A quick update.
I received my fourth round of Navelbine yesterday and I’m feeling incredibly rotten today. We’ve now confirmed that this drug is not working (at least as a single agent), so I probably will not have to put up with it much longer.
Yesterday I learned my liver tumors are too big to do the ablation procedure we had hoped (please see update on 11/7 for some corrections to this paragraph). Instead, later today I will be evaluated for a more complicated procedure called Yttrium 90 radioembolization. I will learn more about it today but the general idea is that a catheter is snaked up through the groin to one of the two blood supplies to the liver. While the liver usually gets 75% of its blood from the portal vein, when there are tumors present they often get almost all of their blood from the hepatic artery. The interventional radiologists insert radioactive beads of glass or plastic into that artery so when the tumor gets its blood supply, that supply is radiated and hopefully shrinks the tumor locally, without disruption of healthy cells in the rest of the body. Only one tumor can be treated at a time. It is not a cure, it is just palliative for these metastatic tumors to try to stabilize them or reduce them. I will also need to be off chemo for a week on either side of the procedure.
I also need to be seen tomorrow by the cardiology team at Sloan-Kettering for another opinion on my pericardial fluid situation now that I am having some symptoms and have had more imaging done. They will decide if we need surgical procedure to drain the fluid and biopsy it. It is probably malignant but we can’t be sure. If they don’t feel we need to do any intervention right now, we will watch and wait.
So, we have some big decisions to make including what chemo to go to next. I won’t go into those options here now. First I need to deal with these more pressing issues of the liver and the heart. I had hoped to be able to rest and get through these difficult post-chemo days at home but the appointments mean pushing myself beyond what I really think I’m able to do sometimes. But I have to get answers and be able to get scheduled for what I need when I am hopefully feeling a bit better next week.
Once we have some decisions made about it all I will report back. Things just don’t seem to go the easy or simple route and I’m getting used to that. For now I am going to try to conserve energy and stay pretty quiet. Thanks to you all for your continued support.
Link to Twitter
It amazes me how strong you are and how you are able to talk about what is happening to your body in such a calm and scientific manner. I really don’t know what to say except that you are in my prayers.
thank you again for your blog. I am amazed by your clarity, eloquence, and ability to explain and examine painful truths. I wish I could do something to help you during this
journey.
The liver procedure is astounding. So many clever treatments. As always, I will continue to hope for the best for you.
I hope that you can get the liver and cardiac issues sorted. It’s the liver mets that are causing problems for my husband. His original tumour doesn’t appear to have grown. We’re waiting to hear on either ablation or radioembolization. I’ll keep my fingers crossed for you.
Sending hugs.
Sue
xxx
I will be wishing you and your husband well also.
Lisa do whatever you need to do to conserve your energy; we will always be here, caring for you in our hearts, and thinking about what a truly amazing person you are. I’m so sorry you’re not only feeling rotten but that you have to deal with so many appointments; I admit I often feel helpless to say anything meaningful to you. I know that prayer is not something you believe in and sadly neither do I. So in the meantime, in the midst of the most rotten times, I will wish for not only success in your palliative treatments but also in even the smallest of victories, the tiniest of pleasures for you to enjoy – watching your beautiful children, just being with your husband – whatever makes you happy during this unbearably difficult time. Xoxo
Lisa, I saw a program just last night about the radioactive bead procedure. As a nurse I was amazed by how it worked and by how well the patient (albeit with different situation than you) tolerated it. I continue to wish you the best.
Damn. Thinking of you. Here if I can help. xoxo
My eyes were trying to read your first sentence as “feeling incredibly good today”. It took me a second reading to realize that was not what you wrote, but what I was wishing you had written. My heart goes out to you.
May peace and blessings surround you. You have done and continue to do so much good by sharing your story without self-pity. Thank you.
Lisa, I’m thinking of you now and always. You are stronger then me. I was so upset about going to the doctor 3 times last week and was crying and depressed. You have showed me to live longer we have to get up and go. I want to live longer. I wish I could help. I am praying for you for good rest and strength for the up coming procedures.
Tough times for you and your family, Lisa. Keep your iPad handy: it seems to me Twitter offers an opportunity for friends and others to drop a quick little bit of support and maybe a little joke here and there – and it clearly offers you a chance to share a little humour, which you do so well. It sounds so simplistic to say right now, but laughter can, indeed, be the best medicine.
Thinking of you Lisa and sending hugs from Ireland xx
Lisa, how large is a liver tumor considered too large for an ablation procedure to be done?
I hope you and your treatment team are able to find a drug(s) that will allow you to have more energy. Thank you for continuing to educate me.
Usually an individual tumor of greater than 3 cm is considered too large, but I believe there is a range up to 5 cm where it might still be performed. Not positive on that upper range.
So sweet you get mothers day gifts! I love it!The pasta looks great, I'm so pumped that asagparus season is almost here. I'm going to a market on Wed. hoping to find some.Had a great weekend shopping and visiting with friends. have a good week.
