When it is no longer just fatigue and drug side effects
For over seven years I carried on, living with cancer but looking fairly normal to outsiders. There was always fatigue and the side effect du jour, but I lived my life. Then the cancer took a very nasty turn. Suddenly it went to the peritoneum, clogging up my system and through that snatching away without warning most of my normal stage iv life. I have a G-tube to drain the stomach, and a nephrostomy bag. My stomach is bloated, my mouth is dry. I am emaciated and weak. When I look in the mirror I am horrified at how skin and bones I am. All my nutrition is delivered through a PICC line for about 18 hours per day. I am living in limbo, waiting to see if Enhertu will beat back the cancer.
So even on the stage iv forum my situation is different. And lonely. I cannot eat food, take a real shower, wear my regular clothes, go for a walk, work in my garden, maintain my home. All I have right now are visits with family or friends, sitting in the garden, watching shows or reading, and consuming tea, juice, and popsicles (which just go out the tube).
Will my new treatment give me back anything? Will I get another year or so? I struggle to find the motivation to get up in the morning. But for my loved ones I am giving the new drug a try. But this is no way to live.
Can anyone relate?
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oh Shetlandpony, I am so sad to read what you are going through. I'm still in the early phase of stage iv so I don't know how you feel but only can imagine.. All I can do is send you virtual ((hugs))
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HI SP, So Sorry that all the gains over the last 7 years have culminated in your recent struggles. I see you as a realistic vision of my future self now that my MBC is in the peritoneum- Harder obstacles in my path, more to overcome, unwelcome surprises. Will I be ready to accept what comes my way? What's reasonable? I await more info on my current meds effectiveness, hopeful but not yet knowing where it will end. I don't know if I would be as motivated as you or have the same courage and strength to endure what is- may Enhurtu be a turning point in the right direction. Nina
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SheltandPony, I’m so sorry to hear what you’re going through! My heart goes out to you. I so wish there was something I could say or do to help you feel better. I have no words of wisdom, but we are here for you. ((((Many hugs)))
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Shetland pony,
No answer for your question on fatigue, but please know I am thinking about you . Wishing you comfort.
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ShetlandPony, I wrote you privately a few days ago to ask how you’re doing. I’m so sorry you’re here feeling this way. My heart breaks for you. I am not where you are at this point. I so hope Enhurtu can give you more time and make you feel better. I am sending hugs, and please know you’ve been on my mind.
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SP, I am also profoundly sad to read your update.. Your situation reminds me of a former colleague who developed ovarian cancer some years back after she and her husband and young son had moved home to Berlin. I visited her twice, the first time it had just recurred, and the second time she had just undergone tumor de-bulking surgery as the cancer had grown everywhere and was blocking her ability to eat, etc. Although she was always thin she was gaunt when I saw her, yet it was remarkable how much just getting rid of the cancer helped, she had so much energy I would not have guessed how sick she was just to look at her. We spent a wonderful 8 hr day hunting around in the forests surrounding Berlin picking porcini mushrooms, which she cooked up with pasta and capers that night, and she then had to hook up to her home IV unit to get the rest of the nutrients she needed for the day. Her dog also had cancer and had just had difficulty drinking water that evening, so they called the vet and after he left, she came upstairs and said "Yet another of cancer's many indignities, now I have to share the IV with the dog!!" At that time PARPi had just had success in their earliest trials, but she couldn't get access in Germany, and she died two years later..
Just last fall Enhertu had "as-good-as-it-can-ever-be" results in the latest clinical trials, and completely blew away whatever was normal second line for Her2-positive MBC, with the docs calling it astounding and transformative, so there is every reason to hope for big results and that allow you to feel so much better!!! I was reading that the ability of Her2-mutant cancers to resist therapy can be due to activation of Her3 and other growth pathways and two reports recommend including Piqray in that case, because PI3KCA activity can be high, and/or they are also testing Her3-ADCs. Mostly, all of us are hoping that you get a big response right away, and get some space to heal and enjoy life....
