appeared on the scene and got his dog to let Teek go, and miraculously -- probably b'cuz he's a bit chubby and furry in the neck area, there was no blood or serious damage -- just an incredibly traumatized dog and owner! And all the while it was happening and I heard myself screaming, I kept thinking... Oh, this adrenaline rush cannot be good for my mbc! It was horrible. Thankfully, some neighbors came right over to help me check Teek out and calm us both down.
Too tired to read or write anymore, except to say I'm very thankful you're home, Bosco... Hope tomorrow's the day you get out of there, Patty, and glad you've gotten such great advice here on what can be done about your horrible experience. Love the photo, Rachel... and Babs, have a safe trip and good visit with your folks.
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bosco, So glad you are home.
Patty what an awful story. I am amazed by the great job you did advocating for yourself despite exhaustion from your difficult night. I hope you are home soon.
Mary
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Dlb, we must have been posting at the same time. I did want to say I am so greatful you and your dog survived your encounter with out injury.
Mary
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Deanna,what a terrifying experience. I am so happy that neither you nor your dog was hurt. The outcome could have been so much worse. Is there a leash law in your community? Did anyone report the incidents? That dog should be leashed before another dog or a person is attacked and suffers a worse fate.
Rachel, the picture is beautiful. You must be so proud of your daughter. She obviously has dedicated a good deal of time to earning her award. Congratulations to both of you.
Wendy, It is amazing how easily communication between our doctors can breakdown. Unfortunately it causes an erosion in our quality and continuity of care and aLeo delays tx in some cases.
Babs, enjoy your visit with you dad and stepmom. I understand why you haven't told them about your MBC. They do not live close to you, and they would worry constantly. Although the extra emotional support they could provide would be nice gor you, the added stress would not be good for them, especially at their ages. My 97 year old mil is unaware of all the medical challenges my DH has faced over the past two months. She has noticed that we have missed our weekly visits with her, but it would be difficult for her to experience the stress and anxiety from all that he has faced.
Patty, I hope you go home in the morning. I am pulling for you.
DecisionFreak,your mom is lucky to have you there to advocate for her. I have learned that individuals can make mistakes, and it is important for patients to have advocates with them to monitor things and speak when they cannot.
Lynne
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Hi all,
Very tired from having company over for dinner, they were lovely, they know my situation & they kindly left early because they know I have to travel tomorrow for my infusion.
Hoping a painfree weekend for all your warriors out there! Wow, you are a fierce bunch, I should have some of you go & talk to my MO who won't return my calls from 5 weeks ago about the POG Program. I'm sick of fighting for answers, I may have to change MO's.
Take care girls! cheers, Dee
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Hi Dee, Good luck with your infusion. You have a long way to travel, right? Ferry? It must make for a long day for you. I hope you have good weather. My DH and I are spending the night in a Boston hotel because he has some follow-up appointments in the morning at the hospital. I am a coward and dread driving in Boston's rush hour traffic, so this was a good plan for us to come down the night before. I have to admit that I can't wait until the appointments are over so we can get the heck away from the hospital and back to NH. Have a good weekend.
Lynne
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dlb823, what a wonderful story about the 94 year old hubby, and it gives me hope. I heard similar stories at the ACS Hope Lodge about cancer patients being moved to top facilities and finding the help they need. My mom doesn't want to be transferred to another hospital. I am not sure how we could afford to stay in another city but often solutions come after the right decisions are made. I may try again to talk with mom. She is breaking my heart. Terrific idea about the youthful photos. I thought the same thing today but the idea backflipped out of my mind. Not sure where I put my mom's photos but will try to find them. Great minds think alike. I came home this afternoon with a sinking feeling of failure that I haven't done enough.
Patty, you are a champion. That nurse is scary and destructive. She is responsible for human lives, and I wish I were there to help you write complaint letters.
Everybody else, I am very tired. Three wasted hours in a fruitcake rheumatologist's office and then nearly four hours at the acute care hospital. I love clothes, and ever since I started buying clothes, shoes, and accessories for my Mom, people stop her everywhere she goes to compliment her. A man in the chemo infusion room was sending her treats one day when she looked really cute. My brother didn't like that someone was flirting with his 85-year old mother and wouldn't tell my mom who was sending her the treats!
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Oh Patty, what a horrible ordeal! I hope she gets fired! Her laziness has no doubt cost an unknowing patient their life. Totally unacceptable!
