I am a little frustrated about my current treatment - especially because it seems that none of you are or have been on this IV chemo alone (Carboplatin) like I am.....there is a lot of feedback on side effects etc on the ovarian cancer site and lots of feedback with it being used with other drugs but not alone. I just started round 2 of 3 weeks on 1 week off. Doc said the genetic profile with my ATM mutation suggested this treatment.
So, in my worst moments I feel like a test subject. And, if I am allowed to whine, this also the first drug I've taken where I just want to lay around in my PJs all day and/or vomit...that's not why I sold my business and retired. I'm not on Facebook or other social media and I am tired of googling this medicine and I'm just having a bad day I guess because this does not seem worth it.
My CA15 went through the roof and my right side (my liver?) hurts so I need to stop googling that too I suppose. This is truly the first time in almost 4 years that I feel sick and I've gotta say that it stinks. I know I need to be patient and everyone struggles so thanks for "listening".
Allison
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Iwasborntodothis
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you poor lady! I am on a trial drug that is failing and the side effects are just plain cruel. The damage has been done now and I am also not a happy Chappy (I am female)! Please know that I am thinking of you! 🌸
So sorry you are going through this. Do you have confidence in your doctor? Maybe you could get a second opinion which might help your outlook. Can’t they give you something for the nausea? I’m in PJs all day every day unless I go out. It’s just comfy for me. Hope you get some relief soon!
I have zofran which helps but also causes constipation which I have been managing with Calm Brand magnesium supplement.
I am going to power through this round but them I am going to ask more hard questions. I also understand fully, that as I burn through options (I have had Ibrance, Fulvestrant, Xeloda, and Capcetibine) things will be more difficult. Its just been a shock I guess.
perhaps ask about Pantoprazole for the nausea as well. Hard questions are a MUST. We must be our own advocates. I’ve also read that sometimes they prescribe a drug that you have already taken because after other treatments it may shock the cancer because it doesn’t recognize it right away. Something like that anyway. Best wishes to you!
Are you allowed to whine? Yes you are! As for feeling like a test subject- that’s a good way of describing our treatment schedules. Literally unless we try it we won’t know if it will work or not or which of the inevitable side effects we will experience. It's not easy by any means.
Dr Google can be a problem when you’re experiencing new pain but it can be very helpful once a real doctor has given you a proper diagnosis so I’d hold off looking at answers found by Dr Google. He’s not really a doctor. At best he’s an assistant researcher.
I’ve waiting on a follow up scan as my last scan showed up something that shouldn’t have been where it was. I told myself that I was going to wait on the second scan and of course, that lasted a few hours and I had to ask Dr Google for advice. Without knowing what the problem is Dr Google just alarmed me. That was enough to stop me looking at anything else but in the meantime, I have had to up my painkillers and every twinge raises my blood pressure. I have had to remind myself (repeatedly) that until I know what I’m worrying about then there’s no point in worrying. There’s plenty of time for worrying about potential problems and treatments when the second scan confirms that there is a problem.
It’s not always easy to take our minds off the dreadful things we are experiencing but while it’s not easy, it makes our lives better. Vomiting and fatigue doesn’t sound like fun but maybe you can get extra medication for those symptoms.
If you aren’t happy about the treatment plan then you should definitely question the benefits with your doctor. Or get a second opinion. Mutation targeted treatments are the holy grail (currently) but if your life is miserable then only the reassurance that the drug is working could help you feel better. And that can only be achieved by scans.
I hope that you don’t have to go through this for too long and that it’s effective for you!
Thank you so much for your thoughtful response, I am so grateful for all of you caring ladies and I guess I don't depend on your support enough. I simply just trudge on. I will go back to my lenten practice of staying off the internet because it surely does not help.
Hello Born2dothis, I am SO sorry you are dealing with these issues.
I am probably going to be on a cocktail of drugs for both my MBC and MCC coming up real soon. Not even sure what lies ahead right now. I can say that I definitely relate to feeling yucky and nonstop Googling.
I agree with the others that maybe it's best to give that a rest. It can lead the mind to wander down dead end roads. It can lead to more worries than you need.
There is also a lot of positivity on the internet too that may help you. A short video of baby lambs or tiny goats jumping around can really lift my spirits. Watching a Seaside beach video is always a nice pretend Vacay-no sunscreen needed.
