jjgunny
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Myrna died early this morning at the hospital .she was the most kind, beautiful and wonderful person that I’ve ever known and she didn’t deserve this. I don’t think I’ll ever hurt as bad as I do now.
Hi Karen,
She is never alone and surrounded by family and friends at all times. Even her best friends from New York have been flying in almost every week to be with her. She is truly loved by so many people.
KarenD wrote:Jonas,My heart is breaking for you and your family for all of the sadness and grief you must all be feeling. I am so sorry that this is happening. I hope that Myrna will improve over night after her stent exchange and that she is resting peacefully.
Is your family taking turns staying with Myrna over night?
Hugs,
KarenHi Marion,
They are checking her potassium daily, it was initially very high due to her kidney insufficiency, but has been normal/low for the past few days. Her doctor isn’t sure what’s causing her encephalopathy, we are in a wait and see situation right now. She doesn’t seem to recognize any of us at this point, it’s truly heartbreaking. I hope it’s temporary and that she’s still in there somewhere. I wonder if anyone else has experienced this ?
marions wrote:Jonas….good to hear that all test results came back as normal. I wonder, have they checked her potassium level? Just thinking out loud. It may or may not provide some answers re: Myrna’s occasional state of confusion.Thinking of you and sending a tidal wave of good wishes your way,
Hugs
MarionHi Lainy,
Thank you for your reply. They are treating Myrna for a presumed infection, although all of her cultures have been negative thus far. She has been on broad antibiotics since admission. She has been stable, out of the ICU for the past 2 days, unfortunately her mental status has gotten pretty poor. She has trouble recognizing us sometimes and pretty much just says “yeah” to most questions. I’m hoping it’s temporary, because all of her labs are actually getting much better, but supportive med is telling me that this sometimes just goes hand in hand with advanced cancer. She is getting her biliary drain exchanged today and also going for a head CT to make sure she didn’t have a spontaneous bleed while her platelets were very low. Regarding hospice, the thought had certainly crossed my mind, but that is something I will need to discuss with my family, including Myrna hopefully if her confusion resolves. She has a great supportive medicine team and the topic has been breached. She is definitely at a low point right now, the lowest so far, and we are hoping that she can come back from this for at least a few more good months.
Lainy wrote:Dear Jonas, I am so very sorry to read about your wonderful Sister, Myrna. My husband, Teddy fought a good fight with CC for 5 years and then “relocated” 6 1/2 years ago. He may be out of sight but he is with me all the time, even approves that I am not alone anymore but with a wonderful companion as life is for the living.
Myrna is being treated at a good place but I have just a couple of comments. I am curious about the recent trip to the Hospital. Did they ever do a blood culture to make sure there was no blood infection which can happen so easily with Biliary drains. Teddy used to get them often and it turned out the drain was clogged or infected. A simple IV of Levaquin took care of the problem. But a blood culture is needed.
Please, try to look upon Hospice as an aid not an end. Most of them will start coming to homes a year out. They will not only help Myra in every way but will also help the family. I have recently retired from this Board but check in now and then as I cannot stay away and I had to answer your Post. It is so important that Myrna does not use up what little energy she has by being stressed and Hospice will help with that as well. They can only help. If you are not happy with them, of course you can cancel the service.
I am hoping for the very best for Myrna and your family. In the 6 years Teddy has been gone great strides have been made and we do have some hefty Miracles on our Board!KarenD wrote:Sometimes step 3 to 10 comes rapidly, and sometimes is does not. We cannot predict an individual’s lifespan. One of THE most difficult things working in oncology is the inability to prognosticate perfectly, because no one can. I am of course not there to see what is happening, but I do not think that the physicians are trying to hide anything in anyway. When it comes to having difficult discussions with patients/families, there is no script with which to follow.Jonas, Myrna sounds very sick, but there is absolutely no harm in getting her records together and getting second/third/fourth opinions because you never know what you will hear. You will have the peace of mind knowing you have done all you can as a brother/physician as well. If Myrna is afraid to receive hospice services, which is common, please do consider palliative care. As she is at MD Anderson, ask for consults from pain specialists for appropriate dosing, which as you know, will need continual assessment. Request a palliative care physician if this service is available so that they are a part of your sister’s team. She sounds very symptomatic, and palliative care specialists work hard to manage symptoms to avoid hospitalizations due to issues such as the dehydration induced by treatment/dysphagia/dehydration.
