My sister met with her oncologist yesterday and it was a rather difficult appointment. He told her that:
- It was not her that he was treating anymore, but her need to be treated.
- If she wanted, she could stop treatment altogether so as to enjoy a few weeks without side effects.
I'm sad because she was alone to meet with him as I'm still in SF, California (we're leaving this Saturday).
I know her oncologist is right in saying that more treating won't do much for controlling the cancer. However, she needs to know that 'something is being done', otherwise she starts having anxiety crises. She is not ready to give up and I'm afraid she never will (she just turned 46, in SF).
Dr. West and other Faculty members, I was wondering how you would handle such a situation? Would you be as blunt as her doctor was? Your job is a really tough one, having to balance medical and psychological considerations. You have all my respect.
Thu, 08/09/2012 - 13:16
You have always been so very supportive and have been an informed and involved advocate to your sister. That is priceless. The fact that you have worked so hard to educate yourself and follow along through every step is something that if I were your sister, I would cherish. I'm very glad that you will be able to see her soon.
I don't think the doctor intended to be harsh, it's just that the reality of lung cancer is harsh. I hope she will see the benefit of the opportunity to feel a little better physically without the side effects of treatment. As a patient, I would appreciate that kind of frank honesty.
I hope you know how much I have appreciated all of your support, and I am sending you all my love. This is one of those times in life during which we have the opportunity to experience something beautiful and profound. I hope her remaining time is spent focusing on the best parts of a life well lived, and not struggling over that which we cannot control. I wish you both peace during this difficult time.
With much love and respect,
Thu, 08/09/2012 - 19:19
I'm so sorry you and your sister are in this situation.
These are definitely difficult situations to have, and I certainly understand her doctor's argument. I don't know how he said it, and I hope he was as sensitive as he could possibly be, but I also think there's no good way to say what people don't want to hear.
I personally speak to patients about the point at which I'm pretty sure that we're more likely to cause harm than any benefit. That happens in just about every case at some point; sometimes it's long after we've exhausted all standard treatments, and sometimes it's before then, if a patient is doing very poorly and their cancer not responding well.
Most of my patients accept my judgment, I believe because I try to always be as forthright as I can be. Up until the point of me saying that I think we've reached a point where further treatment is considerably more likely to harm than help, I've been saying (and believing) that treatments can be helpful for them and are worth pursuing.
Not everybody accepts my perspective. Some may want to see someone else, or many people. Perhaps there's a legitimate difference of opinion. There is a full spectrum of styles in how heavily oncologists will treat patients. In fact, there's almost always someone who is either exceptionally optimistic or financially motivated enough to continue to treat someone who probably has extremely little realistic probability of benefit.
I think that in the end, no one oncologist is right for everyone. Some patients may never reach a point where they can accept not being treated, even if just about every qualified person explains that further treatment is futile. A patient is certainly entitled to their view, and I just personally feel that this doesn't mean that a doctor is obligated to give harmful therapy to satisfy a person's compulsion in the face of thoughtful advice that is truly in the patient's best interest.
Thu, 08/09/2012 - 21:12
Debra, Dr. West, thank you for your thoughtful answers and kind words. I just wish my sister never had cancer in the first place - I guess like everybody who writes on GRACE. What a terrible disease.
Thu, 08/09/2012 - 23:54
I'm so sorry about this...I am holding both you and your Sister very close to my heart...This is a TERRIBLE disease...You are so right. I absolutely hate it! Besides robbing us of our loved ones, it robs us of peace during whatever amount of time we do have with one another. I feel like I'm always waiting for the other shoe to drop - - which certainly is not a good way to live.
Again, I'm so sorry. . .
Fri, 08/10/2012 - 04:30
I have sat here at this computer for 15 minutes with a heavy heart, on what to say. We had that same meeting with the Onc as well last mos. Like Dr. West said some are not ready to stop, weather it's the right answer or the wrong answer, like my Mom. Just started Tarceva (being EGRF NEG), chances are 10%, Onc said no more chemo... but just know what an amazing sister you are and that she is so lucky to have someone like you really!
Wish you a safe trip on Sat.
Hugs from Jersey
Fri, 08/10/2012 - 07:16
Thank you for your support and kind words. I know both of you understand perfectly how I feel, having to deal with similar situations. I don't know what awaits us in weeks to come. I just hope that my sister does not suffer too much and I pray that her two daughters will be strong enough to make it through (they're both very close to their mother).