I have my closest family member my esa dog and he is my constant companion. He makes me feel less alone and he can be such a funny dog too. I try to really love him up and I sing to him and we enjoy our walks; all of that helps me tremendously.
Also to the naseau-- I know I spelled that wrong-are there certain foods that you can switch out of yr diet? With CC I have a limited diet due to constipation and tummy issues. What helps me is eating very tiny meals at a time. Like only a handful of food. That's a meal. I have got it to where I can eat a piece of toast with peanut butter over an hour. Or Mac and Cheese-just a few bites and I am done. light soups too. Half a cup of soup. Tiny amounts-sipping and chewing everything as much as possible.
Lots of Water.
Stress-- can cause the stomache to act up-for me it does. I kind of keep a stress meter for the day and if something or someone is causing too much stress that is not good for my body so I stop doing it. Example: I tried watching 2 Movies. Both were very good but they were causing me way too much excitement. There was a lot of Action and Angst and my empathic feelings were going wild. So I switched it out for a period drama where I could focus on the beautiful set designs, architecture, clothing and it was also a slower pace.
Too many phone calls in the day is also very stressful for me.
Clothing choices: There are many soft and comfortable clothing choices that are not pjs. If you can do some retail therapy and treat yourself to some new comfy wearever clothes. It always helps my mood and can be exciting to get some new things you like.
I too have usually one set of inside "at home" clothes and the other "going out" clothes-I really try hard to pick clothing that is comfy when going out too. If it helps you feel "more dressed" at home you might try putting on some makeup or jewelry to make you feel a little more "dressed". No one is judging you. At least they shouldn't be. You have Cancer for Goodness sakes!
Lastly, I know you know this...sometimes doing nothing leads to a whole lot of positive healing. Meditating. Being present. Just listening to the birds. Music is a big healer for me. Movies are true therapy. Reading good books. I can get away from my current situation and disappear into them. Other things to focus on rather than yr physical symptoms-not to ignore them just maybe a helpful distraction.
Thank you for the lovely reply! This drug is messing with me and with recent labs I can see that its not working so I'm probably done with it and I am grateful. You are all so wonderful.
I found this information about breast cancer and Carboplatin. It answers your question re why carboplatin on its own? It states it can be given on its own or with another drug for metastatic breast cancer. It also mentions the genetic aspect.
Sorry the ĺink isn't working but if you Google Breast Cancer Now then use the sites search engine to look for Carboplatin you'll find it there.
Just one more thing... your consultant didn't answer your question of why Carboplatin on its own. He told you why Carboplatin.
If you really want to pursue this you could ask again.
This drug is really harsh on the body so no wonder you're feeling so ill. Hopefully some of those pains are the cancer cells being killed off.
Thank you so much I will look at this site. The best thing about my doc is that every other month I see his NP who is my age and usually has a more open mind about my concerns. I see her next time and will run my concerns thru her. Again, I want to thank you for taking time to respond I was feeling very down and alone yesterday (I have my hubby but I have put enough stress on that man already)
Hello again, I am so grateful that you posted about yr feelings during chemotherapy. It actually helps me to know that I am not the only one going through this yucky set of feelings and experiences during my Cancer journey.
I actually am about to be on that specific chemo drug quite soon so we can whine together.
I too have Mets BC also Mets CC.
One of the hardest parts about all of this for me is having to take unknown substances with side effects. Just not anyone's idea of fun.
I was going to ask whether yr Dr. was able to help with the constipation?
I just started Linzess and for me it's really working. My pain meds cause constipation and I also have IBS.
I also get that pain on my left side due to my Cancer being all around that area; spleen, kidneys, stomach. You definitely should tell your Doctor about pain on the left side. Maybe they can help?
Also, it really could be the constipation bc your bowels go around yr left side of yr stomach. I try not to sleep on my left side and it helps me.
I really hope you get to feeling better.
Sometimes though, and I too experience this:
There are only levels of feeling better. Because, the reality is, do I feel like I felt before Cancer? Heck No!
Today I did not feel good the whole day.
I felt good for certain periods of time.
For just a little while walking my dog. Watching him enjoy his walk surprisingly makes me feel pretty darn good. He is at least 13-14 years old and I love him tremendously! Every morning after we both wake up, he stays in the bedroom while I get my pot of tea boiling and make our breakfasts. As I am in the kitchen I often witness his very stoic and determined March towards the entryway.
