De Novo Stage IV
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Thanks for the support KBL. This will be my first endoscopy. I’m a little nervous but my Mom had one done recently and told me it will be easy. I hope my doc will take biopsy samples when he does the procedure. I’ll ask but I’m not sure whether my insurance will cover that. I will remind him that my one maternal aunt that didn’t get breast cancer got colon cancer, so I want to be extra cautious
The info on FES PET is interesting. I hope the trial is successful in finding a better way to test for lobular. My doctor doesn’t want to request a PET scan for me, but I think it is because insurance won’t pay for it. Even so, I have not pushed for this test because I don’t know that it would work for my cancer. The regular PET checks for increased uptake of sugar, which I would think works better on active/fast growing cancer. My Ki67 test showed that while my cancer was aggressive, it was a very slow growing cancer. It’s a bit of an oxymoron.
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cyathea: I have had three endoscopies over the last decade or so. It was easy. First one found a polyp that was biopsied and was all clear. The other two found nothing of concern. I hope yours works out well but don't be afraid of the actual procedure.
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Cyathea, endoscopy is the easiest test I’ve ever had. I really never have any pain. I’ve had four since my diagnosis. The first time he took five samples. When he realized I had cancer, he went right back in and took 12. I have endoscopies when I feel I have trouble eating again. I now have a 2cm hiatal hernia. I think that’s small and isn’t causing an issue.
If I knew back when what I know now, I would have had one FDG PET and no more. Gary Ulaner is a lobular expert and says if it doesn’t show up the first time in FDG, it never will. I could have saved myself a lot of time and money. I’m covered in cancer, and not one ounce shows on a PET or CT. I have learned so much since first being diagnosed.
Good luck, and please let us know how it goes.
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Today is my official two-year anniversary of when I first found out it was de novo cancer, even though it was actually there since 2013. August will be eight years since the first time I heard it might be cancer in my spine and was led down the wrong path. I have been having some issues lately and am thinking of switching meds. I don’t trust that my body will give the information to know when the right time is to switch. Has anyone switched without officially knowing whether there is progression?
I am in contact with a clinical trial for the FES PET, so if I’m allowed in to get it, I will wait to switch until I get back. Now they need to hurry and tel me.
I had a great visit with my daughter today. She brought my grandson and stayed most of the day. There were a lot of tears flowing this morning by her because she sees me in pain and not able to watch my grandson for very long by myself and it breaks her heart. I’m sad for her. I know she will be okay without me, but it still sucks for her because we’re so close.
Hopefully I can get the pain under control and get back to playing with my grandson like I used to.
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KBL, that’s a tough call and I’m sorry, I don’t have an answer but have you been scanned recently and were there any signs of progression?
I only sort of switched last year when my original bone met became active again but the switch was dropping tamoxifen and perjeta and replacing those with Xeloda and Tukysa, my Herceptin remained, as it is critter HER2 and has served me well.
If I had no signs, I’d probably stay the course but if my instincts were talking, I tend to listen. Also, should you change treatment and it’s not working out as planned, can you go back?
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Mae, yes, that’s my problem. I have ILC, so seeing what’s going on has been extremely difficult. I had significant progression in my spine according to an August 2020 MRI from 2016, but that’s the problem. They didn’t do a scan when I was first diagnosed in 2019, so was there progression from 2019-2020? I’ll never know.
I see people on threads say that their cancer is being knocked back from the meds. Mine is still everywhere with no significant knock-back. My 27-29 was 490 when I started two years ago and is hovering at 330. It’s been stagnant for four months. I had a CA-125 done, and it was 1440. They didn’t even bat an eye and said it’s just because the cancer is everywhere. I am having the abdominal MRI this Wednesday because the CTs see no cancer whatsoever, so I’m hoping MRI can tell a better story since it works for seeing the cancer throughout my bones.
It’s a really tough call.
Has anyone in this thread been on Ibrance longer than two years? If so, has it kicked back your cancer
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I was on Ibrance for three years, but the scans were showing slight progression each time for the final six months, and new tumors in the liver on the last one. I was trying to postpone the switch to "real chemos", but I had to concede it was finally time to let it go.
I've been on Xeloda for the past four months, and it has not been as bad as I feared. The side effects are mostly fatigue, some tingling and burning in my feet, and some diarrhea. Most recent scan showed it is working.