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ShetlandPony, I am sorry to hear about these latest developments. I had hoped you were improving even though you weren’t posting. I cannot imagine how you must feel. It is so hard to cope when you feel so weak and tired. I am sure you feel discouraged and, yes, scared. I am glad you have friends and loved ones with you. I think I read on another thread that you do not need pain medication, so that is good. It seems that cancer has suddenly taken over your life, but I hope that Enhertu will beat it into submission without causing any SEs for you. How often do you receive Enhertu?
It sounds like you are bored with the routine you have been forced into. Although you aren’t able to do what you really want, it is important to save and build up your strength. It will pay off in the long run. Months from now you could be out working in your garden and taking walks.
I wish there was something I could say to help, but there are no words. All I can do is send you some gentle virtual hugs and remind you that there are many people here who care about you and are sending you their support.
Thank you for taking the time to give us an update. You have always provided caring support to so many here, and now it is time for us to reciprocate in any way we can.
Hugs and prayers from, Lynn
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Dear Shetland,
This disease is so cruel. It takes and takes and takes. And, while I can't relate to your actual situation at this moment, I can in my imagination and heart.
Remember that you have an innate ability to find beauty and joy in life, wherever and whenever. I hope this gift strengthens and comforts you.
Tina
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ShetlandPony- I am so sorry to hear of your current status. I have no words of wisdom or advice - only hope that the enhertu will work and virtual hugs. You're not alone. We're with you in spirit.
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Shetland - I’m so sorry to hear about what you’re experiencing at the moment. I’m sure it is lonely and can be disheartening. You have shared so much helpful information with us over the years, and I’m hopeful that Enhertu will improve your situation greatly—giving you the ability to eat and increasing your strength. I, too, hope that you will feel well enough to be back in the garden in the coming months. Sending a big hug.
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ShetlandPony - I'm sorry and sad to read everything you are going through. You are in my thoughts.
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Shetland, I had no idea what you were going through and hate this for you but like others have said, Enhertu sounds very promising. From what I’ve read, it easily jumped to 2nd line but may even challenge Herceptin itself. I hope you’re able to start it soon and that this treatment knocks cancer back. It looks like you’ve responded really well along the way and I’m hopeful you can do it again.
I wish you all the luck there is
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SP, Thank you for sharing and I join with the others in sending love and strength to you. My heart breaks but I am also so hopeful that the new medications will help. Keep in touch and know we are ALL here for you. Cancer SUX
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Shetland. I was so saddened by your post. MBC takes us away in little pieces. I remember your posts when I first joined BCO. You were dancing. This is heart-breaking. I hope Enhertu gets you unplugged and back to living a life you deserve.
My cyber shoulders are here for you to lean on.
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Shetland - I hope Enhertu does miracles for you! You are in my thoughts prayers.
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Shetland Pony, I’m not one who can relate right now to what you’re going through, but you describe a difficult life. I think all of us would question how much we want to and can endure. I sure hope that the Enhertu works well and that things improve for you. (I was recently reading up on Faslodex and really appreciate all your posts there, especially about injection issues.). I wish I could be more helpful to you. Sending you warm and hopefulthoughts.
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Sending you Hugs and positive thoughts.
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Shetland Pony, I am so sorry for all you’re going through. We are here for you. I hear and have read very recently that Enhertu is a very good drug. I sincerely hope it does wonders for you. Sending hugs your way.
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SP, I hate to hear this news from you. I hope the Enhertu lives up to what the oncology community is saying about it and it improves things for you quickly.
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SP ((hugs))
I'm caught off guard by reading your current circumstances and I'm truly sorry to see it. You have touched many of us here as you can see and feel ( I hope) by the supportive posts. Wishing the best and that this new treatment gets things more manageable.
❤🌷
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Wow, all these posts full of support have reminded me I really do have a community here that cares. I really appreciate all your responses and feel less alone.
