Need Your Tips for Members Newly Diagnosed Stage IV
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I was told in Jan one met pelvis. Then radiation dr said not convinced it’s cancer. So off to a 3rd opinion and he tells me it’s through my whole spine. I’m in total shock. I have to be here for my 5 year old at least til he’s 20. I am happy to see good stories here. Helps a lot. I haven’t even started tx yet for the mets. Chemo and immunotherapy coming up and I hope soon!!! Will be coming to this page a lot
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Thank you so much for your post- I was dx last month as stage 4 and am still reeling. I have started treatment and thats OK so far, but I just am so scared about what to expect next. I totally understand the views of others when they say they wake up and do a quick check- how am I today? Thanks all of you for your positive posts- really helpful. xx
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How on earth do we live life to fullest when the nausea is so bad! Am I missing something? Any advice. I have tried both anti nausea meds that are most prescribed and they do nothing.
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dlittkemann, which nausea meds are you on & which treatment is causing the nausea? I can dig out the list of anti-emetic flow chart meds for you. Way more than 2 options.
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Hi,
moth, I'd be interested in some other anti-nausea meds too. thanks in advance!
dlittkemann, I'm sorry to read that you're suffering. I know they have good meds, and you should get some, too!
I'm still just using Gravol, but feel like I need something stronger soon.
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Hi Moth
I have been on Ondandestron (spelling?) and olanzapine. They referrred me to palliative care (hate that term) for side effect issues. They are trying me on a new one next week. Hoping it works. I can’t lose more weight.
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cute - here is an excellent protocol from my province (this is a pdf) I'm an easy barfer and have always been so worried about nausea/vomiting. I cling to this protocol like a liferaft because I love its explicit goal: NO nausea or vomiting. That's my goal too!
http://www.bccancer.bc.ca/chemotherapy-protocols-s...
key point: easier to prevent than treat!
page 2 lists most of the drugs
page 5 has additional drugs if things on p2 are not working
page 6 has a flow chart
(note: nabilone is synthetic cannabis. Depending on your location, you might be choosing to add cannabis to your mix. MAke sure your drs know so you don't get the synthetic and real doubled up)
dlittkemann - to your ondansetron and olanzapine, if your n/v is still not controlled well, you can ask for steroids and aprepitant.
Or consider trying Akynzeo (Netupitant/palonosetron). Palliative care people do undertand pain & nausea/vomiting really well so they're good people to have on your side!
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moth - thank you!
dlittkemann - I'm sorry to read you've been having a tough time. Sending you positive energy and hope you and your docs will find something that works better for you.
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Started steroid. One a day. No vomiting now. But bloated. Lol. Always something but better anyhow. Appreciate this amazing space to ask for info etc. Thank you all x
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dlittkemann, glad to hear it is better!
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This is what has worked for me after my breast cancer metastasized 7 years ago:
- Find a doctor you trust and do everything they tell you
- This is not a death sentence. This is just a bus you see coming.
- Let your friends and family know that you love them every day.
- Like the old ad “Just say No”. If you aren’t up for an activity, then don’t do it.
- We cancer patients are sometimes very good at looking like we are fine. When you have been fighting cancer for several years, people forget you are ill. Cut them (and yourself) some slack.
- Remember, no one lives forever. There is nothing unfair about breast cancer Mets. It just is what it is.
- And finally, you can do anything as long as it isn’t forever. Live in the moment. My goal is to wake up the next day.
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Hi Moth, so sorry you are having such a time with nausea.
My best anti nausea med is promethazine. I take dissolvable (under the tongue) ondansetron first. Then Promthazine if that doesn’t work0 -
tmackain thank you so much for these great suggestions
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Today is one month since I found out I have MBC. I've just been reading through this thread and really appreciate the kind words and insight you all have shared. Thank you.
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This is a great thread and I have been able to read most of the posts. I appreciate the time you all have put into it. I am in the initial limbo state. I had forgotten how bad the waiting is!! I have gotten the results of the PET scan, had to wait two weeks to see the Oncologist and she is playing her poker hand and doesn't want to call it Mets until the biopsy. PET shows multiple Mets with primary tumor in sacrum and L3,4,5, Spot on liver was listed as possibly metastatic and she wanted a liver biopsy. PET also shows metastatic disease in both femurs, both humerus and sternum. The part I had to research was the fact that it mentioned many spots throughout the marrow indicative of treated metastatic disease. I guess the cells go dormant after treatment until they wake up. I have been referred to interventional radiology and the biopsy is Tuesday at 9 am but IR decided to do bone marrow instead. Do not know why and I guess they will tell me when they call Monday. The spot on the liver is 1.5 cm IDK if it is too small (?) or he worried about the location, (or my plus figure) I am sooooo stressed out about having that done.
