Life does not end with a stage IV diagnosis (really!)
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oh Lily I just want to reach through this phone I’m typing on and give you a giant hug and hang out with you and hear about how your chemo went. That’s just simply not cool that no one has reached out to you from your family. I would be pissed and sad!!
I think that one of the myths (as someone wrote about in the myths and misconceptions thread) that exists is that chemo is no big deal anymore. Maybe it is easier to manage for some than others, but I haven’t had it “yet” and honestly I’m scared as heck to have it. Thank goodness for everyone who has shared their experiences on these boards - they are the ones that make me feel like if the time comes to do it, that I will be okay.
How did it go for you? I hope you’re not feeling too terribly?
Hugs,
Philly0 -
Lily, I have been thinking about you since you recently posted on the Taxol thread. I wasn’t sure when you would have your first infusion. Join us back on that thread when you have time so we can hear about your experience and answer any questions or new concerns you have. I am sorry that your family hasn’t yet shown you the support you need and deserve. Sometimes people just don’t realize what they should do. I know it is painful for you to go through this experience so soon after the loss of your husband and that his loss is magnified even more. I am sending you virtual hugs.
Hugs and prayers from, Lynne
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lily,
I am so sorry that you are going through this and my condolences on the loss of your husband. I hope you find some peace and purpose soon. I know that for the majority of stage IV patients, life can be very challenging. When we do find hope and “normalcy” I would love for folks to post on this thread so it can remind usthat there is hope and more of us are living longer and better than we expected. Still not enough of us, but I hope the positive nature of this thread can inspire others. Take care.
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Thank you all for reaching out....I had the first infusion last Tuesday, am having a PICC line put in then have the second one this week.......I find it miserable being ill on my own and get scared I am leaning on friends too much......although when I am struggling I tend to just go quiet.....I am ok with pain, I have learnt to blot that out, but nausea is a whole different ball game as is swollen feet and feeling bleurghhhh....I cannot drive or go anywhere independently, cannot walk my dog, am effectively trapped at home, needing carers to help take the harness off, get food shopping for me etc....
I just feel like I am looking at a huge empty expanse ahead even though I try and live in the now, no one can tell me how well I will be, I was told I would never drive again but I am determined to, though with a harness its not easy....and its too painful even being a passenger right now, I just cannot do any of the things I enjoy doing....I try and walk for at least 30 minutes a day as I don´t want to lose muscle mass, sometimes I can do 90 minutes (not all in one go)
I do find it encouraging that many of you are leading almost normal lives......I NEED hope!
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Lily- Saying a prayer for you right now. I too live alone. I am doing ok for now. It is the future that scares me--when I may not be able to handle it alone. If you know God, lean on Him.
I love your cat pic. I am a cat person too. My cat is my best friend, seriously.
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Lily - I am concerned for you and the nausea you are experiencing. There are medications that should help with that. One group of people that you should lean on heavily to help with the side effects of the chemo is your oncology team. You shouldn't be uncomfortable in the realm of nausea with all the meds that are out there to help with this.
It sucks to feel needy. I am scared to death as well of if/when I get to the point that I am completely in need of support 100%. I am lucky right now to be quite independent still.
Sending you a giant hug. And LOTS OF HOPE!! You will get through this!!!!!!!!
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Andi, thank you for giving me some hope as the back brace and new fractures etc are hard to get past as they are so limiting in what I can do....so glad to see you got through.........I am Herceptin Negative so hope it will be an easier and shorter rollercoaster ride for me than you.......great to hear you are out living life x
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Hi Lily, I'm so sorry that you are having to go through chemo and deal with all of this so soon after the loss of your husband. You should definitely lean on your medical team to get the nausea under control. There are many things that help.
I too have had bone mets, liver mets and lung mets. They all shrunk a lot after 15 weeks of Taxol (I did weekly which is much easier to tolerate than the bigger dose every three weeks.) I'm now three years stable on just Herceptin, Perjeta and Letrazole with xgeva shots quarterly. I live a pretty normal life now and I hope you will find yourself in the same place soon.
Sending you a big HUG.
DeAnn
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Thank you DeAnn.......I am allergic / intolerant to a lot of anti nausea meds so their options are limited....... I feel ok about weekly chemo, there just doe2s not seem to be many people who need the harness too and that is very restricting......but i need it as even ten minutes with it off gives me a lot more pain........