Please know that both your mothers are in my thought,
Fri, 08/10/2012 - 08:51
It is unbelievably hard to let go - for the person facing death and for their families. But you will not be separated before you need to be. When we stopped treatment, and the oncologist said "I'm so sorry", the thing that kept me going was the knowledge that my husband and my brothers would be there with me until the very edge of the river. That made it less frightening.
Without meaning to sound in any way glib, life off treatment (and off side-effects) can be weirdly liberating. In a way it is a positive option. I agree with Debra that you have a chance to make the end of your sister's life a time where she has everything she most wants - the view she most loves, her favourite music, relaxing with the children. And Sleepless, the same is true of your mother, although hopefully she may have some extra time on the Tarceva.
On the fear of physical suffering, I was less afraid of that, odd though it may seem, as there was a palliative care team whom I had already met, and I was confident that they knew their business.
This may all sound very Zen-like (which it wasn't), and it is absolutely right that there are some people who will never accept that more treatment is not going to help. Myriam I wonder if your sister feels she owes it to her children to go on trying? Maybe a discussion with a counsellor, or someone in a spiritual role, might help her let go of that sense of responsibility. While she's still alive, she can help prepare them for her death and for life afterwards. Who better than their mother, while she can?
I hope what I've said is not presumptuous. I used to have meltdowns which my husband dealt with brilliantly, usually by letting me howl myself into a state of collapse and then taking me for little walks. There are drugs and we did use them on occasion. To me, however, there was some reassurance in the fact that the sky did not immediately fall in after treatment stopped. All my best to you both.
Fri, 08/10/2012 - 09:15
CS, you don't sound presumptuous at all. You're right that my sister is, in part, fighting for her daughters. However, she LOVES life, and when I say LOVE, I mean it. As she explained to me about a year ago, when winter was starting, even an early fall of snowflakes looked beautiful to her. She's the kind of person who wants to live life to its fullest. The downside, I guess, is that she's never come to admit her own mortality (and I'm not being judgmental here, who knows how I would react under similar circumstances).
As I mentioned in previous posts, my sister is now the third in my family that we lose to cancer. My father died of lung cancer back in 1986 and my brother (34 year old), also died of cancer about 7 years later (it started with his tongue then generalized). So my sister was always afraid that this would befall her too (surprisingly, up until recently, I did not). And now, she's facing this...
Please forgive my rumblings. It just seems so unfair that I would lose half my family to this d... illness.
Fri, 08/10/2012 - 09:33
Myriam - As others have said, you have been an amazing advocate for your sister. I hope things go as well as they can as you all face these incredibly difficult times.
Fri, 08/10/2012 - 11:57
Myriam - I have sat here also trying to think of what to say.... sometimes I think it is harder for those left behind but that is a little presumptuous because this is so hard on everyone. I like to think that when I promised to Melissa - in the last days - that everything would be ok, that we all had this- including taking care of her husband and daughter, her parents, her dear friends - that she didn't have to worry, she relaxed a little. She never accepted what was coming but she finally let go, and I think she needed to know that everything would be ok after she had to leave. Melissa loved life fully also - I have never met anyone who did as much. It was almost more unjust because of that - if anyone deserved to live she did. I wanted to grow old with her (we always envisioned ourselves on a front porch, in rocking chairs, growing old with afternoon cocktails, muttering to each other...) as my friend (sister - like) and partner in crime. I believe she watches over all of us, just like she always did. (I am the furthest thing from a religious person...)
No one should have to go through any of this, and my heart goes out to you and your sister and family and friends. and to everyone who has a part in any of the stories here. I can't imagine what Dr. West goes through every day, and I don't think I could do it.
Operations Director for GRACE. Have worked with cancerGRACE.org since July 2009. Became involved as a caregiver to my best friend, and quickly came to see that GRACE is filling a need in the area of cancer education.
Fri, 08/10/2012 - 13:01
I am sorry to hear this news. It's not easy to hear that there isn't anything else to be done. I know Mark was not ready to give up either. He told me until the very end that we were going to beat this awful disease. I am very sorry that you have lost so many in your family to it, this disease show absolutely no mercy! I hope that your family can find some peace and enjoy your time together. Make some more beautiful memories in addittion to those you already have to carry you through. (((hugs))) to you all.
Fri, 08/10/2012 - 15:19
Judy, Denise, Lisa,
Thank you for your kind messages. It means a lot to me to be so well supported through all of this. I'm going to another appointment with my sister's onc this Tuesday - her insurance has accepted to pay for Cetuximab but her doctor said that he would reserve the right to say no to this (he's afraid that the side-effects will do more harm than good). I'll keep you all posted.
