Life does not end with a stage IV diagnosis (really!)
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hi Pam. I made a mistake, it’s my sacrum where I have all the pain. I get PET scan Thursday and will update everything correctly when I get diagnosis. I had no lymph node involvement either, and thought oh yay! That’s it. Thank you for posting. I am on pins and needles and have such anxiety and fear. I am grateful for you and this community.❤️
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how soon from PET Scan does treatment begin? Does oncologist give you something for pain if you are having it thru treatment. Now he is going to be handling me instead of primary. Also…..Are PET scans claustrophobic as MRI? I love you all already. I was freaking out wondering if I was going to be here in a month. I know I have to get my diagnosis, but last month after my clear Mamo….my oncologist looked at me funny and said …but you are anemic, when he looked at my blood work. . I told him I’d eat more spinach. 3 weeks later this excruciating pain started in lower back and rib and back spasms! Thank you for being here. I guess I am just spinning now. Have a beautiful day.
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@xsuzx You have a lot of questions that need to be answered by an oncologist. I am not claustrophobic. However, I find PET scans to be shorter in duration than MRIs. And, they’re not nearly as noisy. You don’t need to have a headset on or anything like that. So, overall, I feel a PET scan is less irritating, if not less claustrophobic.
Regarding pain: be sure to let your doctors know that you are having pain and the level of severity. They should be able to prescribe something that will help. Once again, I am so sorry that you are going through this.
And regarding anxiety: I asked for a prescription for lorazepam. I do not take it during the day. I don’t like feeling out of it. However, I do take it once or twice a week an hour or two before I go to bed. It helps me sleep through the night, which is very important. Something to think about if you feel it is necessary.Hugs, Pam 💗
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thank you Pam…..I know I have a lot of questions. And I don’t see oncology until 12/10 so I just have to calm down. But it’s hard.Thanks so much🫶
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@xsuzx Perhaps your PCP would be able to give you a prescription for lorazepam. That’s who prescribed it for me. It took me a long time to get in to an oncologist as well. I was majorly stressed, so I feel where you’re coming from.
Seek out all the distractions you can. The beginning is the most difficult, as others have pointed out.
💗🤗🥰More hugs, Pam 🤗
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Palliative care helped me a lot. They increased my antidepressants and prescribed lorazepam. They’re working with me on my sleep issues. Also they referred me for short term therapy to work through my anxiety. I don’t really need it anymore but my therapist said I could return if I needed to. Palliative care is not hospice so don’t be freaked out about the name.
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@xsuzx
I’m sorry for everything you’re going through, and I hope you get answers to all your questions.
As for me, I’m speaking from my personal experience.
I have a severe phobia of closed spaces (claustrophobic) ,so I never undergo MRI scans without anesthesia or sedation.
I’ve had three MRI scans in the past few months, and they were a horrible experience for me, even though they used anesthesia.
However, the PET scan experience is much easier for me.
I wear a mask over my eyes during the scan, close them, and don’t open them until it’s finished (so I can prevent myself from seeing the transition between light and dark areas inside and outside the machine).
which makes me completely comfortable.A full-body PET scan, from head to feet, takes about half an hour, compared to an MRI which can take several hours depending on the area.
I won’t hide from you that I get very anxious before any scan, because I’m also afraid of large machines or devices above my head—they really scare me.
In short, you can consider that I’m speaking as someone who is extremely fearful of scans and enclosed spaces, but I’ve found that I can manage a PET scan much more easily.
I wish you a speedy recovery from your bone pain and stability after all this hardship.❤️
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Thank you, Pam.
I always find the answers I’m looking for with you.
Regarding the medication you’re taking for anxiety,
is it also helpful for insomnia and difficulty sleeping?
Ever since I found out that my doctor is going to change my treatment, I haven’t been able to sleep much.
According to my Fitbit, I barely sleep more than 4 or 5 hours.
And Does this medication cause dependence or addiction?
Thank you
🤗🧡🧡
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@norah2024 So glad you have found a way to get through a PET scan comfortably.
As for your question regarding lorazepam… it helps to relax muscles and anxiety. I take it about 90 minutes before going to bed. I start to feel a bit more relaxed about 30-60 minutes after taking it. It does help to knock those annoying worries out of my head and I usually manage to sleep 6-7 hours. Because I have a lot of tight muscles and they feel like they are ready to cramp, especially at night, the lorazepam also helps to tamp that down.As I stated before, I only take it once or twice a week. As with any medication of that type, it’s best not to take it daily, because you can need more and more to get the same effect. On the nights when I don’t take it, I take 50 mg of CBN, a CBD nighttime product. That doesn’t help as much as lorazepam, but does help me to sleep fairly well.
Sleep is so important to our health. I always feel better the day after a good night’s sleep. 💤 I’m sure we can all relate to that!
Since I don’t have an “addictive personality” (I prefer not feeling zoned), I’ve not had an issue.
I’ve read about other women on this site who take this medication too.
Good luck and I wish you some worry-free nights!
Hugs, Pam 💗1 -
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Came across the song in FB. Wanted to share.
https://youtu.be/n7Q6MPo772s?si=V1nckgIb-fI6hLRV.
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@brutersmom Thanks for the link to the song. It was very powerful!
Hugs, Pam 💗0 -
I’m officially at my 3 year cancerversary of my stage 4 ex. I didn’t know if I would even be here! And I’m doing well.
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Aj. I am 3 years as well. Plan on a bunch more.
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Ladies, I am at 1.5 years, just half of where you all are. You are such inspirations!
Hugs 🤗 and happy holidays 🎄Pam
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Hi all, happy holidays to all of you :) 2025 has been pretty good . In April my husband and I walked 100 miles of the Camino De Santiago in Spain, bucket list trip. This Christmas, both kids came home for the holiday and the 4 of us have had a wonderful , lowkey visit .