Bosco, so glad you are home. Now you can rest comfortably. I loathe hospital beds!
Rachel, such cute kids!
Deanna, oh my gosh, that's really scary! I'm so glad that Teek is unharmed! I bet you'll be walking a different route for a while. So happy for your good scan results!
Lynn, I am a total chicken driver! I won't drive on the highways most of the time. I have my little 10 mile radius in which I am comfortable driving. I'm sure you are just sick of hospitals and Boston all together! Will be good to get back home.
Dee, good luck with the infusion! I get the worst flu symptoms from zometa. I hydrate and all. It just kicks my butt.
Christina, my heart just breaks for you. I wish you didn't have the world on your shoulders and could concentrate on yourself for a while. Would love for you to catch a break.
Thank you all for your advise and support for the last (almost) six months. I have learned so much from you. I honestly believe that I couldn't have made it without you. When I first heard " stage IV" I thought that I would be gone within 6 months. Yet, here I am. Currently painting and replacing the flooring in my laundry room. Life is just moving along. Thanks to some pain meds, I am able to function almost normally. You are all in my daily thoughts and conversations. My family asks daily for updates. Huge hugs to each and every one of you.
Love Chelle.
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Deanna, that is horrifying what happened to your precious dog!! Thank God he seems to be ok! How horrible it must feel to see your baby attacked like that!!
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Bosco: so happy to hear you are home.
Patty: Hope you bust out of there today. My husband is a human resources director for a hospital. I will ask him for any other insight on what can be done to address this nurse's blatant disregard for competent care and human compassion and integrity.
So to answer the question about how long we wait for scan results, my MO is incredibly quick! I finished my scans (CT of chest, abdomen, pelvis and full body bone scan) around 5 and at 8 she called with all the results. They were 90% excellent and 10% needs more testing. (My equation, not hers.) Lungs, lymph nodes, and liver are clear. I had a questionable liver spot in August, but they are confident now it's a hemangioma. No new bone mets, the dozens I have are responding and becoming sclerotic. For follow up: apparently I have a T10 compression fracture. I am aware of that spot if I stand for a long time but I've only needed to take ibuprofen once or twice in the last few months, so that's surprising. Also narrowing of the spinal column. So I will be having an MRI of the full spine next week. Ovarian cyst but she thinks that's chemo pause related. Will test again in 3 months.
So overall good news and my treatment (Herceptin, Perjeta, Tamoxifen) will continue.My husband and I are taking the train into New York tonight to see The Book of Mormon. It was my Christmas present, but also great timing to celebrate that all this treatment is working.
I wish everyone the best weekend they can have. I care deeply for you all.
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Rachel, I am happy for your scan results. I am doing that happy dance yet again, and this time it is just for you. WOOHOO! The rest of us need to have our MOs talk to yours do that will straighten up and get us our results that quickly. Three hours! I am impressed.
Chelle, I am glad that you have found support and comfort here. You have been an enormous help to me since you joined. Although I am sorry that you had to join us, you have been a blessing to me and I am sure to others.
Cristina, I am praying that things get better for you. You have been having a hard time. I have missed you on this thread and was worried when we didn't hear from you. Keep in touch while you can.
Bosch, I hope you had a wonderful night at home. Relax and recover and enjoy being home.
Patty, I hope you go home today. I have no doubt that your family is looking forward to your return.
Deanna, I am still think of the experience you had yesterday. I hope you are okay this morning.
Happy Friday everyone.
Lynne
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DLB, Boston traffic isn't so bad.
I don't know how I drive in it every day (sitting in traffic as I write this) but hope you at least had a nice night in the hotel. Deanna, I am so glad your dog is OK and that the dog didn't turn on you too. That had to be so scary..
I'm feeling pretty down this week knowing that my mom switching from falsedex to Xeloda is going to be hard as I know the side effects are going to be tough. I ordered flowers to surprise her with today. Hoping it cheers her up.
Ok. I'll respond more later, got to focus on driving
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Hello to all,
I am so behind here after a busy week so I'm just going to jump in.
Patty, I'm praying you'll be going home soon, what a terrible experience you've had there. It was infuriating to read about how you were being treated!
Bosco, I hope you're comfortable at home and feeling better.
Aurora, yay to those scan results! You have come so far, I'm so happy for you!
Babs, enjoy your time away, we will miss you.