I am hoping that whatever they saw that they described as "doubtful" on my liver is nothing sinister, had an MRI done and should get the results in about 10 days time.......
Love hearing the words "normal life" or near normal life........just some fun and independence will do me and being able to walk my dog.......I do make myself walk every day......without the walker to keep muscle tone in my legs.........
Do bone mets ever disappear entirely? Or are they always there as little "scars2 but inactive?
Hugs back and thank you for all being so kind xx
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Lily, my bone met, though necrotic, still shows up on PET scans, but is not active,
Back to the almost normal life... This week is spring break so no work for me! Lots of spring cleaning and other neglected chores to catch up on. Plenty of knitting and hanging out with my grandchildren too. Best of all? Sleeping past 5:30 am and have a leisurely breakfast.
Here’s my youngest grandchild digging into her first birthday cake 🎂
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Hi, Lily! I recognize your name from several years past, so wanted to reach out to you now. Although I don't post on BCO as much as I did at one time, I do try to read, and am glad I saw your post, although not happy to see that you've both lost your husband and had a metastatic recurrence within a very short time period. I'm so sorry. But I wanted to share a couple of thoughts with you. First, I honestly believe it takes a good 6 mos to a year to get beyond the shock and pain of bone mets when we are initial dx'd, and losing your husband certainly adds to the grief you are experiencing. But I just wanted to encourage you not to lose faith, because at some point -- when the meds really kick in and you aren't in pain -- you will realize you are living with bone mets, not dying from it anytime soon. But getting control of any pain is really important, which is may take more than two months of being on your first line med to happen.
I'll have to go back and reread your earlier posts, but it sounds you have one or more fractures that are complicating things at the moment. Again, I just want to encourage you not to be discouraged. When I was first dx'd, I was in a lot of pain, limping around, first using a cane and eventually a walker. At the time, I was waiting on an MRI to figure out why I was in so much pain. Long story short, two days before that MRI, I ended up in such excruciating pain that I had to go to the ER, where I learned I had both a fractured femur and fractured pelvis. Boy, talk about being down in the dumps when you learn you need a rod in your femur and a hip replacement. But thankfully, it all worked out beautifully, and after approx. 3 mos. of recuperation and P/T, the repairs totally resolved my pain and mobility issues, and gave me my freedom back. So -- and again I need to go back and see exactly what you are dealing with -- have faith that whatever is going on can be healed with the right tx and time.
One more thing I wanted to suggest to you. I don't see a bone building med listed in your tx as yet. I was very reluctant to start one, but I honestly believe that Xgeva has been one of the greatest helps in stabilizing my diffuse and extensive bone mets.
And lastly, the lack of support you mentioned made me think of an article I just read a couple of days ago that so resonated with me, and I hope it will with you, and maybe even be something you can share with those who don't quite understand how much you would welcome their support right now.
Sorry for such a long post!
Hugs, and hang in there! And don't read any on-line survival stats! Thanks to some newer meds, they've truly outdated. Hugs, Deanna
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Thank you Deanna, jeez you had it tough too...............I have a LOT of metastases, its like a join the dots book when you look at the scan......literally all over my back, vertebra and rib cage......I can feel what is going on so do have some reference points......I know the radiotherapy did help as I felt the difference and I think even the first chemo had some impact.....I am working on treating chemo as a friend to help me get my mobility and independence back.......i am really trying everything I can.....
I have sent that article on to people who seem to have gone back to focusing on their lives and forgotten about me, but I did it nicely!!
Delighted to see you are doing well again, I find it so helpful to read posts where people are LIVING and not just existing......
xx
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dib823- Thank you for sharing that article. I copied the link and shared it on my Facebook page for my FB friends to read. So many truths in that article.
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I am determined to a get a part of my life back..even if it is a small piece. I started interval running, which is really 4 minutes of a very slow jog followed by a 2 minute walk., then repeat. I stop after one hour.
Hard? Yes. Out of breath? Lordy, yes. Knees talking? Yup. But my MO okayed this and I am going for it!
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Dlb and Lily, Not at all easy for either of you. Dlb - some counselling may help you through this bit too? I poo pooed this but eventually gave it a try and have reallyfelt the benefit....including complementary therapies which we have available free from various places. Well worth a shot if only to try and relax and get the head in a place where you are not so stressed that you can't function.