Much love to all,
Sat, 08/11/2012 - 04:54
Oh Myriam, It's so hard to hear that your sister has reached this stage with her onc. It sounds like he is set not to do more harm. I certainly can understand both stances. How absolutely horrible this whole disease is. I'm glad you're getting back to her and so sorry you weren't there with her. (speaking of which I must get to the farmers market now with a bowl for my sister who has her second time selling with her farm fresh free roaming chickens' eggs) I'm lucky to have the chance to be close with her again and you're making me realize that even more.
Sat, 08/11/2012 - 06:28
Myriam, I am so sorry to hear that you have already lost your brother, at such a young age. I had not realised that. Now you face the death of your sister, who sounds so full of life. It is completely humbling. I am glad for your sake that she has children in whom she will live on, but the loss of their mother is very hard to contemplate.
Maybe your sister will never come to accept her own mortality. Maybe acceptance is overrated. She has so much to live for, and it sounds as if her tenacity and determination have played a big role in keeping her going. As have yours.
I found Denise's description of sipping cocktails on the porch with Melissa both beautiful and funny - thank you Denise for the evocation of such an important friendship. My cousin and I (granddaughters of two very long-lived sisters) assumed something similar, and used to joke about ending up in sheltered housing together, squabbling. I have tried to compress all the cocktails into a short time. I do believe in that - that you can compress experience and live a lifetime in an hour.
I am wishing that for your sister, Myriam - as many snowflakes as she has time for.
Sat, 08/11/2012 - 20:35
Janine, CS, thank you for your kind words. I'll keep you posted on what happens next (although I admit I'm afraid of the appointment with my sister's onc this Tuesday - what a coward I am...).
Much love to both of you,
Sun, 08/12/2012 - 06:50
Put in that perspective, what cowards we all are.
Sun, 08/12/2012 - 10:43
Janine, that was meant for me alone. I was only thinking how brave my sister is in face of all of this and how, sometimes, I wish I did not have to hear such difficult news. Please don't take it personally.
Sun, 08/12/2012 - 12:48
I know and I wouldn't take it personally.
Mon, 08/13/2012 - 01:43
At the risk of sounding like a psychologist, I think it's a good thing - and not cowardly at all - to acknowledge how frightening these appointments can become, for family members and partners as well as patients. I got to the point where I was so paralysed by the fear of more bad news that I would be shaking as I tidied myself up to see the oncologist. My husband says that I still cannot get out of the clinic fast enough. These are justifiable fears.
Thinking of you Myriam.
Mon, 08/13/2012 - 03:26
Thank you CS.
Mon, 08/13/2012 - 08:29
I think that in addition to being a full-fledged coward (which is acknowledged), I also have developed PTSD (post-traumatic stress disorder). I hear the word "cancer" these days and want to run for the hills. . .
Mon, 08/13/2012 - 08:38
I agree with CS, wholeheartedly. I know that these were the hardest times of my life - I don't think that anything could ever be as hard. You are so so not a coward, but I understand the feeling. and Laya, sadly, - that feeling never goes away.
Operations Director for GRACE. Have worked with cancerGRACE.org since July 2009. Became involved as a caregiver to my best friend, and quickly came to see that GRACE is filling a need in the area of cancer education.
Mon, 08/13/2012 - 11:06
Dr. Harmon wrote an article a couple of days ago about fatigue and stress of the patient. As a caretaker, I can relate to the fatigue and stress. I used a phrase in the past when I take risks: I have anxiety but I am not afraid. To be frank, as a caretaker, I have anxiety and am afraid.
I asked Dr. Harmon for suggestions for the caretakers. She should be back in a couple of weeks. Hope what she provided then will be useful to all the brave caretakers!
Mon, 08/13/2012 - 12:52
Wadvocator, what a wonderful idea! I must admit that I could do with a bit of support for myself nowadays, or at least some advice as to how to navigate as peacefully as possible through all of this.
Laya & others, I apologize about using the word 'coward'. It was certainly not meant to make any of you feel bad. I was just thinking aloud...
Much love to everyone for your kind words and constant support,
Mon, 08/13/2012 - 13:46
Dr Harman wrote a thoughtful post last year about caregivers, which attracted some interesting comments from GRACE members:
There is also a wonderful thread, started by the Geezer (hope you are still out there, Geezer), to which Myriam and waadvocator both contributed - also Laya, B1-83 (hope you're doing OK, B1-83), Denise and others. I found it extremely moving and a really valuable insight into life "on the other side":
Myriam, this is your thread and you should feel free to say whatever you like here. Nobody is going to be offended or upset. Cancer makes cowards of us all - that's how I interpreted Janine's words. We're all here for you and want to help you through this awful time. I think you've been very brave in admitting your fears and your sense of not being equal to the task. You're going to rise to the occasion because that what love is. But do lean on us if you want. Everyone on this thread is here because they want to be here.