Someone should go on there and ask these noodleheads if children born in the United States between 1776 and 1787 were “Natural Born Citizens”.That will lead them down the primose path of idiocy.
Patience and tenacity are yours. I am sending love from a state North.
Lisa, I am so sorry to hear this. You truly have unparalleled resiliency. The education, heart and integrity that you share with your readers is invaluable.
I hope you feel better soon.
Oh, damn.
Sending you love and hoping this set of procedures goes well and sets you up to feel better.
xo
Oh Lisa,
Issues don’t get any more pressing than this. I thank you for even taking the time to update us when there’s so much to sort — plus you’re not feeling well at all. You are clear and articulate as always. Sending you much love and strength. I think of you daily.
Love,
jody
Sending loving, comforting thoughts your way and hoping a clear path forward reveals itself.
Lisa, my thoughts and prayers are with you and your family. I hope you will be blessed with peace and strength. I am awed by your grace.
Everyone thinks we are so courageous but this is the choice we made for treatment so we have to bear it. By what other choice is there. I hope that light and love reduce some of your suffering.
A fellow stage 4.
Wishing you the best. I hope you know how helpful your words are to so many. Not just those living with cancer, but those who are trying to learn the right way to be supportive to our friends and families with the disease.
Sorry to hear of these additional ailments and trials, Lisa. Hope some of these measures bring some relief. Thinking of you often.
Yours,
David
I’m glad there are still things to try Lisa. Hope you can get some rest in between everything that is going on.
nothing can be said… As always, thinking about you daily. Sending you love and support.
Lisa,
With best wishes that future treatments will be of much help to you.
You are a remarkable woman and are in my thoughts.
Sincerely,
Barbara S.
xoxoxo
So sorry things did not go better for you this week. I hope that you will soon find the combination of treatments that will work. I also admire how strong you have been through all of this.
So sorry to hear navelbine is not working for you. I am on navelbine, too, and had my scan yesterday. I get the result next week, but I am not very positive either, because my marker goes up.
I hope the radioembolization will be an option for you. It is possible here in the Netherlands, too, though they treat the whole liver at once instead of met by met (as you describe).
Hope that new treatment options will make you feel better.
I wish you luck on your scan results. Waiting is SO HARD.
To clarify, the Y90 radioembolization does not treat met by met… the beads are drawn into the liver and work on a large portion of the liver (one treatment for each lobe). Met by met treatment would be done as external beam radiation.
Hi Lisa
Omgosh, so sorry to read that the treatment has stopped working for you, and that you have to go through more unpleasant procedures…. I keep having to resist the urge to say, you are so incredibly brave, but really, what else can one do if the will to live is soo strong.. You are a true inspiration to many, as I believe many would have given up by now, but you’re grace and strength to keep going is amazing… and through it all, you find the time to write and update everyone with your journey…. Awe inspiring!
Lisa, I am sorry that so much of your world revolves around medical crap. I wish so much that you could just have at least one day where it is not a part of your world and you have energy to do whatever you want. Hang in there. You are well-loved!
I was wondering if Sloan-Kettering does that procedure on pancreatic tumors and if so, do they put you under completely? My mom had the ablation for her pancreatic tumors and they kept her awake, yet sedated. I just wondered had we gone to NYC, would they have put her under as I was hoping for. Lisa, even in your illness, you continue to educate us all and we are truly grateful. Hugs!
Don’t know if it works on the pancreas because the blood supply to the liver is unique. That said, you are not under general anesthesia. It is a groggy sedation but you have to be able to follow instructions for moving and breathing when they move you to nuclear medicine. So no, that would not have been different. Hope that helps.
Ruthie, just to clarify, I am NOT a candidate for ablation. The procedure I need is called Yttrium 90 radioembolyzation — and that is what my answers reflect. But for ablation I am also quite sure they do not use anything other than what she got.
Lisa,
Thank you so much for responding. That helps me understand why my mom couldn’t be fully asleep. I appreciate the way you can take complicated medical topics and put them so wisely into words we can understand and learn from. I am OH SO thankful for you, for sharing with others, this journey. Your beautiful words have changed us. Because of you, we look daily for (and appreciate) the bits of beauty in life we might otherwise have missed. I
am humbled and honored that you took what surely must have been a lot of energy to take time and write back to help me understand something I needed to. My heart is full of gratitude and hope.
I’ve thought about you every day ever since I started reading your blog, shortly after your cancer metastasized. I would just like to add my voice to your other readers who have come to respect and care so much about you. Your blog is immensely instructive and has created a caring and supportive community. Your honesty, eloquence, calm strength and grace under pressure shine through in your posts and tweets about your setbacks, your pain and rotten days, your wish for more time, what amuses and outrages you, and your love of beauty and appreciation of the moment. AND you are refreshingly secular and don’t overuse exclamation points. You’ve inspired me to be a more appreciative mother and a more informed to my dear friend with breast cancer. Thank you Lisa.
Deborah
I love the line about exclamation points. Totally made me laugh. Thank you for the kind words (I wish I could thank everyone).