DecisionFreak, you are not a failure, your love for your Mom and trying to get her the best possible care is evident in all of your posts. She's lucky to have you!
Rachel, congrats to your daughter, what a beautiful picture of the two of you and such a proud moment I'm sure. I'm ecstatic at your amazing scan results and so happy you got them so quickly! Enjoy your time in New York with dh, you deserve it.
Lynne, best of luck with all of the appts. Drive safely and you and dh will be back in NH before you know it.
Dee, good luck today with your infusion. That's a lot of travel for you and must be so tiring.
Deanna, your story about the attack on Teek had me trembling just imagining it! I hope you're both ok today, sending you big hugs!
Wendy, yes bones can heal! It is amazing and all of my mets have healed after rads and letrozole. I saw my rad onc on Wednesday and he said all my mets are sclerotic. Hoping you get more definitive answers soon.
Chelle, I'm glad you're able to function well and doing things like painting, it's a nice distraction and makes us feel normal. I'm currently doing the same, helping my eldest dd redo her bedroom. New furniture, bedding and we're going to paint an accent wall.
Sending hugs to everyone here, Lindalou, LindaE, Terre, Marilyn, Mary, Mab60, Lynnwood, LovesMaltese, DaughterLove and all you beautiful ladies!
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Dee I'm with you there I really like my MO she is very sweet but she doesn't listen. I phoned eight times to get some kind of answer on my bone scan nothing... Now I have to wait another week for some kind of info. What do they think we are doing with our time while we wait do they even think about it? Frustrating..
Deana wow that is a scary situation and one that renders us helpless for a few seconds till we spring into action. That dog needs to be reported if an animal attacks a little dog then other dogs and cats and children could be next. Things like that always make me angry people know if they have a dog with issues its just irresponsible. I had to smile though when you thought mid kick on how it would be affecting your breast cancer ..it never leaves us eh? I hope both you and your little guy are doing well .
Rachel great pic you guys look wonderful. Have a good time in New York you have earned it.
Wendy
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I hope you enjoy the Book of Mormon! My family and myself are cultural Mormons (we are not religious fanatics with rigid beliefs), and I think it is astonishing and only in America that people would flock to see a play about the religion.😀 It is so typical of Mormons that the missionaries would hand out the Book of Mormon to those waiting in line to see the play, lol. Take good care of yourself and have a wonderful weekend.
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Good afternoon ladies,
Busy here at work. But I like to be caught up on this thread, so I made sure to read in between.
Patty- that nurse was awful, she needs to be fired, please lodge an official complaint if you are able. I'm hoping you are out of that hospital today!!
Deanna- how scary that your dog was attacked! I would be following up with the owner of the attack dog to see what measures need to be taken. I'm glad you and doggie are ok.
So I wanted to ask your input about my tumor markers. CA 15-3: it's now 45.1, up from 37.8 in January. It was 40.3 in Dec, 49 in November and 63 in September. That was the first month. So why did it go up? I was in my off week of Ibrance when I was tested FYI. Then my CEA: 18.6 current, 19.9 Jan, 21.5 Dec, 23.9 Nov, 26.7 Sept, and 1.9 July 2014. What do you guys think? I don't like that my CA 15-3 is going up this month.
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Cristina, I've got to dash out of here for a lunch commitment, but just wanted to say, TMs do tend to go up initially with Ibrance. Not sure that's your situation, but it's very common -- probably more common than them falling immediately -- and there were cases noted in the trials records where women didn't get results until around their 6th month, at which time there were suddenly dramatic improvements. Hopefully, that's what's going on with you, but only your onc can make the best determination re. your situation, taking pain level and scans into account.
More later... Oh, PS... my onc once said she wouldn't worry about my TMs unless they double. Just one more thing to maybe help you be more patient, if that's your onc's recommendation as well.
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My oh my ladies - Bosco, and Patty and everyone else experiencing difficulties, I am overwhelmed at your strength and patience dealing with hospitalizations and scans. Patty I was appalled at the behavior of that nurse. She has no business representing such a noble profession. I hope you are home soon, if you aren't already.