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KBL- I am sorry to read of your struggles. I label myself ILC because my initial biopsy said ductal with "lobular features". ??? So lobular or not? "Features" what does that mean? I have been on Ibrance for 40 cycles now. Just now showing some "small, steady increases" in the liver mets--- the words my MO used. We just tried to do another liver biopsy to see if changing, since the increases. I posted on the Liver Met Thread of the ordeal. The IR could not get good samples because he said the tumor was "fibrous". Does lobular make it fibrous? Doesn't lobular grow in sheets? Mine tumor was round--- I saw it on the ultrasound. But the consistency was fibrous.
Anyway, I am sorry you are going thru so much difficulty. MBC is so sneaky sometimes and sometimes hard to decipher the scans. My bone mets does not show up well on bone scans, even though my MO says bone scans are usually great for bone mets.
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Hi, Candy. I’ve been keeping up with your struggles as well. I’m sorry you had such a rough time with the biopsy. When I wrote this post, you’re the first person I thought of because I knew you had been on it more than two years. I hope they got enough sample to test. If it’s positive, will you be switching meds? Have they discussed that with you about what would be next
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KBL- My last scan March 22 when compared to Dec and Sept scans showed the "small steady increases". So at my last appointment with MO she mentioned maybe a trial--- an oral SERD, I think--- but she didn't give specifics. We need to see if still HR positive/ HER2 negative. Also, we are hoping for Tempus testing to direct us. But..... I don't know if they got enough from the biopsy to send to Tempus. I do not have another scan set up yet. I would think we will be, maybe, doing another scan and then move to the next treatment--- based on the Tempus results and the next scan and how much things have grown. I guess that is the plan. I see MO on May 17 to discuss Tempus (I hope) and the next steps. It is a tight rope-- with not wanting to move to another treatment too soon, but with the continued growth over the last months will things keep growing and pick up speed??
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KBL, I hope your MRI on Wednesday gives you some usable info, and a clear(er) path forward. I hate to hear that you are in so much pain. Sending a big, gentle cyberhug for you. Good luck on getting in the FES PET trial, too.
Candy - I'm sorry you had such an ordeal with your biopsy. You really showed persevered to keep going with it. I know how badly you want them to be able to get some answers. Sending hugs your way, too. I've heard others with multiple liver biopsies had different experiences, piece-of-cake easy, and not so much. I don't know what makes the difference.
I've only had the one liver biopsy that got my bc diagnosis last year - it was easier than yours, I think, but they weren't prepared for me to have pain, and so it took a long time to get pain meds on board. I don't doubt I'll have another one, since that seems to be the best, or only, way to get the info we'll need.
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Candy, that’s got to be so hard for you. I tried three different things for testing, Caris, a free test for PIK3CA, and a blood biopsy at Foundation One. No answers. The samples were too small for some. I hope you can have the testing.
SeeQ, thank you. I am able to cope with the pain most days. I just would like my energy back. Hugs back to you.
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I’m praying for all of you. I’m so sorry you’re on pain, having such challenges. It breaks my heart and also scares me because it will inevitably happen, in some form to me. Please continue to fight the good fight
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Thank you, ChathamLady. I appreciate the prayers.
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Had a telehealth with my doc this morning. She's going to do some bloodwork next week for rheumatoid arthritis. My mom had it. All I want is an answer to the joint pain. If it's rheumatoid, I can deal with it.
Candy, I think you have rheumatoid. Can you tell me how you were diagnosed. My mom is deceased, so I can’t ask her.0 -
KBL, while that doesn't sound great, at least it would take away the cancer worry.
Getting ahead of myself...I was reading anecdotal stories, on another thread, about the COVID vaccine causing flare ups in patients with auto immune disorders (which includes RA, right?) So... if you've had your vaccine...and... it turns out it is RA...maybe that would explain/contribution to a recent change???? I know, pure speculation on top of a lot of maybes.
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That would be an interesting finding. It always seems something always causes something else.
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KBL, best wishes on your way, I really hope you get to the fes pet soon.
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Thank you, snow-drop.
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Had my abdominal MRI. Organs seem okay, except I always have poo in my colon, and I have sludge in my gallbladder. I’m not having symptoms with the gallbladder. What can anyone tell me who has a history of sludge?
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KBL, I can’t answer your question but I am so happy to hear that your organs seem okay.
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I take it the stomach isn’t identified on abdominal MRI. It doesn’t mention it. That’s where my cancer is besides every bone and bone marrow.
Thank you, ilowen.
I took off the bandage where they gave me the contrast. I must have pulled the scab off with it. I was bleeding pretty good and had a huge bump. Rushed and out the bandage back on. Ouch.