I am speaking only as an experienced oncology nurse, but do be cautious and carefully consider chemotherapy if your sister’s performance status is poor. Chemotherapy absolutely can do more harm than good, and any oncologist worth his salt will tell you this as well. Gemzar/Cisplatin is however, the standard of care treatment for this cancer. Oncologists offer this because the current research supports this treatment. Another thought, if Myrna rebounds, think about other agents that she could have which are perhaps less taxing on her, other chemotherapeutics, or oral agents. Ask the oncologist. MD Anderson is one of the top hospitals for CCA in the nation, I have no doubt that they would be open to your educated questions.
Is she doing better after having fluids/etc. in the ICU? Did her pressures come up? Is she more awake? I do so hope the admission helped her. I am thinking of you all.
-Karen
The information provided is not intended nor implied to be taken as medical advice. Please consult your health care provider if you have questions or concerns.
Hi Karen,
Thank you for your input. She is doing better today, she is off pressors, getting aggressive fluids and albumin, she is being moved out of the ICU to the floor tonight. They also placed a dobhoff tube to give her some tune feeding while she is in the hospital to try to get her weight up a bit. She does have supportive medicine, they were brought on board last time she was in the hospital, and they have definitely been helpful. She is more awake, and lucid most of the time. Her oncologist told me he is not giving up, and plans on proceeding with single agent gemcitabine in a few weeks if she gets better, which isn’t ideal but seems to be the only way forward. Myrna still wants to fight , she has a strong spirit and all the support in the world…but I can tell she is getting tired and disheartened.Myrna’s doctors are subtly trying to push hospice care on us, but she is not ready to give up and neither are we. I know she isn’t doing well but she has only had one round of chemo and I feel like she hasn’t even had a chance to really go through treatment yet. I think I am going to get all of records together and at least send them out to a few other centers just so I feel like I have exhausted all resources. Does anyone have any recommendations for physicians? Particularly ones who won’t shy away from aggressive treatment in these advanced, difficult cases? Again thank you all for your support and advice, I can’t even begin to express how comforting this group has been for me.
(sigh) My sister, Myrna, has been readmitted to the hospital, she was much more weak and less responsive than usual yesterday, couldn’t even stand up without falling, luckily I was there to catch her. BP was tanking, was 70/40 for a while. She is in the ICU now and doing a little bit better, but seems like she is getting worse quickly. They are treating her for possible infection Her bili is back up to 11.3 and now has kidney insufficiency, which I’m hoping is temporary from cisplatin and severe dehydration. My whole family is a wreck and very scared that she may only have a short time left with us , frankly none of us can bear the thought of losing her. Her oncologist is suppposed to come by today and look over everything, but I can’t imagine he is going to have anything good to say. I was going to start looking into getting a second and/or third opinion, but I’m not sure what more could be offered at this point outside of MD Anderson. Keeping my fingers crossed.
Thanks everyone for your input, definitely going to read up on everything. Billy, she is currently taking 12 mg extended release hydromorphone once daily and regular 2 mg hydromorphone every 3 hours as needed. I may ask her supportive medicine team if she can try to cut back to 8 mg a day to try to help with her sleepiness. Pain fortunately has not been too bad for her recently so think she may be able to dose reduce…
Hello,
Unfortunately there was not enough tissue in her biopsy to do a tumor profile. She has an appointment with her onc in two days and I’m definitely going to discuss immunotherapy with him, but it may come down to having another biopsy done, which would be tough for her. He did also mention that she may not be a candidate for any immunotherapy because she has pre-existing autoimmune disease? I’ve been trying to do some reading on that but haven’t really come across anything about that being an absolute contraindication. Has anyone had any experience with that situation? Also her dysphagia seems to be getting worse and it’s getting very difficult for her to swallow. Wondering if this is common and just part of the disease or chemo side effect that could maybe get better?