I had my first Enhertu infusion two weeks ago. We follow three tumor markers and the most relevant one recently has been the GI one, CA 19.9. While the other ones did not drop, CA 19.9 did go down about 50 points, so we are cautiously optimistic. If the next couple measurements show a trend down, that will be really good. The infusions are every three weeks. I don't know how much I can expect to get back if it works. I would pay $1000 to be able to eat a toasted bagel with cream cheese. Truly.
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ShetlandPony,
Until you can get that toasted bagel and get back to working in your garden, may these flowers bring you a small amount of joy. So happy to hear the CA19.9 went down. I hope you will be able to place your order for the cream cheese very soon!
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SP, so glad the tumor markers are trending in the right direction. May that trend continue!!
I hate that this is happening to you. Sending much hope for healing
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SP, I can definitely relate in a few ways. If you have been following along my story, I had spent 5 weeks hospitalized and nearly died. When I got home I was weak from being bed ridden. I had (Still have) ascites that made me look 40 weeks pregnant with twins. When I saw myself in the mirror I was horrified. The rest of my body was skinny and I had this very large belly. Luckily I was granted an indwelling drain so I can drain when I want at home. Waiting for the hospital paracentesis once a week was too hard and made me miserable. I usually aim to drain every other day because I am tiny and the stretching of my belly is uncomfy and makes it difficult to eat. Luckily I can still eat. Though there are days the swelling makes me lose my appetite.
Prior to this set back , I had been working out 4-5 times a week, going on walks, and I can no longer do that. Not only bc of the belly, but bc of the portal hypertension. It's too dangerous to have my BP go up too much. I'm tired a lot a lot . Yesterday I was in such a funk. I'm 34, and my body and life had changed so so fast. The first 3 years of my mbc journey was not all that difficult and I was still my self just with less hair. Now ... it's just depressing. So I get it. This disease takes and takes and takes . Sometimes it's hard to believe we might ever feel like ourselves again, but I'm hoping the Enhertu is just the ticket to turn things around for you. Nothing is hopeless just yet, even if it feels that way.
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ShetlandPony, my heart goes out to you. I can relate somewhat to your GI issues. I had a gastric ulcer that decided to perch on the opening from the stomach to the small intestine, so food built up in the stomach and not much got through. Although the ulcer is healed now and I've had repeated dilations, it's still very uncomfortable and I can't eat normally. At night I look 9 months pregnant with twins, and I'm down to 88 lbs. On top of this, my husband has Parkinson's and I'm his sole caregiver. We have no family. I'm tired and hungry all the time, and go from 8AM until 9PM helping my husband, doing the finances, updating our end-of-life documents, walking to and from the grocery store, doing laundry, etc. And trying to keep up with my advocacy work.
I join you in the feeling of not wanting to get out of bed in the morning. I haven't had any luck regarding palliative care, but perhaps if you ask your medical team, you'll be helped in terms of quality of life while you're on your treatment. Sending you the gentlest of hugs.
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Bestbird - I'm so sorry what you are going through. You and your husband are in my thoughts and I'm sending you gentle hugs!
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ShetlandPony I wish I could hug you in person. Instead, all I can do is send you virtual hugs and prayers that Enhurtu will help.
So many names that I cherish are in this thread,and I’m glad they brought you some comfort. Women of courage every one!
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Shetland Pony, I am so sorry to hear about this but have hope that Enhertu will work as your tumor markers are going down. Sending you love and energy for continued healing and strength.
Bestbird, I am also sorry to hear about your situation, with you husband with parkinson's. Sending you love and healing energy as well.
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Serendipity and aprilgirl, thank you for your kind words.
Joining everyone on this thread in sending ShetlandPony wishes of comfort and peace of mind.
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I'm not stage IV - but I'm taking the chance to post that so many of us follow along & appreciate you Shetland Pony AND Best Bird., You both have lousy hands, but you are both never far from my thoughts EVERY DAY.
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