To see my very old yet still determined dog get up and solidly walk to the entry. Like he is on a mission of sorts! It's funny and yet so endearing at the same time. We are both old and both our bodies hurt. And he keeps going and so do I. And that's how we start our day. It may seem silly. Insignificant details about a strangers life. Yet I am sure you and your husband probably have at least some shared morning routine? Whether it's brushing your teeth together or sharing a cup of coffee? Anyway, my mornings are sacred to me and my dog. We cherish them.
Please know that I am thinking of you. Maybe splurging on some new pjs might help? Soft velvety fabrics. Silks and pretty patterns...maybe they could help?
First to answer about constipation...I have good luck with old fashioned Milk of Magnesia but my favorite (and my nurses have mixed reactions but don't say "no") is a product call CALM it is a drink mix or gummies that is really a flavored magnesium supplement. I take it the night after I take my anti-nausea med that stops me up and I get relief in the morning. You have to fiddle with the dose so you don't go too far the other way. I put one spoonful of the cherry flavor in hot water before I brush my teeth and go to bed. It also helps you sleep a bit.
Started Trodelvy yesterday so once I get through week one I will do a post. I try to target my posts to help future "me" because you all have been such a wonderful source for me even if the cancer center folks roll their eyes about the online forums. I get it from their perspective they don't want me running around trying something that undermines their work but I feel like I can parse out what I need without getting involved in the drama.
I did buy some new PJ's and sweats...such a lovely treat!
Again, such a lovely post! Thinking of you and your little dog friend.
You are very Welcome Born2dothis🌺That is interesting and a bit odd the cancer centers attitude regarding online forums. Outside I feel really alone and this place has made me feel a lot less alone.
CALM sounds Wonderful. Wow! I may have to try that too. I agree that we cancer patients should be allowed to get things just right dosage wise because everyone is different. I take Linzess every other day or so precisely because it does mess with me-
Naseau and an overwhelming feeling of just ickiness! So much of Cancer to me is a lot of feeling icky! Food doesn't look or taste right and after a few bites I am done. Can't get excited about much just trying to stay alive is taxing and draining. I am
getting ready for surgery plus next week big exciting things planned..
I get my chemo pump! Just like old times at the poolside in Summertime 🐬🌊🏖
Or Maybe not.
Definitely not complaining about finally getting badly needed treatment and very very grateful for the chance to live...
I have tried to preserve some of the things I have always loved doing like Shopping.
Clothes and Sparkly things 🌟 bring me so much joy and happiness. They have no bad tastes in my mouth.
I am really glad you got some new pjs!
I will give my Comfort FurBear an extra scratch behind his ears just for you 🐶
Happy Wishes for you !💐🐦🙏💪🌺👸💖🌟🤸 sorry, I get a little carried away w/my emojis 😊
Looking forward to your future posts and keeping you in my thoughts and Prayers.
Hi Allison, thinking of you and hoping for the best for you. Also, I think anyone with MBC is allowed to have bad days , I just hope your good days out number the bad ones.
Amen and thank you for that...I am also caring for my father who had to be put in a home for dementia last year, winding down my role in a small business in which I sold my share, and helping my sister's boys (we lost her to this stupid disease in 2017) navigate this world so sometimes I get a little overwhelmed.
Right? some days I just want to lay on the floor and have a toddler tantrum - never imagined that I would be the one caring for my father....its been a year since he "wandered off" at 2 am in his bathrobe with no ID and had a medical emergency in someone's front yard. He was in the ICU as "John Doe" for 12 hours before we found him...had to sell his house (my childhood home) and move him to a home. Now his "girlfriend" has understandably bowed out - my nephews help but they are 20 year old boys and have lives to live.
That is a heavy load for anyone to carry. Take care of yourself. I understand the pain of a family history of cancer. My father died of stomach cancer when he was twenty, five months before I was born. He was sick for six weeks, there was nothing they could do in 1959. I fight this dragon of a disease for me, my family and my father. Every day I am alive I am kicking cancer in the butt!
Allison you whine all you want. This is the place for it, and my heart goes out to you. Carbo is not easy even on a good day.