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Finally set up a medical marijuana appointment. Not sure how this will go, but I do not want to go on medication, so we shall see. Anyone in this group have words of wisdom or recommendations
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KBL,
I have been using cannabis for many years. What questions do you have specifically? You may also want to check out this thread on cannabis basics:
https://community.breastcancer.org/forum/79/topics/874792?page=1
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Hi, exbrnxgirl. I am trying to figure out what will be best for me, so here is what I’m looking for. I don’t really want the high. I more want pain relief and help with sleep. MM is the only thing available here, not recreational. I tried CBD sublingual off the shelf for a few nights, and it wired me up. It didn’t make me sleepy. I’ll read your post shortly. Thank you.
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kbl,
In CA, where I live, the difference between medical and recreational cannabis is not significant. If you have a medical card you can buy a larger quantity each day, pay less sales tax and have access to products with higher THC content. However, in terms of choosing products, med vs rec shouldn’t really matter. Products that contain CBD purchased from a dispensary are cannabis derived. CBD products that can now be purchased just about anywhere are hemp derived. Cannabis derived CBD is supposed to be superior to hemp derived. I have never tried the hemp derived CBD. A bit of THC makes CBD more effective. The ratio is expressed as CBD:THC. If you look at formulations, usually tinctures or capsules, that are predominantly CBD, let’s say 18:1, it would be very unlikely that you would feel high. I have even seen formulations that are 32:1. These CBD:THC levels can also be found in edibles from chocolates to cookies to gummies and more. Some of it is very high quality and incredibly delicious but they’re loaded with sugar. Feel free to ask me anything
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Thank you so much. I’m sure I will have questions after my doc appointment. I can’t remember to ask her everything. One question would be what would be the best mix for sleep. Also, the best mix for pain. I have had hot flashes for almost ten years due to hysterectomy, not cancer. I have them dayand night. I will be asking her if there’s a mixture that can help with hot flashes as well.
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kbl,
Forgive me if you mentioned this earlier but what type of doctor are you consulting regarding cannabis use? I ask this for two reasons. The first being that most doctors have little to no knowledge about cannabis and it’s uses. The second being that since there is a paucity of research and/or trials there isn’t a lot to guide doctors or anyone regarding optimal formulas for ones intended purpose. This is mainly due to cannabis being a Schedule I drug, like heroin, so it is considered to have no legit medical use and is federally illegal.
Bud tenders or other advisers in a dispensary can point you in the right direction but... you will have to be your own personal clinical trial. For instance, let’s say you get a recommendation for an 18:1 tincture. You try it a few times and it doesn’t seem effective. The dispensary might then recommend a 12:1 formula and with a little experimenting you should be able to find something that is effective. I think cannabis can be very effective for symptom relief but you most likely will need to go through a bit of trial and error.
Although research is still very scarce and you will need to do some self education, legalization has allowed us to buy clearly labeled products (labeling requirements vary by state). Labeling helps understand specific strains (within the two major plant varieties, Indica or Sativa), growing conditions (indoor, outdoor, organic, etc.) and dosing (edibles, oils, tinctures).
This is probably more than you ever wanted to know but I’m a teacher and a die hard info-geek so please forgive me 😊.
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exbrnxgirl, Where I live you must see a doctor licensed in medical marijuana. I am seeing her first. Then I will be going to a separate dispensary. I do believe it will have to be trial and error on my part. I will keep trying to see which works best and doesn’t give me a high I don’t want. I’ve done a little research but not enough yet. Once I see the doctor, it takes around two weeks to get the card. I will be doing all kinds of research in between. I really only want a capsule, edible or some drops under the tongue, unless they are too strong. I have a lot to learn, as I’m very naive when it comes to anything like this. It took me a few months to work my way to make the appointment. Lol.
Thank you for the help. I’ll be back with more questions, I’m sure.
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KBL: cannabis is legal here, but previous to legalization I had a card for medical cannabis. For most use, I like CBD oil that only has about .05 THC. About 1-2 droppers full. I find it helps with mild anxiety. Among edibles, I find 2.5 mg is fine for me. 5.0 mg is as high as I want to go. Considering I started smoking dope in 1968 I have become a bit of a lightweight. I prefer Indica to Sativa. Start small/just a little and go from there. Overdosing is uncomfortable with THC but it isn't fatal. Edibles are the most dodgy since it can take a few hours to hit its maximum effect. Beware! They taste delicious and you can easily eat too much. You can cut chocolates and gummies up into smaller doses. My DH likes THC infused drinks. In BC, no edibles/beverages can be higher than 10 mg per unit sold. So I can take a 10 mg chocolate bar and cut it up into four for my 2.5. I like a "little buzz" but I don't want to get too stoned.
I have an Indica I really like if sleep isn't coming. A few puffs, back to bed and I am out until morning.
Enjoy the experimenting.
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