Oh Myriam. . .I'm so sorry about this. . .I hope that your sister's docs can get the pain managed very quickly. . .
I HATE CANCER!
I mostly wanted to say that I'm sorry about her discomfort, but I also wanted to just suggest that if she's having a lot of discomfort with a frequently recurrent pleural effusion, perhaps there's someone there who can place a PleuRx catheter. Many patients find that this gives them a good ability to control the timing of draining the fluid themselves at home, so that they avoid long intervals of discomfort and also have the assurance that they can control the situation, rather than be at the mercy of work schedules to get in and get a thoracentesis done when they need it.
Dr. Howard (Jack) West
City of Hope Cancer Center
Founder & President
Global Resource for Advancing
Laya, Dr. West, thank you for your kind words.
Dr. West, thank you for the suggestion. I had mentioned the catheter to my sister (having read about it on GRACE) but she did not seem too keen. I'll mention it again when I see her as I believe that you're right, it must be helpful for those, like my sister, who have recurrent (and painful) fluid in the lung.
Thank you all for your support,
Myriam, besides the PleurX catheter -- great idea for owning control plus immediacy of comfort -- perhaps your sister would find her need for treatment satisfied by turning to the mind-body connection. Active visualization, guided imagery, and relaxation techniques are often overlooked as a form of treatment. These can be effective, even to the point of complete remission of advanced disease.
Many books and CDs are available on the subject at the library or in bookstores. I highly recommend the website of Jerry White, who is happy and healthy and in his 80s as a cancer-free survivor of Stage IV renal cell carcinoma. He studied the mind-body connection after standard therapy did not work. I have known Jerry for years. He does this work without profit strictly to help other patients. He has a very relaxing, reassuring voice which is great on his CD, which has now been engineered to synchronize the brain's alpha waves.
I have personally known another patient who used this method. He was an advocate of self-hypnosis to make the visualization feel really real. He also said you have to reserve time each day to do it; accept no interruptions, make it an invariable part of your routine, because your life is worth this effort. He lived a happy life for over 20 years after a diagnosis of Stage IV colon cancer, dying at last of old age with his cancer still gone. He learned to self-hypnotize by going to a therapeutic hypnotist.
The mind-body connection shouldn't be seen as a last resort. Anyone can use it at any time along with any standard treatments. Unfortunately, many people won't try it until they have nowhere else to turn -- and even then they may reject it as too "out there." There are clinical studies showing good effects. When you have no other port in the storm, why not? Can't hurt, might help, costs very little (mostly your own time).
I hope this can relieve your sister's very understandable need to be doing something.......Robin
Robinm, thank you for the suggestion and for caring,
Just wanted to wish you and your sister all the best on tomorrow's appointment. I hope she can get some relief from the pain and pleural effusion. Did I understand correctly that she'll receive cetuximab every week? Is there a way to obtain financial aid for the $200 nurse fee?
Keeping you in my thoughts,
Thank you Jazz. Yes, she'll be receiving Cetuximab weekly (if it has any effect). We're trying to see what we can do with the nurse fee but I doubt we'll be able to have those costs covered.
I just came back from my sister's appointment with her onc and they decided that she was going to get a 'Pigtail Catheter' to see if they can drain her right lung. If it works, then she would move to getting a pleurex catheter, a more permanent solution (I'm glad her onc mentioned this option, as this was one of the suggestions made by Dr. West when I had mentioned my sister's problems here on GRACE).
Her onc did mention, however, that the drain may not work (which is why he wants to calculate the amount of fluid drained daily - the catheter will be installed for 5 days). Let's hope that it provides my sister some relief.
The results of my sister's blood work were good, except for her 'LDH' levels that were increasing. Her onc told us that this is not a result specific enough for him to know exactly what is going on, but that he'd be monitoring this closely. I was wondering if this LDH business rings a bell to some of you (although I'm not sure that the acronym is the same in English). If so, I'd be really grateful to understand better what an increasing LDH level can mean.
Thanks for your help, as always,
It is the same in English - there's a thread about it here:http://cancergrace.org/lung/topic/lactate-dehydrogenase-levels/
Dr Weiss has nickname for it - "Low Diagnostic Help". Dr West says (quoting from the thread above): "LDH is among the least specific markers out there, and it’s abnormal in many settings. So being elevated doesn’t convey much more than “I’m sick and not just malingering.”" He adds that one could probably obtain as much or more information simply by talking to a patient about how they are doing.