There is a bunch of palliative things that you can be taking to help the side effects. Please call your Onc and ask them to help you. I don’t know what you’ve tried, but Varubi (sp?) shortly before treatment worked for me. As did a patch for nausea which I can’t remember the name of, but I keep that sucker on as long as I could serveral days after treatment. Both were Rx from the oncologist and helped tremendously.
Oh Allison so sorry you are going through all this. I'll be praying for you. Maybe you can have your onc perscribe Zofran for the nausea. It helped me when I had chemo.
I am on extremely high doses of opioids and I take zofran on a daily basis. to avoid constipation....I proactively take 2 Docusate sodium 100mg stool softeners every evening and Miralax twice per week. it works for me. I hope tomorrow is a better day for you🤞. I experience down days too. I think we all do. it is such a heavy feeling....I feel for you💛
I too was diagnosed de novo in December 2019. I’ve been wanting to speak with someone who’s had MBC ( a stage IV diagnosis de novo ). It it important to me to talk with someone with similar diagnosis. It is not only the cancer but the psychological impact of that diagnosis.
I’ve had various side effects (SE) but learned to deal in small ways . But they are getting harder and harder to handle.
I’ve been on Ibrance, Xgeva and Letrozole. I’ve done pretty well for 4 years ++
The SE of nerve pain has radiated down my arm, and feet…and now my neck. If this gets much worse I will probably stop all meds and enter Hospice.
There is a difference between staying alive and living. If my only choice is to suffer pain, and then have to deal with meds that make your nerves hurt so bad and pain pills, (which only make you lethargic…which is not living), then count me out.
I’ve tried pain doctors who gave me injections which lasted for a few months which was fine but now they don’t seem to work anymore. I have cancer in my spine -lower back, mid back and neck and iliac. My arms and knees hurt and I can only stand for short periods of time then I must sit down. Oh and nausea too.
Once I calmly decide I’m done I’ll enter Hospice…gratefully. I have support and a loving family. I am grateful for the past 4 years ( during which I buried my husband.). Now I have nothing to keep me here.
I’m just so fatigued and hurting and unafraid of death…which happens to us all.
I'm a long timer with MBC (19 years +) and I've had times of feeling like you do! Last Oct, I was hospitalized for 23 days for an intestinal blockage that was caused by cancer cells pushing on part of the small intestine. I was kept in bed almost all the time and lost alot of strength in my legs. Now, I can only eat about half of what I used to eat and my digestive system doesn't work like it used to. The cancer center where I am treated has a palliative care team--alot like hospice except cancer is still being treated! The NP knows alot about managing side effects and is a warm caring person. She spent over an hour with me and my husband at my first appt with her. She prescribed a different pain meds and a drug I'd never heard of to reduce my itchiness! Both meds worked super super well! I wonder if there is s pain med that could help you better. I don't have nerve pain but I have nerves in my arms, hands, legs anbd feet that are damaged from spinal stenosis not cancer related. Yesterday my husband was vomiting and having diarrhea from 1 a,m. until mid morning and he decided to go to the ER. That really scared me -- forced the reality of how much I depend on him every day! One thing that does help me alot is that I still have my sense of humor and find things about how I am doing that I can laugh about! These aging bodies are not what we expected! We often joke about needing to get our bodies transplanted onto a younger body! I've though about what it would be like to get an animal body instead...always makes me chuckle! An ape body seems to make the most sense....arms and legs, but how crazy would that be! A large bird might be fu n and could give me all sorts of new experiences.... I do hope you can find a way to get that pain under control! Living in pain is not what any of us want, that's for sure!
Please know that you can DM me any time - I am not on here much but glad to share the journey. I agree about not wanting to spend the rest of my life like a zombie on meds...my sister had IBC and when it spread to her brain, it was terrible. I don't want to be like that and my husband knows it.
It is interesting to me how many of us start to suffer from these horrible gastrointestinal problems that linger from our treatments. I'm not sure I want to "live" with that either. It is a daily balance and again I am so grateful for all of you.
I was put on palliative treatments from the very beginning of my de novo diagnosis. The clinic makes it clear that while our cancer is treatable it’s not curable and so their goal is to make our lives better not worse. While palliative treatment sounds like the end of the road, it’s still about actively treating us.