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Hi all. Just checking in with my recent news that I've lost my job as of this Tuesday. Shocked and completely unexpected, but it's age discrimination, I'm 60, disguised as "new initiatives" and we're going in a different direction, so we need to eliminate your marketing job. Really? They don't plan to market anymore? Well, only with digital media, and (not said, but implied) I'm just too old to "get" the digital world. I've been there 12.5 yrs., but oh well, now that I know who they truly are, I'm ready to leave. I lose great benefits and travel, but now I'll have some time to myself to spring clean, sleep in or whatever I want to do! Look at the positives, right? Now if it would just stop snowing and warm temps melt what's already surrounding us! Coming up, afternoon tea at the historic Brown Palace Hotel in Denver with my 86-year-old mother and then a family trip to Utah in May. Hugs and happy weekend to all.
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Bliss58
I am very sorry. It does not seem fair or right.
I would sue them.
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Hi Bliss! So sorry to hear you lost your job. Coming from someone in HR, that does sound like age discrimination...…. I hope you got a good severance package. Also glad you are looking on the bright side. You will have time for spring cleaning and you are right, if it would stop snowing here in Denver you could get out and enjoy the beautiful spring flowers and trees. I appreciate the moisture but DONE with the snow. I am considering leaving my job... not sure it's the right fit.... and can't decide if I want to look for another one or take some time off. I have so many little "bucket list" items that I need to cross off... anyway, enjoy the time!
Hi to everyone else!
XO
Andi
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Hello. I am new to this group Stage IV, but was active during a few years of my first breast cancer. I was off for a while, and now back with a new story. Now I have to figure out where to make the adjustments on that page where you post your diagnosis and treatment. I had breast cancer in 2012 with double mastectomy, no recon. Some problems with medications, especially anastrazole, which finally (mostly) abated in 2018 which was my best year ever in such a long time. Really felt like myself again.
In 2019 February I started having some digestive issues and after several weeks doctor ordered blood and urine tests. One thing led to another and there were ultra sounds, scans, etc. referrals to specialists, all looking at my pancreas and gall bladder; looking for pancreatic cancer. I was having 2 or 3 medical appointments every week since Feb 22 and it was all very stressful and tiring. During the course of their looking at my pancreas and gallbladder some of the tests showed lesions on bones so they tested for that and found Stage 4 breast cancer, identical to my earlier one. ER positive. And in the middle of it all I started having big headaches which turned out to be from High Blood Pressure, which I had never before had in my life. Now , have to adjust to this new medication, in case there is not enough going on already.
We found an oncology team that we liked (different from my first one) and shifted our care to them for the bone mets, but were still dealing with wondering if there was pancreatic cancer or not. Could have turned out to be a complicated situation having to treat both. Finally, on Friday I got the call from the most recent sample that the biopsy showed negative for pancreatic cancer and positive for breast cancer - - the exact same cancer as the other. So, thankfully, we have ONLY ONE KIND OF CANCER to deal with. This will make treatment so much easier. I can renew my magazine subscriptions and still buy a green banana from time to time. Only people of our association can appreciate the humour in that. and my happiness when I say that I have only one kind of cancer. During the course of exams and procedures, they installed stents into my pancreatic duct and my biliary duct on March 7th. Those were supposed to be temporary. I had scopes done on Monday April 29 again and they removed the pancreatic stent, took more biopsies., . The tumor is not in or on the pancreas, but next to it and has caused the duodenum to get narrower so much that the scope would not fit through and therefore they could not remove the biliary stent, which they wanted to replace with a metal one. We shall see what they come up with because, obviously, if we wait too long that duodenum will probably become closed and that will be dangerous. My onco doc and GI doc will be consulting on this and probably let me know this next week. And this is my story.
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oncowarrior,
I’m so sorry to hear of your recurrence. I wish you the best as you go through treatment and hope you’ll come back and tell us some of the “normal” life events, i.e. not cancer related. I have lived with stage IV for over 7 years. I realize that not everyone follows the same path, but there is a surprising amount of living going on, even amongst us stage IV folks. All the best!
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Hi. I get the "green banana" joke. When Netflix releases the entire season of a favorite show, I binge watch because I don't want to be on my death bed and not know the ending.
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Sandibeach that is a good one! 😂
One show I loved loved loved on Netflix is called Offspring. I can’t recommend it more highly. Just get through the first few episodes and it REALLY takes off!!