I really hope the catheter works for her.
LDH is lactate dehydrogenase. Elevated LDH is associated with poorer prognosis in cancer patients. LDH is an indicator of tissue damage, and there are conditions other than cancer that can cause it to go up. I hope this turns out not to be a big thing................RobinM
CS, RobinM, thanks for the info.
CS: I'll keep you posted on how the draining goes.
I hope the catheter works, but her oncologist is right that it doesn't work for everyone.
And yes, an LDH isn't really an especially helpful marker...just a very nonspecific marker of many kinds of illness.
Dr. West, thank you for your answer. I'm crossing my fingers for the catheter to work.
Myriam, just want you to know I continue to keep you and your sister and your families in my thoughts.
I hope she will get lots of relief with the procedure.
Thanks Janine. Glad to read (in your signature) that your husband is still doing good.
BTW, does anybody know if someone who has a permanent catheter can empty it on their own or if they need to go to the hospital every time?
From what I understand it is done at home. Of course I could be wrong.
I had a catheter inserted to drain my pericardial effusion, and I (actually my Mom) drained it every few hours, measured and recorded the volume of fluid. Once it got down to a manageable volume, the catheter was removed. Based on that I would guess one would drain the catheter themselves...
I hope this intervention works for your sister, Myriam, and doesn't result in intolerable pain in the pleura. Best wishes for relief and stability - I can imagine how much it means to have some modicum of comfort - for your sister and for you.
Jazz, thank you for explaining how it was for you. I also hope that the catheter decreases, not increases, the pain level.
Take good care of yourself,
I'm sorry I haven't posted anything, because I don't have anything to offer but prayers your way. Just wanted to let you know that.
As you could see by my signature, Mom had her's drained a couple of times by the Radiologist and or the Lung Surgeon. Than had the Talc procedure done to prevent it from happening again. It was never offered to have a home drain.
Stay well and God Bless
Sleepless, thank you for your kind words. Best wishes for your mother,
Just wanted to pop in and wish your sister (and you) continued luck. I hope that the catheter helps your sister - - we are exploring similar options, which I will update on my Mom's Update thread.
Much love to you all,
Thanks Laya for your kind words. I'll read the update on your mother. I hope she's doing OK.
My sister had a pigtail catheter installed on Monday...and taken out yesterday. It was starting to hurt her and anyways they were not able to drain much fluid (375 ml Monday, 178 ml Tuesday and only 118ml Wednesday). Unfortunately, her lung is really hurting and she told me that she's out of breath plus she has the impression that the fluid came right back. What they drained was dark red (the onc said it was blood and probably dead cancer cells). We also had the results of her MRI and her brain mets are growing, but slowly, so it's wait and see on this side for now. She's still on Afatinib/Cetuximab and tolerating it well. She's leaving for Haïti for two weeks with my mother this wed. (October 9).
I have a quick question for Dr. Pinder (if she's available). I was wondering if she had preliminary results for GRN-1005 (the compound that treats lung cancer + brain mets). It's finally showing up on Canada's official trial cancer site with Dr. Hirsh (McGill) as the contact (my sister met with Dr. Hirsh last fall).
Thanks in advance for your help Dr. Pinder,
I just want to send along my best wishes to your sister and you. I hope she and your mother have a good time in Haiti, can't wait to hear abour her trip!
Myriam: I hope your sister has a great trip and really really enjoys herself. I too am curious to hear what Dr. Pinder has to say about the trial drug.
I'll send out an email to Dr. Pinder now.
WOW what a trip, good for them! Sending lots of sunshine your way.
Thanks for your kind words everyone!
We don't have any preliminary results on this particular trial (which includes only lung cancer patients) as the trial is still in the early stages. However, we did see some encouraging results in the phase 1 trial, which included a variety of cancer types, including lung cancer. The drug can work both in the brain and in the body.
I've included a link to the abstract from the phase 1 trial below:
Best to your sister,
Thank you very much Dr. Pinder!
Myriam, I am saddened to hear that you sister is having these difficulties. I think we patients all want to live the richest, fullest life possible, but this stupid disease just keeps getting in the way and spoiling the party. I hope she is able to have a wonderful vacation, and it is good to hear from you again, even if under these circumstances.