I spent three days this week in the hospital with an infection my body couldn't fight due to neutropenia from Ibrance. My details are outlined a little lower in my message but speaking of poor attitudes, I encountered a couple lazy nurses and NA's during my hospitalization. Just one experience, upon admission my fever was 102 and I was shivering to no end. The ER gave me warm blankets to wrap up in and replaced them regularly until I was transferred to my room. Upon arrival, there was a clean bed and a sheet. When I climbed into the bed I asked the nursing assistant for a warm blanket. She said no...when a patient has a fever you cannot mask it by covering them up with anything warm. I was to wait it out under the sheet. I explained the ER was more than happy to provide warm blankets and all she said was I was taught to not mask the symptoms so no blanket, warm or otherwise. By this time I'm shivering uncontrollably and looking for my down coat to wrap up in. The nurse came and and said, here let me take that from you and get you some warm blankets. ??? Good grief. I was grateful for the nurse knowing her business and ticked off at the NA for not knowing hers.
Checking in to see how everyone is doing and give an update on progress with Faslodex & Ibrance. Almost two weeks ago I finished my first 21 days of 125 mg Ibrance. As expected my WBC tanked and my MO called to say I was neutropenic advising I stay out of crowds, be diligent with hand washing, take extra precautions to stay away from sick people, etc.
My MO has been monitoring my blood weekly and because the WBC is still low at .8 she said to hold off restarting Ibrance. Unfortunately Monday evening I ended up in the hospital with cellulitis of my right arm with lymphedema. Spent 3 days on IV antibiotics and discharged with oral antibiotics. Today I had another blood draw and finally my WBC improved to 2.1 so MO nurse calls and said MO wants me to restart Ibrance 125mg today.
I'm puzzled why on earth would she recommend that? At the very least why not at a lower dosage? How can she possibly expect a different outcome? I said I'm going to take the weekend to think about but that I am definitely NOT excited to restart Ibrance at the same dosage.
So I'm looking for experiences from others - has this happened to you? What did you do? Did a lower dosage work better and was it still effective?
I feel lucky I ended up with only cellulitis. What about pneumonia or a blood infection? Potentially life-threatening illnesses. In this case the cure could kill. I'm not trying to be dramatic, but I am non-compliant right now and looking for others to weigh in on their experiences. Thanks so much for anything you are willing to share.
One more question, how long does one typically stay on Ibrance? I know the expectation for Femara was 5 years or more but since Ibrance is an oral chemo, is this more of a short-term therapy or until it stops working or is no longer tolerated? I'll ask my MO when I see her next week but again would love to hear of others understanding.
I last checked in close to a month ago, so I cannot address everyone who's going through rough times but please know I think of you often, Linda E, Linda lou, Annie, Cristina, Aurora, Wendy, Chelle, Mary, Babs, Rachel, Dee, and pray for better days. Hello to Decision Freak and DaughterLove. We haven't met but it's nice to "meet" you. I hope everyone has a good weekend.
Amy
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Cristina. For me the CEA has never been indicative of what's going on in my body. The CA15-3 is always spot on. But my MO feels that it's only an indication and scans are the most important. While I was on Ibrance my Ca15-3 went up a little the first 3-4 mos but scans showed stable. You need to see what your mo thinks. Your increase is still not a lot thank goodness as Deanna said
Amy I also had a cellulitis bout with lymphadema while on Ibrance/femara and my MO also didn't reduce the dosage from 125. I think every MO is different with regards to Ibrance!
Bab
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I take Ibrance 75 mg. It was reduced almost immediately due to plummeting WBCs in August and September 2015. I've been on 75mg for several cycle already. I'm actually wondering if I might be able to go back up to 100 mg with the increase in my tumor markers. I will discuss w my onc for the next cycle perhaps. I have been having side effects of heartburn and fatigue so I don't know if I would even want to tolerate 100 mg. I already have it in my mind I may need to switch treatment but I don't want to rush through treatments. Someone posted on FB today about doing a clinical trial BEFORE it's your last resort. So now I'm thinking about that when my onc told me, "oh you're a long ways away from needing a clinical trial!" Guess I will go to one of my second opinion doctors to discuss this.
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Everybody, my Mom is improving and may be able to leave the hospital next week. I think she will need rehab.
Amy, I am not a doctor, so what I am saying here is only based on my Mom's experience. You asked about pneumonia. My mom has been on KADCYLA chemo treatments for her bone and liver mbc. Her labs were usually very good except her liver was sometimes not good enough for her to have dye before certain imaging procedures. My Mom had normal labs with good blood counts two or three weeks before her lungs collapsed. She was hospitalized on February 4. She had seen her family doctor two days earlier, and he gave her doxycycline for what looked like a skin infection on her back. She had been coughing for weeks but the home health nurse said her lungs were fine. The doctor thought the doxycycline would take care of the cough. The doctors at the first hospital suspected pneumonia, but it was hard to verify, and they threw antibiotics, steroids, and even a drug for shingles (?) at my Mom. If it was pneumonia or another lung infection, my take away is that even very good health professionals cannot always detect pneumonia. That means we have to be vigilant.