The doctors have maintained the line that they can’t predict how long we’ll live but they have patients who are living a long time. I just hoped to get to five years. It wasn’t long enough but I knew several people who didn’t make it that far so when my doctor said I could live years I didn’t think she meant a decade. My mother had Alzheimer’s and we asked a palliative nurse to come from the local hospital so we could arrange mum’s end of life care which we thought would be in a hospital ward like dad. I told her about my condition and said I’d probably be needing her services soon myself. Her immediate reply was that she didn’t expect to see me for another ten or even fifteen years because that’s what they’re seeing now with breast cancer patients. I was only three years in at that point and I wanted to believe her. I told my oncologist what the nurse said and she said I could easily live for a decade. Considering the clinic policy is not to speculate, that was a big deal. When I was in sight of the five year mark I started to look for reasons to hope for another five years. I googled ‘how long can I live with stage four breast cancer?’ Google came up with a post on a support group that had over 1300 answers to that very question. I read them all. That was the first time I read that it was possible to live for more than a decade at stage four and a few mighty warriors have lived 20 years +. Up until then I only knew of Jackie Collins who made it to about 6.5 years and a blogger from the UK Sara El Hassain who also made it to about 6.5 years. Lots of women have beaten breast cancer at the early stages but it was hard to find reason for hope of a long life when you were diagnosed at stage four. Thanks to the power of the internet and the willingness of people like us to share our experiences publicly, there is hope.
Not everyone does make it to five years and when I was first diagnosed the statistics were that 22% would. Now official sites quote numbers between 27 and 32 percent but even so statistics are usually out of date so even 32 percent is probably pessimistic!
I’ve read posts from other people who are embracing the end of their lives. Bestbird posted her transition message recently and another long time survivor has posted about her difficulties with health problems other than breast cancer after 21 years at stage four. These decisions aren’t taken lightly and they aren’t easy. I’m not at that stage yet but I know I will be eventually.
I really respect all of those people who have decided that enough is enough. Participation in life is an element of living. If we can’t participate in life, then it’s only survival. Survival until we can get help or make it to a safe place is important but if we’re looking at that in the rear view mirror and we’ve done all we can or all that we want to, it’s good to know that we can throw ourselves on the mercy of the hospice care teams.
I read an article last week about a young cougar who laid herself in a comfortable bed to die. The bed she chose was outside an animal refuge and she was found barely alive. Skin and bones and organs were what made up her weight. She had no fat stores left. She was found at about ten months of age and it’s believed she was one of the cubs of a female cougar which was killed on the road a few weeks earlier. Cougars don’t learn to hunt until they’re about 18 months old and they stay with their mother until they’re about three so this animal has never learned to hunt. She probably had a sibling but he’s nowhere to be seen. So she’d decided that she’d find a comfortable place to lay down for the last time. Of course she didn’t philosophise about the meaning of life and death but her body could do no more so she laid down and she would have died except that she chose the perfect spot to lay down. The rescue staff found her and brought her some chicken to eat. And although she would not have known that humans could or would help, she accepted the help provided. She ate and ate all she was offered and she put on weight. She can’t be released back to the wild as she still can’t hunt but there’s big cat rescue parks where she will live out her life in a far different way than she expected.
Whatever decision you make and whenever you make it, I think we all know when we’ve had enough. Both my parents had health problems and they preferred death to the life they were eking out. They loved life but not the life they were living. Whilst I hope you get a lot more happy years of quality life, it is not guaranteed that any of us will.
If you have children or family, I’d recommend talking to them about your decision as knowing how mum and dad felt made it a lot easier for my brother and I to make the end of life decisions for them. It was really hard for my mother ‘s elder sister to accept that she didn’t want to eat and drink anymore and she kept on trying to offer her food. I know how my aunt felt as I was looking after my mother and I kept making Sustagen drinks for her and she’d take a sip and that was it. It took a conversation with my sister-in-law to realise that it was time to stop offering her anything. Mum was present during the conversation and she smiled when she heard that we wouldn’t keep on offering her food and drinks.
I’m not suggesting this will be the way it will go for you but I’m saying that if you have a definite plan you need to ensure that your family support it because once you’re unconscious or considered incompetent medically it’s your written instructions that will be followed and if there are none, your family will be consulted.