You are an amazing, inspirational woman, your courage and strength are so very humbling, as painful as I know they must be for you, your honesty in your updates, is in a strange way cathartic for me, and people like me, who have lost loved ones to metastatic Cancer, I can not thank you enough for your bravery in sharing your journey. You and your family are always in my prayers.
Deborah’s comments nailed it: “Your honesty, eloquence, calm strength and grace under pressure shine through in your posts and tweets about your setbacks, your pain and rotten days, your wish for more time, what amuses and outrages you, and your love of beauty and appreciation of the moment. AND you are refreshingly secular and don’t overuse exclamation points.”
I wish we could wave a magic wand for you. I wish. I wish. I wish.
Lisa,
Thank you for instructing and inspiring me and so many, not just about metastatic breast cancer but about doing your utmost to live each day to the very fullest, even when things are just crappy. I too wish we had a magic wand. Sending you peaceful thoughts and best wishes for treatment that yields some good results, and time, time, time with your dear family and friends.
Thank you Lisa for your honesty, education and strength, as always. I hope your appointments go well this week and a plan is expeditiously put in place. My mom had Stage 4 breast cancer and your blog and Twitter posts provide me with insights into the decisions,thoughts and feelings that go hand in hand with cancer. Thank you for your writings that reach and educate and influence so many.
Dear Lisa, Like all of the others writing here, I feel enormous respect for your unblinking honesty and willingness to share the difficult details of your daily life. I find myself talking about you and your blog almost daily with my friends and family, sharing your insights about medicine, raising children, finding beauty in the world, and simply persevering even when it means, as you say, “pushing myself beyond what I really think I’m able to do sometimes.” Today’s news filled me — and, no doubt, thousands of other silent witnesses to your life — with anguish. Enough already, I wanted to shout to the universe. I hope that the coming days bring you some good news, effective treatment, relief from pain, and much joy with your family. For all of us who have come to care about you, that would truly be a thing of beauty: time and more time for Lisa Bonchek Adams.
I care deeply and am thankful for the updates.
Wish you had better news, hope you get a finalized plan soon.
Starting following you after reading that horrific article in nytimes. As a doctor (emergency) and an advocate of pallative care, I am so impressed with your attitude, honestly and how well you have educated yourself (and others).
You have taught me a lot about advocating for patients and helping them advocate for themselves.
This country needs a tutorial on pallative care. I trained in Australia and everyone who received a diagnosis of a potentially terminal or long term disease received a pallative care consult. Did not matter if you lived 20 days or 20 years, they helped improve both patient’s quality and quantity of life.
You inspire me and have made me a better more compassionate doctor.
Keep doing things your way!
So many people have expressed the same thoughts I had when I read your update. I could repeat all of that, but mainly I want to say that you’ve touched my life, and I am grateful for that. Each day I try to find and/or create some beauty in this world, perhaps not well, but each day I try.
“I don’t expect to be happy all the time. It’s gotten beyond that somehow. Wish me courage and strength and a sense of humor. I will need them all.”
-Anne Morrow Lindbergh, Gift from the Sea.
Read this and thought of you. I’ve often tried to imagine the suffering Mrs. Lindbergh endured when her son was kidnapped from his crib. Of course, it’s impossible for me to even get close to her raw pain. I feel the same about you. But, I will follow her directive and wish you continued courage and strength. I won’t push it on the sense of humor.
These essays and poems that you are writing are powerful. They are in the truest sense your legacies to your children.
Dear Lisa, as always, I haven’t a clue !
Just wanted you to know that you are thought about in England every day.
Please try to come over.
Please try to bring your family
Please stay here for free.
Please try to have have a good time in England .
Please see all the sights.
If you can’t come. Then please try to contact another family who are welcome to stay for free with me.
Please pass on my e mail. would be lovely to have a family, and charge them absolutely nothing !!!!
Thank you for your strong, clear voice on behalf of everyone who is suffering, on behalf of everyone who wants to live fully despite tremendous challenges, on behalf of everyone who wants to express what is true and compassionate and straight from the deepest part of their hearts. It must take enormous mental, emotional and physical effort on your part. You are a gift to everyone who reads what you write. You are a gift to everyone who sees that you do write. Every step you take requires so very much, and this is such a gift to your children.
Thank you.
Lisa,
I have learned much from your blog. Your humour, courage and amazing insight on how to talk to your children about difficult things have helped me to be a better person and mom. I underwent a very similar radioembolyzation procedure for fibroids. It was not a difficult procedure (I was well sedated) and it seems to have worked. I will say that the recovery was more difficult than I anticipated (I was in bed for about 4 days) but I suspect you have endured far worse. I will send my best wishes your way that you can get the procedure scheduled and that you will have terrific results so that you can devote your time and energy to your beautiful children. Take care.
Sarah
Lisa,
My grandfather had liver issues. Back in those days, a liver transplant was not possible, in his cancerous situation. Is it today? I am not necessarily asking for you, because you seem to be way ahead of the knowledge curve. If he were alive today, are the advancements there to treat liver cancer via a transplant? Thank you.