Thanks Debra. It's difficult for now. Let's hope that there is some light at the end of the tunnel,
Dear GRACE friends and doctors,
My sister passed away last night at the intensive care unit. We were fortunate enough to have a few hours with her: my nieces, my mother, my other sister, brother-in-law and a number of friends.
I can't tell you enough how much your help meant to us all. Without GRACE, my sister would not have had those three extra years which were so valuable to all of us.
Dear Dr. West, Dr. Weiss, Dr. Pennell, Dr. Pinder, Dr. Loiselle, Dr. Sequist and others you have been so wonderfully generous with your time, knowledge and kindness.
I will likely be off line for a while, if not indefinitely, but Dr. West, please rest assure that I won't forget GRACE.
Much love to all,
Myriam, I am terribly sorry for your loss. My thoughts are with you during this difficult period.
I am so so sorry to hear this. I can only hope that you all are able to find peace, and it is so good that your family is able to all be together right now. I am not a religious person, but I am pretty sure that the people we love watch over us in some capacity. They are still around.
Many hugs -
Visit my bio here.
I am so sad as I think of you. It was clear what a wonderful relationship you and sister had and I can only imagine what you are going through. It was truly an honor to have any small part in helping you and your sister.
All my best to you,
Myriam, What sad news to bear that your sister is gone. I know it was a gift for your sister to have her loved ones with her as she passed. You and she have had such a special life together and you were both lucky to have that. I hope for peace for you, her daughters, and family and friends.
With love and peace,
Your love and loyalty to your sister have been so touching. I wish you strength to cope with your grief and that of your family.
I am so sad to hear of your dear sister's passing. I knew her only through your posts about her, but knowing that she has such a loving sister so tirelessly dedicated to her cause, I feel certain that the world has lost a very caring and special woman.
Sending you all my wishes for peace and comfort,
<p>I began visiting GRACE in July, 2008 when my wife Liz was diagnosed with lung cancer, and became a forum moderator in January, 2010. My beloved wife of 30 years passed away Nov. 4, 2011 after battling stage IV lung cancer for 3 years and 4 months</p>
Myriam I am so sorry. I haven't talked to my sister in about 15 years. Don't even know where she is. What you had was special, and you were incredibly involved and supportive. I don't think she could have asked for a better passing. Much love to you. I hope you are able to focus on the good memories. We all can understand why you would want to put cancer behind you, but know that you will be missed.
I want to add my voice to the chorus of people expressing condolences along with just wanting to convey what a touching inspiration you have been in your tireless dedication to her best care. We're thinking of you.
I am very sorry to hear of the loss of your sister. I know you will always treasure the relationship you had with her. And I am just as sure she did the same. Take care of yourself and know that I will be keeping you and your family in my thoughts during this difficult time.
Oh Myriam, I am so very very very very sorry. This is beyond heartbreaking. I wish you and the rest of your Sister's loved ones peace. You have been such a tireless advocate and information-gatherer for your Sister these past few years. Please know that you did everything in your power to help your Sister and that she was much much much better for it. This blasted disease is just relentless. . .
Please take care of yourself. . .
With an extremely heavy heart,
It's been a long and winding road for your sister and you. My heart goes out to you and your family and friends, and especially her daughters. May they look to you for the memory of your sister, and may she live in your heart with all the beauty and determination she embodied in her young life.
Peace to you and your family. Your kindness, strength, and wisdom will be missed on GRACE, but we all wish you power and healing through this season of sorrow. And if we don't see you before the holidays, may joy and happiness find you and your family through the new year.
A sister is a gift to the heart, a friend to the spirit, a golden thread to the meaning of life. ~Isadora James
Love and light,
Myriam---so very sorry your sister died---what a loving relationship you had with her. Thank you for sharing your sister's story with this dreaded disease that continues to take our loved ones.
Myriam....I have been sitting hear staring at this computer, trying to figure out what to write than erase it, than write again. There is nothing that just seemed to be the perfect thing to say, than I am truly sorry for your loss! I unfortunately don't have a sister, but if I did, I would hope that she would be as amazing as you were to your sister.
Everyone, you've been so very kind throughout those past three years, words can't convey enough how grateful I am for my GRACE friends. I wish all of you, and your loved ones, the best. Thanks again for writing to me, your kind words gave me much comfort,