What a beautiful message. Everything you said is so true. I’ve been admitted to a (pre), hospice program just this week. While I am able to do most tasks I find I have slowed down and so I was fortunate to have them. I know I am losing my stamina but most people think I’m just fine. I want to face my impending death with love and courage. My family has been wonderful. My son lives across the country but will visit in June. I’ve been “getting things ready “ for years. It is having the courage to know when the time is right.
I hope you don’t mind me commenting about knowing when the time is right. If you do mind just let me know and I’ll delete this!
I can share what I observed when mum and dad were nearing the end of their lives. Dad stopped planning forward. I was talking to mum and dad about their 60th wedding anniversary which would have been about two years ahead and dad said ‘I won’t be there’ and I said ‘why won’t you?’ And he said ‘I’ll be gone before then.’ He had diabetes and he’d developed congestive heart failure and that impacted in his kidneys and he started to mess around with his medication. The last six weeks he was continually going in and out if hospital. The hospital would get him back on track and he’d come home and stop taking a different medication and back he’d go to the hospital. I could say a lot more about that time but it’s not his story, it’s yours that’s important. He had no desire to consider the future. He saw no reason to be there and one way or another he made sure he wouldn’t make it up their 60th wedding anniversary.
Mum was very lonely after he died. He wasn’t easy to live with but she’d been doing that for 58+ years and now she missed him - even the things that annoyed her at the time! She had an unusual form of Alzheimer’s so while her memory was bad it still existed but unfortunately she knew what was happening to her. She found it difficult to sleep alone after so many decades so I moved into her room with her. The Alzheimer’s dictated her final two or three months but as she lost the ability to walk and toilet herself etc she told everyone who was in earshot that she’d rather be dead than live like this. She didn’t say that when she was initially widowed because the disease hadn’t overtaken her yet but once it did and her life was no longer enjoyable, she lost her purpose. She’d always been a busy person between cooking, cleaning, laundry and gardening but she felt like she was not doing enough just sitting in a chair with the dogs sitting on her lap. She simply had no choice.
The fact that you can’t make a decision right now indicates to me that you’re not ready to actually go right now. Hospice care isn’t the immediate advent of death although it is if we leave it to the last minute .
When the time is right, you’ll know it. You won’t have any doubts and your son will see it too.
Stay strong! Dying is every bit as hard as living but with death comes peace and no more pain. For us anyway. Those we leave behind feel the pain of loss though.
I hope you enjoy your visit with your son. It’s always nice to have something like that to look forward to.
I meant what I said at the top - if you want this post removed you only have to tell me.
I understand but some people draw back from the idea of discussing death especially their own and I respect that. It’s a hard issue to deal with and I read an angry post on another site after someone posted details of their loved ones process of dying. The person was upset because she felt confronted by the knowledge of what she might expect herself. So in light of that, I choose to give the option when frank discussions are involved. But thank you for being so supportive!
I am honored that you have shared so much and I think you’re right, I’m not ready to die yet. I’m not easily defeated, if I can get relief from these side effects (my right arm goes numb and it’s painful as is my back and at times sciatica), I could deal with the rest. But right now I’m struggling. When my husband died (during the pandemic..but not from Covid), I was the caretaker. I learned the signs of someone beginning the death process. He slept a lot and slowly ate less. But he was not in so much physical pain. I realized that his meds were making him delirious and that’s when he entered hospice. The “pre” hospice program is palliative and a nurse visits each month. I’ll still take my meds but I’ll be able to begin hospice if I need to.
As I write this my arm is trying to go numb and so I must stop for now. I can’t tell you how important your messages have been. Thank you for hearing me.
You have gotten some great advice and encouragement the past few days.
This journey we are on has ups and downs like life itself I guess. I have just had a couple of months to get established on my second chemo treatment - the first one failed less than a year in.
I hope sharing a bit of my story here will give you some encouragement too. I had right side mastectomy and reconstruction April 2014. They thought they got it all and they began prepping for chemo and radiation only to find out in June that same year that I was metastatic - I consider myself de novo since my initial treatment has been for metastatic disease. I was told it was in my spine and liver. I didn't even have a week to prep for surgery to prevent me from becoming a paraplegic only to find out the risks were varying degrees of paralysis and blindness and a list of 10 other risks that I couldn't stand to think about and the best outcome was a 2 year life expectancy prognosis.