My mother ended up on a room sized breathing machine for at least two weeks maybe longer. I think it is reasonable to be concerned about pneumonia. When my mother's body temp got up to 100.6 and she started throwing up, I asked my brother to get my Mom to the ER as I was out of town on post ops. I don't know if my Mom will go back on chemo but it is still important to be concerned about pneumonia.
My mother's doctor told me it is important to take 10 deep breaths an hour to help prevent pneumonia when a person is sedentary and/ or lying down for long periods of time. I don't know about having a pneumonia shot while receiving cancer treatment but I am going to ask if it would be safe for my Mom. I hate vaccines but sometimes they are life saving. I am personally going to learn more about pneumonia and its symptoms. Usually, there are a cluster of symptoms for most infectious diseases, although they can be hard to tease apart both before and after the infection gains a foothold. The Federal government Web sites are a great place to learn about such topics. My mother did not have any chills. That nagging cough with an elevated body temp for weeks may have been a tip off but we trusted all the medical professionals to be monitoring my Mom. If I had a $10 bill for every time I told the doctors and nurses that chemo turns my mother into a moving target, I could fly to NYC this weekend and have a great time!
The medical establishment seems to be changing its mind about what constitutes a temperature. I wish we had pushed for a clear idea for the reason behind the cough and the elevated body temp that I wrote her doctor about repeatedly, but all we have now are today and the days that follow. The big lesson I learned is that the patient's complaints require careful attention. My mother kept telling her children and the home health nurse that she thought something was wrong with her lungs! The nurses listened to her lungs and said my Mom was fine. She needed a chest x-ray after she had complained for a week or 10 days about her breathing.
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So a small update I spoke on the phone with my oncologist and turns out over the last nine months there was progression the tamoxifen was not working. Why my tumour shrunk I have no idea. So I will be starting a clinical trial in two weeks ( apparently everything in Canada is in two weeks ). It's a randomized double blind, placebo controlled study of ribociclib in combination with fulvestrant. If any of you ladies know anything about this I would greatly appreciate if you could share your info. Will catch up with the thread later . Wish everyone a great night.
Wendy
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Amy, because Dr. Slamon @ UCLA is one of the creators of Ibrance and UCLA did the trials, the gals on the Ibrance thread had asked me to ask my UCLA onc the question, if counts dip, is it better to stay on the higher dose even if you miss some days, or is it better to go to a lower dose and not miss days. Her response was, if at all possible, it's preferable to stay on the higher dose. If it's any comfort to you, I just started cycle 7, and most of my SEs have lessened considerably. Your situation with LE and cellulitis may be different, especially if it's prone to recur, which I don't know but wonder about if you have LE. But it sounds like your onc is following the recommended protocol to try to keep you on the higher dose. I got very sick with a flu-like bug when we were in Las Vegas in December, although I didn't require hospitalization. My onc told me not to restart Ibrance until I was better and to have my wbc rechecked before I restarted. I think I waited 10 days (vs. my usual 3 or 4) for my counts to recover, and my grans came back at 3.1. So they do rebound quickly, as you saw if yours were quickly back to 2.1 (assuming that's grans and not total WBCs). And I can't believe you had that exchange with the nursing assistant when you were clearly shivering! What an idiot! How does a warm blanket mask a fever anyway? It's shocking how little they teach medical assistants these days.
DF, good to hear your Mom is improving! It's such a shame the medical professionals didn't listen to her complaints sooner, as well as her belief that something was going on with her lungs. It really sounds like they missed some pretty obvious signs, plus I'm surprised they didn't err on the side of caution due to her age and the fact that she was on chemo.
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Deanna, that's great information! Thank you so much.
Amy
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Deanna, I am in genuine awe at the level of knowledge and understanding you have in regards to your treatment. I am going to have to learn more than I know if my mother has chemo again.