I just started year 7 of MBC !08/2025 I started Verzenio (with fulvestrant ) and my scans in mid December were good :) the meds are working well. I've been on fulvestrant the entire 7 yrs . Had slight progression on ibrance, switched to Kidqali which made my liver enzymes jump too high so started Verzenio once the liver enzymes returned to normal. I do have fatigue from the Verzenio , first time I've experienced fatigue from these meds but I'm modifying my activity and it seems to be ok.
Onward to 2026! I appreciate everyone who shares on these boards and have learned so much from all of you .
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@aprilgirl1 Wow-I can't believe you and your husband were able to walk 100 miles on the Camino De Santiago! So glad you were able to do that. Nice that all of you were able to be together over the holidays. Best wishes for 2026!
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@aprilgirl1 you go girl! The Camino was on my bucket list but now with my hand foot stuff it’s off the table. And year 7 is amazing!
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@aprilgirl1 Congrats on 7 years and walking 100 miles of the Camino De Santiago in Spain. You are an inspiration!
Hugs, Pam 💗
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@aprilgirl1 - Hey, congratulations on both the walk in Spain and the number of years of stage 4! Keep it up, you are a wonderful example and inspiration. Happy New Year to you.
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@aprilgirl1 it's so great to hear all your latest, especially that the verzenio is doing its job! And such a wonderful experience you and your DH had in Spain. It's inspiring, as others have said, both to know you're doing the things that are meaningful to you, and that your latest treatment is working. Love you!
I'll be starting Year Six (sounds like I'm in graduate school or something) in January, I remain shocked that I'm still here. A good friend is getting married for the first time later in his life, and my goal is to attend, wear a fabulous dress with a fantastic hat (that thin MBC hair, don't you know!) and dance.
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Today starts my 6th year. It's 5 today. Rough time but had some good times too.
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Thanks for the support :) I have to say , I did need to modify the walk for 2 of the sections. In a way I was "lucky" in that it was planned for April 15th and I had to go off of Kisqali due to high liver enzymes on April 1. I couldn't drink in Spain but was happy I didn't need to cancel the trip .
@AJ - you can modify if you want to walk the Camino . All abilities were welcome and that alone was inspiring .@sf-cakes six years is amazing , on your first line of treatment ! I only got 5 1/2 years on first line .
All of you are inspiring to me. We are in this together.4 -
@aprilgirl1 What section did you hike? I'd love to do that. @forza has gone, too!
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@tougholdcrow , we met a group in Sarria, Spain and walked the last 100km to Santiago Compostela. We joined another couple and their brother / sister in law and some friends of theirs . The trip was organized through www.Santiagoways.com and they scheduled the hotels, meals and also transport your luggage (of course there is a weight/ size limit on the luggage ). There were many people on their own, a few in wheelchairs , and bikes. Twice I took a short taxi ride to rest my feet as I had a plantar fasciitis flare up 1/2 way through the trek.
I'm very glad I did it and highly recommend Santiago Ways . Many lf the hotels had Hostels attached that looked very nice .
A month before I left I had my quarterly scans . The scans surprisingly showed my appendix enlarged and inflamed although I didn't have any pain (yet), this is technically appendicitis . I was put on heavy antibiotics , stopped Kisqali and met with an appendix surgeon . He ordered a closer appendix scan 12 days later (after I finished the antibiotics ) and my appendix was back to normal and showed no blockage (which often causes appendicitis). He knew I had this trip planned and told me as this scan shows my appendix was back to normal I should go to Spain . "Live your life" as I know with your cancer dx things can change . I appreciated his advice .
I modify as much as I need to but I am trying hard not to let fear control my decisions and want to continue to travel and adventure. Of course, with my doctors blessing and I'm not taking crazy risks. I need easier travel so having the travel company transport our luggage and set up the hotels was really nice .
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@aprilgirl1 That sounds excellent. I may take your advice. And so glad you were able to do it after the appendix scare. Maybe I will plan this after my scans. "Live your life" and being "part of the dance" is an excellent way to be.
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it is so nice to hear your uplifting posts. And getting on with your lives and walking. I was reading on the internet and really have to stop because there is ALOT of doom and gloom. I go to my second radiation appointment tomorrow, and am hoping life is going to be more than Dr’s and scans and meds. Like I wish I would have had my hair dyed a month ago before I got diagnosed again, or my toes done. I am wondering if I will ever have the energy to do this. Or take a walk around the block. Is the beginning the worst? I guess I am just feeling sorry for myself but aside from this community, I am going to stay off internet. They scare you to death. Have a lovely night ladies….and thanks again for giving me something to look forward to.
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@xsuzx The beginning is very stressful and uncertain. I felt much like you do right now when I was first diagnosed 19 months ago. It seemed liked I lived at the cancer clinic and hospital. It will get better.
I don’t read the gloom and doom stories online. BCO is so uplifting and filled with encouraging members. I prefer to have a positive outlook whenever possible.
Just remember that those radiation treatments are kicking cancer in the butt!
Keep us posted on how you are doing.
Wishing you a wonderful new year!
Hugs, Pam 💗3 -
I did something tonight that left me feeling positive. The internet is usually negative about cancer, especially since my primary mets were in the pleural of my lung. My cancer returned in 2021 but it was not confirmed until January 3rd 2022. This was because I had taken anti inflammatory meds and was miss diagnosed with gastro reflux. I didn’t even suspect it could have been cancer until I couldn't take a deep breath. I put my diagnosis, current status of NED, exercise program, and my Guardant360 results into ChatGPT. The results were encouraging. Alone they were all gloom and doom, but when I put them in as one question the answers were re worded and a positive picture was the result.
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