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oh my oncowarrior....you’ve been through the mill.... and will probably join us in havingseveral more mills to negotiate. It amazes me how varied our stories are, but the common theme is we are still standing. I like your by line... replaced perky breast with a perky attitude!
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OncoWarrior - that is quite a story... so sorry you are here, but so glad you only have one kind of cancer to deal with. One is more than enough. No wonder you have high blood pressure! Hopefully whatever they treat you with will put you right back on your feet like you were in 2018!
Philly - thanks for the Netflix recommendation. I am always looking for a good show or a good book to completely lose myself in!
And Sandibeach - that is hilarious. (well, you know.... ) I'm trying to think of something similar that I do. Maybe garden planting. We plant tons of perrenials and blooming bushes and my husband is always talking about "how full and big they will be next year".... or how the bright red stain he just put on the fence will "fade in the next few years"... he choses to be SO oblivious. I'm always like "let's buy the BIG bush NOW"....I'm all about immediate gratification.
Hello to everyone else!
XO
Andi
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Hello. I am 41 soon to be 42 on Mother's day and now have a confirmed diagnosis of stage IV metastatic breast ca to multiple lumps nodes, lungs and bones. What a birthday and Mother's day gift. This is still very surreal for me. Pending insurance approval the plan is to start chemotherapy hopefully next week. Since I first noticed my mass, it seems to me that my left breast has gotten larger. I am still menstruating and I only feel pain during this time. At times i feel like why me? What did I do? I am very nervous about starting treatment especially being told that I am incurable but treatable and will have to be on treatment for the rest of my life, however long that will be. Anyway I have been reading the comments in this community and it has been helping me to face this new reality that will be with me forever. I hope that eventually I will be in a better state of mind.
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Hi Steph,
Sorry that you're joining us, but I hope this thread will give you hope and inspiration for living as well as you can, however long that may be ( I am hopeful but pragmatic). This part, the beginning is tough . There are many appointments, exams, tests etc., all the while learning to navigate the alien world of breast cancer. My best advice is a) As you are learning, be sure you're getting info from credible sources. There is a great deal of dated and sometimes dangerous, unproven info on line. b) This is a tough one; try not to get ahead of yourself. Yes, you do have to make plans and deal with your life but stay away from too many “what if's..." or worst case scenarios.
I have been NED for over 7 years. It hasn't been perfect, but I am lucky that I've had a relatively easy time (relative to folks w/o stage IV bc 🤷🏼♀️.). I have no idea why I've done so well, but I try to eat reasonably well most of the time, but never deny myself! Compulsions are not my thing. BTW, I'm about 20 years older than you, grandmother of 3, and I teach first grade. But mostly what I am is hopeful. Hopeful that each year we get closer to what I prefer to be a cure, but I'll take chronic for the moment
Deal with the ups and downs you may feel, don't hide them and keep living until you can't. Take care.
**YOU HAVE DONE NOTHING TO CAUSE YOUR BC! Your greatest risk factor is being a woman.*
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Steph, I echo Exbrnxgrl! Although I’m only a year down the line I am now MUCH calmer. This is due to multiple reasons, this site being one. Also your Medical team, your LISTENING Friends/ family ( which is likely not to be everyone). And your spirit.....as much as you can to help yourself whatever that may be... work, family, outdoors, relaxation techniques, holidays/ travelling, research...the list goes on. We are all unique and we respect each other’s ways. But we do agree... the more stressed you are, the harder this is on yourself and those around you. I just cannot live with the THING in my face all the time - I’d break! So put one foot in front of the other in your own time. K
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Good to read all your comments. I am in a bit of a "monsoon season" just now - - crying some every day. And kind of lost, as we are not settled in on things. All I know for sure is that there is an infusion on Monday. Been playing phone tag with doc since Friday. Still no info on the PET scan. Did I light up their Christmas tree??
Karenfizedbo15, where in Scotland, lassie?
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Onco-doc called today. She has conferred with pancreatic and GI docs and their main concern is the tumor more than the bones just now. They want to use chemo to shrink the tumor and so there will be my port installed on Friday. Monday we meet to discuss chemo options, also to make appointment with GI doc put in a duodenal stent, and get a palliative care referral, and have first zometa infusion.
It's gonna be a helluva summer, my friends!
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I like this.
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