Mon, 08/13/2012 - 13:59
Myriam, I hope you won't worry that you've said something wrong or hurtful. That's a perk when you're being supported by others in similar situations, you get to think aloud. On the other hand we get to comment on your innermost thoughts.
I'm behind on my reading of the most recent posts. That's a great suggestion w ad.
I wonder if you've read this post she wrote last year.
I wish and hope,
Mon, 08/13/2012 - 14:40
I have read Dr. Harmon posting of last year. It all makes sense intellectually. I am hoping for advices and tools that can take it down to the execution level. I was hoping for something liked a "to do" list. I can adapt and adjust the lists and plan to fit. With all the stuff I am dealing with as a caretaker, I really can't think straight to come up with plans/tools/ideas....so would be great to piggyback on specific actions past caretakers have taken during the journey or reflection on the journey and what things they would have done for themselves.
I am wondering about palliative care. From my reading, it appears to be a holistic approach in recognizing that the patients and the family and the caretaker all need support during the journey
Mon, 08/13/2012 - 15:11
Everything you said is right. I really fail at taking care of myself for over 2 years. There were 2 things that have helped me tremendously. 1. I started taking an antidepressant that was suppose to take up to 6 weeks to work. It took less than 6 hours! I've been taking it, paxil, for at least a year and it makes an incredible difference in every moment of my life (BTW, 4 years ago I never thought I'd say that). 2. The other thing I've done is I'm doing yoga 3 times a week from a dvd in a friend's living room. We used to dance together about 25 years ago and each time we finish class we are both amazed we did it.
Mon, 08/13/2012 - 15:36
It's absolutely true that among the differences in the palliative care mindset is that there is a broader focus on providing support for the patient as well as their family and friends who are helping and all affected by a person's illness.
Tue, 08/14/2012 - 07:59
I'm here too, watching for your update.
Tue, 08/14/2012 - 10:16
Here's the link to the caregiver support thread that was started here and split to give everyone the freedom to respond. I hope it continues.
Tue, 08/14/2012 - 12:42
Debra, thank you for your kind words.
Janine, thanks for creating the caregiver thread.
Update: surprisingly, the appointment with my sister's onc this morning went fine. He said "You remember what we discussed last week" (to which she said yes) and then "You've slept on it but you'd still like to get the treatment", to which my sister agreed, and he said that he accepted to sign the forms for her to get Cetuximab. She's already taking Afatinib, receiving it through a compassion program, so she'll soon be on the Afatinib-cetuximab combo. I'll let you all know how this goes. If it does not treat the cancer, at least it gives her some hope and that what she most needs now.
Take care everyone,
Tue, 08/14/2012 - 17:16
I've heard afatinib-cetuximab doesn't have much activity in the brain. But I have no data regarding that. I wonder if your sister has a resistance mutation? T790m or some other mechanism of resistance? Has anyone mentioned Temodar for her brain mets?
You can tell I've also not stopped fighting for your sister. However I tearfully feel both your and her pain, as a patient and a caregiver. I wish you the strength of Atlas today, and every hour hereafter..."the serenity to accept the things you cannot change and the courage to change the things you can". I wish you the wisdom and power to comfort your sister and family down the best path possible. You are both amazing.
Tue, 08/14/2012 - 17:18
Sorry, auto-spell keeps changing your name, Myriam!
Tue, 08/14/2012 - 17:48
Dear Jazz, thank you so much for your kind message. I know that none of these treatments will have much effect on the brain mets - and I mentioned to my sister that GRN 1005 could be more effective - but she does not want to try GRN 1005. So I'm not pushing for this anymore. Just trying to be there for her.
You're an amazingly smart, strong and compassionate lady,
Tue, 08/14/2012 - 23:51
Myriam, I am hoping for more snowflakes for your sister as well.
The afatinib/cetuximab side effects can be challenging -- especially the incredibly dry skin. But that creates an opportunity for friends and family to offer loving and soothing touch, helping to massage and moisturize those hard to reach places.
My father died as a result of lung cancer in 2000. He declined rather quickly over the course of three weeks after successfully managing his disease for 2 years. I made it a point to spend a lot of time with him over the course of his illness (he lived in NY and FL and I live in VA). I really treasure the days we spent sitting, spending time together in the final weeks (during which time he really didn't suffer, except from fatigue and recurring lung fluid that needed to be drained). We drank jamocha milkshakes, played his favorite music (he was a theater organ restoration hobbyist so some of that was pretty vivid (but we were used to it), and watched television. It made living in the moment a real blessing that I still treasure today.