I did it - my kids were in middle school and high school at the time I wanted to be there for them as long as possible. Fast forward 9 years this month - I am not blind, I am not paralyzed, I did give up working full time. I saw my 3 boys graduate, all are working, one is still in extended studies for massage therapy, one is married, one is engaged and I am about to be a grandma. Most of which I wasn't sure I would never see!
I currently have no evidence of disease in my liver - but have exhaustive bone mets even beyond my spine.
We just don't know what is in store for any of us.
So I just checked my treatment history...I have exhausted hormone treatments, I have done Tamoxifen, Anastrozole/Letrozole, Exemestane, Capecitabine (Xeloda) then Fulvestrant and Ibrance combo. After Ibrance failed I started IV chemo with AC - Adriamycin and cyclophosphamide, after 10 months I am now on Vinorelbine. I have also had the max of most bone density drugs - at 2 year intervals to prevent jawbone damage.
IV Chemo terrified me and the side effects of AC a.k.a. Red Death/Devil were the worst... I was always sick, weak and fatigued, rapid weight lose and digestive issues galore and liver pain. My oncologist told me she needs to keep me alive long enough to get to some of the amazing drugs that are just starting to break through so push through it and fight like you have never fought before! Somedays are harder than others. But I know she fights for me and with me. She sat on the phone with me 11pm Saturday night when I tested positive for Covid, she got me the anti-viral when no one seemed to have it in stock and one month later was fighting to get me through shingles. It is so hard but I focus on the joys, the little moments.
Sometimes that can seem impossible and the end can seem so close. 7 months in on AC I nearly had a nervous breakdown, I had to take 3 months off, if anyone said the word chemo near me I cried uncontrollably. I was a mess, in those 3 months they hooked me up with a psychologist and dietitian and the I was able to resume.
I have learnt so much along the way and I actually speak about my journey publicly now; it has been very rewarding and therapeutic. I still see the psychologist over the phone once a month to keep me grounded.
One practical piece of advice - for anti nausea - metoclopramide prescription for nausea causes diarrhea (bonus when so much is constipating), boiling ginger root in water drinking morning noon and night helps tremendously with digestion, add a little honey if the taste bothers you.
Another great factoid, Rootbeer does not change its taste with chemo - I had not drank it since i was a kid but I have it in the house at all times now - it's encouraging when something tastes "normal" and Rootbeer floats make me happy!
I also resisted CBD for years - started it this winter. It is helpful and not so constipating as opioids, which I still take but less often. THC and CBD as 1:1 at bedtime can produce a regulating effect on your digestive system and promotes a desire to try and eat if that is a thing with your chemo type. I don't have eating issues now so I don't use THC but have continued with CBD only...for pain and anxiety.
I don't currently feel like I am at deaths door and I now have energy enough to feel alive. When it is darkest we reach for the light. When we can come out of some of the darkness we can appreciate the gift of a little reprieve even more.
I hope and pray you find a reprieve from treatment fatigue and also some of life's fatigue and trial. I hope you find and feel miracles daily, enough to strengthen you and encourage you.
Thank you so much for this detailed post with so much good information. I am sure I will read it again and again.
The liver pain comment struck a nerve - the third night after treatment, my liver pain is excruciating. I can't lay on my side and it feels like my ribs are broken. I use Aleve and lidocaine to sleep through it. By the next day, it starts to back off and the following day, its like it never happened. Is this the med working or not working? It's terrible. I'm going to ask the chemo nurses today.
This is the perfect place to let it all put!! We all feel your pain and frustration. Just not at the same time. Keep the faith and keep up your fight!!
We are all in this together. I’m sorry you have to go through all this!! 🙏🏻🙏🏻🙏🏻💗💗💗
Oy. You will be in my thoughts today. I've benefitted from posts you've made and I wish I had a quick fix for that thrice-cursed nausea of yours.
But I've had trouble with nausea (while on Piqray) and had Zofran stop helping. They switched me to Lorazepam (Ativan) which worked a bit better until I was able to get off the Piqray. Then I had no nausea on Enhertu, but had to be taken off it and now that I'm going to be on Xeloda, I have Olanzapine (Zyprexa) to try if the Zofran fails again. Haven't begun the Xeloda yet, but I'm trying to prepare myself for the likelihood of barfing....sigh.
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