That said, I tend to not cry very often (hardly ever) but it comes when there's nothing left. From the get go I have just been PO'd! Short tempered, inpatient with people and aggravated at my husband for smothering me. I know he cares and is scared but I just want space to process this stuff. Inpatient for answers and wanting more answers yesterday!
Lots has happened in the 13 years since my original DX. I have had a heart attack with stent, I have a leaky mitral valve they are monitoring (no use now) I have congestive heart failure, high blood pressure, I am wondering about my sugar as fasting blood sugar prior to the PET was 112. I am having a difficult time with all of this and my daughter is waiting to tell my grandkids until after we know more. The whole family is is a tailspin because husband's father died with bone Mets from Prostate and my mother died from liver Mets from Renal. We have all seen how this rodeo ends.
HOW do you manage the anger????
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Bettysgirl -
Hmmmm - how to manage the anger. That can be a tricky one.
Okay, don't beat me up. I'm not saying that your anger isn't justified. Everyone needs to process MBC in their own way.
It sounds sappy, but my philosophy is to be angry for a little bit .... then let it go. Anger brings so much negativity with it; it doesn't provide any value to you. Think about how your body feels when you are angry. Not a great feeling, is it? Trust me, I have lots I could be angry about. But it won't change anything.
So, my advice ... go to a closet, outside, your bathroom, the woods, wherever you are comfortable to yell, scream, curse. Get it out. Then let it go. Choose Happy. And go about the business of kicking cancer's butt. You can do it!!
Good luck!
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bettysgirl - it's early days yet. Anger is real and valid. I'm still angry 17 months in.
This is from one of my blog post about motivation & getting through the days called "the only easy day was yesterday" and I wrote in it:
"But I will still defend everyone's right to remain angry and bitter right to the end. You don't have to ever let go of those. They can burn in a little corner and flare up whenever you want. It's ok to keep them. & not just keep them – I mean really keep them. I'm tending mine carefully, feeding them little tidbits regularly and letting them out to scream and whine occasionally."
I'm actually really happy most of the time but I'm also still angry about this. This just sucks.
& yeah, we kind of know how this thing ends, but we don't know when. From part 3 of the motivation series "We know how this story ends but there's no need to put it in fast forward."
i write these posts for myself really because I need to tell myself these things over and over (& over!) again. But I hope they help you too!
when you have confirmation, join us on the bone mets thread & liver mets thread. Tons of info about treatment and support.
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bettysgirl: Your name was new here but since you joined in 2008 and I went back to check out your older posts. I came across "Let's Conduct Our Own Study On How We All Got Breast Cancer" I read years worth and laughed a lot. The posts stopped around 2018 (I think) then there was a newer one. It needs to be re-activated. I will go back and put in my theory about my MBC. Thank you for the fun it provided me.
As for how to handle this ---- the early days are the worse days. De Novo for me was a shock but thinking it was all behind you then have it come back must feel like a terrible betrayal. It is okay to be angry. Rage. Rage. But try not to take it out on people who mean well. I didn't yell or cry but I could not stay still. I paced around like a caged bear. I didn't know what to do with myself. I wanted to get on with it. On with treatments. On with whatever may come with it. I shaved my head so as not to be mortified by my hair falling out. I wrote up my "last wishes" --- I honestly thought I might only have weeks to live and wanted loose ends tied up. I threw out journals so no one could read my private thoughts. That was dumb and I regret that. Vibishop has good advice - go somewhere and scream. I should have.
You already have so much on your plate health wise -- it is unfair to be saddled with yet another. Let us know when you get the various confirmations. We are here for you.
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bettsygirl - anger..........I'm still angry, but continue to do the things I enjoy and try not to let the beast ruin my life more than it has. Last winter while x-country skiing I found myself screaming as lymphedema made the affected arm/hand painful and cold. But I went skiing a couple of days later and just did not wear the garments and had warmer gloves. Just spent a week on the Oregon coast, one of my favorite places. Ranting can help, and there is a thread for that, sometimes people respond with encouragement and even tips. https://community.breastcancer.org/forum/102/topics/833446?page=279#idx_8366
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Bettysgirl: go to "Steam Room For Anger" - or try the link . Rant away!
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Here’s a live link to the Steam Room:
https://community.breastcancer.org/forum/102/topics/833446?page=280#idx_8377
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