None of us is a coward, but we all have cowardly moments. They pass so that our nobler spirit can prevail.
My heart goes out to you all.
Wed, 08/15/2012 - 09:12
Dear Blue Skies, thank you for your beautiful message. It's funny, your story reminded me of a personal anecdote. When my father passed away I was 21 year old and still living at home with my mother (I had recently started university), and was taking care of my father with my mother, in turns.
One day, my father asked me to come to his bed. When I came he said he'd like us to eat some chocolates together, so I ran to the pharmacy to buy a chocolate box (we're ALL big chocolate lovers in my family...), with tears in my eyes. When I came back, we ate a few together, him in lying in his bed and me sitting at the bottom of it. Somehow, your story reminded me of that nice moment...
Thanks for sharing your memories with me,
Wed, 08/15/2012 - 09:23
I just read your update on Debra's thread, so I just wanted to wish you all the best with upcoming treatments/trials. You're a wonderful person,
Wed, 08/15/2012 - 10:04
Myriam, It's great to hear about the positive tone of the meeting. He sounds like a very perceptive and accommodating doctor. You know, it could work.
I'm so impressed with the wonderfully difficult and encouraging words our fabulous women have given you. I love you all.
Wed, 08/15/2012 - 10:47
Thank you Janine (and you're clearly part of those faboulus women!)
Thu, 08/16/2012 - 13:44
I am in tears reading your update re your Sister's last doc. appt. How brave you all are! And, I commend your Sister's Doc. for being candid and honest about further treatment - - but even more so for recognizing his or her patient's needs (mostly psychological) despite the odds against benefiting from further treatment. My fingers are crossed and double-crossed that your Sister will see benefit from her new treatment and that the side-effects are minimal.
Fri, 08/17/2012 - 14:58
Laya, you have such a big heart. Your words of comfort mean the world to me. You're one of the most generous soul I've ever come across. Take good care of yourself and please know that I often think about your mother, wishing you and her the best,
Fri, 08/17/2012 - 16:32
Myriam, I'm happy to hear that the doctor respected your sister's wishes. Like Janine said, it could work. Who knows, right. Here's to few side effects, and measurable results.
Fri, 08/17/2012 - 16:39
Sun, 08/26/2012 - 04:19
Just wondering about your sister, Myriam - how is she getting on?
Sun, 08/26/2012 - 05:33
Hello CS, thank yo for asking. Things are a bit difficult at the moment. My sister's right lung is so full of fluid that it's making her really uncomfortable. She will be calling her onc this week to see if he could not drain it. She's also feeling much pain so she had to significantly increase her fentanyl patches (to 200 mg per day I believe) and still, the pain is so bad that she takes hot baths two to three times per day to ease the pain.
She will have her first injection of Cetuximab this Thursday in Montreal. I will be going with her (it's a two-hour ride from where we live so I hope she is not too exhausted when we come back). Unfortunately, we just learned that although the Cetuximab is covered by her insurance company, the injections (by a nurse) are not. It will cost her $200 per times that she receives Cetuximab (once per week), so that's really expensive - I don't know how she will afford this over the longer term.
That's it for now. I hope things are going fine on your side,
Sun, 08/26/2012 - 06:53
Thank you for the update Myriam. I'm so sorry things aren't going smoother. Has your sister a prescription for oxycodone or morphine. The different opiates behave differently on different people. So she may get good relief from one but not as good from another.
You remain in my thoughts,
Sun, 08/26/2012 - 06:56
Yes, thank you for the update. I am so sorry about the pain and hope the lung can be drained. Oral morphine certainly worked for me when nothing else did.
It seems outrageous to charge $200 for an injection. However I won't help by being outraged so I will just wish you luck for the trip on Thursday. Thinking of you both.
Sun, 08/26/2012 - 11:11
Oh, Myriam, I'm sorry to hear that your sister is having these difficulties. Are there no organizations or charities that can help her with the extra cost? Or can she be taught to do the injections herself?
Sending love and warm hugs,
Sun, 08/26/2012 - 11:39
Thank you Janine, CS, Debra for your words of comfort, I really appreciate your kindness,
I'm trying to stay as positive as possible but I am really worried about my sister. I had my aunts and cousins over for brunch today, as well as my sister and her daughters, but my sister was in so much pain that she was able to stay for only half an hour. I just pray that things go for the best for her, but what 'the best' might be, who knows...
I'll keep you posted.