I am starting to feel as if Medicare should pay me for being responsible for identifying and diagnosing my mother's medical conditions. Today I advised the doctor at the acute care hospital to start my mother on two tablespoons of yogurt per day to prevent c-difficile now that the hospital has stopped the antibiotics and to ask the physical therapist to check for lymphedema on her mastectomy side in case she needs a compression sleeve as at least one of my Mom's arms looks gigantic. I will never again allow anyone to brush off my Mom's complaints if they last over 7 to 10 days.
The obvious question is when am I off duty? You know the answer, but we only get one Mom, and she has been a good mother and friend to me.
Boy am I flabby from being sedentary for the past 30 days while my surgical incisions heal. That will change. We have to clean the house from top to bottom because my mother will be coming home sometime in the next few weeks.
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Good Morning
Amy, so good to see you again. Your hospital experience echoes frustrations that many here have been going through. Glad you are out and can enjoy a few warm days that are coming up.
Dee, hope you are feeling ok today.
Mary, anything new with you?
Lynne, How did the checkup go?
DF, Good that your mom is getting better.
Rachel, I too have hemangiomas on my liver which at first look we all thought were major liver mets. A biopsy confirmed that they were indeed hemagionmas. Good luck with your full spine protocol. I know they are long. Will you also have a consult with a neurosurgeon?
Speaking of neurosurgeons, I had a followup with mine yesterday, and as we were viewing an older MRI, he asked me questions like I was a medical student. I was his last patient of the day so he had lots of time with me. It was great. Got to see the entire spine bit by bit. Loved it.
Has anyone heard from Myra? I pm'd her but didn't hear an answer.
Good weekend to all
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Good morning all,
Amy, too many negative hospital stories here. Take care of yourself.
Wendy, darn I'm sorry. I suppose your MO came to that conclusion from your bone scan? I think this may be the study you will be participating in. It' also in my "tool box". I will do a search for ribociclib on this site and let you know if I find anything. Even if you don't get to have the ribociclib, fulvestrant or Faslodex gives very good results. Check out the Faslodex thread, pajm gives some good tips for the injections. Wishing you the very best!
https://clinicaltrials.gov/ct2/show/NCT02422615
Lindalou, I too would love to hear from Myra.
Talking about being flabby Decisionfreak, I bought myself a treadmill, second hand in good condition. Will have it next week. I have to move my butt (which seems to get larger), can't walk outside with the weather cocktails we've been having and more coming up in the forecast.
Good week-end to all!
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Wendy, I am sorry to hear about the progression. It seems odd that the tumors did shrink if the treatment wasn't working. There is so much more I have to learn. I am glad that you will be starting in a clinical trial. I have nothing to offer about the drugs that are involved, but I hope you have great success with the treatment. Completely off topic, but when you said that everything in Canada happens in two weeks, my mind jumped back to an old movie called The Money Pit starring Tom Hanks and Shelley Long. Every time Tom Hanks asked the builder when construction would be finished, he was told , "in two weeks". Of course it took months and months, but the answer remained two weeks throughout.
Linda, my dh's appointments went okay yesterday. It was exhausting for him, and I was glad that I had suggested a wheelchair so he wouldn't have to walk all over that huge complex. The GI appt went well. He has been eating more solid foods now and keeping them down (yay), so he was taken off one of his meds, which is great because it was causing insomnia and he really needs sleep. The appt with the infectious disease doctor was worth the trip. While we were in thee waiting room I told my DH that I though his eyes looked slightly yellow again. The ID dr picked up on it right away and ordered blood tests. The results will be compared to more tests on Tuesday when we see PCP to see where the bilirubin is trending. I don't like seeing jaundice again although it is not nearly as bad as it was in January. His bili count had risen slightly during his latest hospitalization then gone back down so I am hoping that will happen again. If not it could mean that the stent in the bile duct is clogged. Ugh. Anyway, the ID dr took copious notes about all the follow up appts we have with all the specialists, most of whom have nothing to do with original reason for hospitalization. He is going to contact every one of the dr's, get a plan in place to coordinate care so they are all aware of what's going on. He is then going to talk to the urologist who did the original surgery about overseeing the plan while keeping the PCP in the loop. I hope it works because I have felt like I was responsible for keeping everything in line. So if we can get five of the specialists out of the way including getting the stent removed from his bile duct, having the drain removed from his gallbladder, and having his gallbladder itself removed, then we will just have three to follow on an ongoing basis, urologist, nephrologist, and oncologist. That will be manageable.
Gotta go make beef stew. DH has been craving it. Hope it agrees with him.
Lynne
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