Bone Mets Thread
Comments
-
Hi fellow Bone-Metsers!
Question about yoga for anyone who regularly practices: What poses do you avoid or adapt (if any) to avoid injury or compression on the spine (or hip, etc.)? I think I've learned that poses that encourage a rounding of the spine should be avoided (?) but what about the opposite, like cobra?
0 -
GoKale, here's my Taxol story.
I used Taxol for the first 4 months of 2021. The first infusion wasn't too bad; I ate and drank normally. I shaved/lost my hair, and then the side effects started kicking in. I only made it through 5 infusions (they had hoped for 8). I went to the 6th, prepared to refuse it but wanting to meet with MO. He looked at me and said, 'no, we're not doing a 6th' even before I could say a word. This was as bad for me as the adriamycin 8 years before, maybe worse. I was a zombie; I had terrible body aches and pains; I had mouth ulcers so bad I could only do liquids -- even a grain of rice hurt. Magic mouthwash didn't help, even various formulations. When I say I was a zombie, I'm not joking. I gained 10 lbs of water. Fortunately I don't live alone. Other people have said Taxol wasn't so bad for them. I hope that's the case for you.
Definitely get a port. We have to get so many arm sticks for blood; save your veins.
Good luck.
0 -
gokale I did taxol x12 in 2018. Then did taxol for 9 months for mets and then switched to abraxane for another year so 21 months of taxane. Needed a dose reduction but then was fine as far as activity. Just the occasional nap, usually near tx day. There's a thread you can check out. I'll be back with a link
Here it is
https://community.breastcancer.org/forum/8/topics/...
Somewhere in that thread is a pic of my icing solution which is just ice packs & oversize socks. I bring a cooler on a small luggage cart with spares & swap out for fresh ones every 20 minutes. The cooler is packed with my gel packs + lots of rigid ice packs to keep everything cold
0 -
Pearl-Girl - thank you for sharing your experience with Taxol. I was told that chemo for Stage IV is supposed to be tailored so that quality of life is maintained, but it doesn't sound like they did that for you. At least your doc recognized it. What did they switch you to? I hope the new med is much more tolerable.
Moth - I am glad to hear that you handled Taxol well. Thank you for sharing. I love your idea for icing the feet and hands because i can put that together with short notice. At this time, I don't know what med I will switch to so I don't think there will be a lot of advanced notice if I do start chemo.
I have had two progressions with Ibrance and two different SERMs so one thing I have to ask my doc is whether or not I can afford another progression. The doc I saw yesterday indicated that IV chemo would be the more aggressive option to hopefully knock this disease back to maybe allow other options later.
Thank you, both!
0 -
GoKale, I went off of all cancer treatment. I decided I didn't want to live that way anymore. They did reduce my dosage along the way before we stopped. I've progressed on everything that was less toxic, so I tried one last chemo (Taxol) last year. I still have active mets, but only in my bones. I'm managing bone pain and living my best life.
0 -
Hoping someone may help me understand something
I got CT scan and it showed my cancer spread more but my doctor said my numbers looked good and looked like they were doing something which makes no sense to me if I spread. She recommends I continue same drug
0 -
Pearl Girl,
Did any of your treatment shrink your tumors or Mets. My first cat scan after DX showed my tumors getting smaller and healing I assume healing of the bones. Did Ibrance not help
0 -
Beth1965 - did your doctor compare the new scan with the old scan and determine that bone mets progressed? I tend to have good labs, but the scans tell a different story. I guess the only thing you can do is ask more questions of your doc or go get a second opinion. I really hope it's better than you think.
0 -
I would definitely push for more answers. Get a copy of the radiology report so you can read it yourself, and maybe try to talk to the radiologist if it's still unclear.0
-
thanks ladies
This is first scan since I started treatment
Have a meeting set up hope it clears things u
0 -
I've heard that some drugs can take up to six months to work so I could see them wanting to continue, especially if it looks like the rate of growth is slowing, even if they are still growing. I hope you get more information soon!0
-
Beth 1965, this did not happen to me but my oncologist told me it can look like there is progression at the beginning its something to do with how a CDK4/6 inhibitors works for some people I would ask your oncologist if this is what is happing.
0 -
Beth- That doesn't make sense to me either and I also agree with Parakeets, depending on how long you've been on the drug sometimes they continue to give the drug more time. If this was your first scan they may order another one in a few months. Definitely ask questions and get that clarified.
0 -
GoKale - More icing ideas: I have used Cryomax reusable gel ice packs for two years for chemo icing. They were originally recommended by someone else on BCO. No mess, no melting and doesn't require help from the staff. They stay cold for hours. I use total of six medium sized packs. I strap two medium sized packs together for each foot and strap two mediums together to insert my hands into. Lately I've been using an ace bandage to wrap the feet tighter
What I don't recommend: I also purchased the NatraCure ice foot slippers, which seemed like an easy solution. But the ice packs are very thin and only stay cold for about 15 minutes. I use them at home occasionally, but they're not practical for chemo icing in my opinion.
0 -
Moissy - thank you! This is great information. Looks like the Cryomax gel ice packs are widely available. These look very good compared with what I was looking at online.
Thanks!
0 -
thank you for the replies ladies
0 -
I received the results of the Guardant 360 liquid biopsy. It shows several Estrogen Receptor mutations, TP53 R306, and MYC Amplification. Does anyone know what TP53 R306 is and what to do about it? How about MYC Amplification? So with the ESR1 mutations, I won't be taking an AI anymore. Does this mean only chemo is the next drug? Also, as far as I know i could take Xeloda (but no HER2 positivity), or chemo infusion of either Taxol, Doxil or Carboplatin. Does anyone have any insight on these? Are some easier than others or more aggressive than others?
I will find out Thursday what my MO thinks I should do.
Thanks!
0 -
Go Kale, have you seen this thread https://community.breastcancer.org/forum/8/topics/...
Tp53 muts or loss is super common. Tp53 is a big tumor suppression gene. We don't have a target for it. MYC similarly deals with cell proliferation m. Afaik, not clinically actionable. You can search for those mutations & clinical trials.
Sorry I have no info about ESR1. Try asking on the clinical trials thread- I think it was discussed there
0 -
My Guardant report made absolutely no sense at all to me - except that I might have the ATM mutation and I don't have the PIK3CA gene. The genetic counselor at Scripps wants me to fill out some paperwork and (maybe?) get another test. I don't understand this stuff.
0 -
sunshine, odds are you have the pik3ca gene, just not a mutated one. It's a gene we all have. Just like we all have brca 1 and brca 2 as well; when they say it's negative, they mean no mutation.
If your ATM gene mutation is germline, your family members may want to be tested. It's a mutation associated with a higher rate of certain cancers.
0 -
GoKale, Hitting the ESR1 mutations is what all of the SERD/SERCA/ARV-471 clinical trials are about- they are perfect for you (assuming you are talking about the typical hotspot mutations) and way more specific at hitting exactly the sensitive spot of the cancer than any chemo. If one responds to the new endocrine therapies for long enough, they find the ESR1 mutants disappear entirely and the cancer cells move back to regular estrogen receptor.There is in addition a tamoxifen-like drug designed to take out ESR1, called lasofoxifene, also very far along in clinical trials
0 -
Thanks for the clarification, moth. I need to complete the paperwork that the genetic counselor sent me, but need my sister to help me answer some of the questions. I don't think a page full of "I don't know" answers is going to be of much help. I don't know how much this might cost. I haven't actually been billed yet for the $9,000.00 for the Guardant test.
0 -
Moth - Thank you for the link to the thread talking about genomic testing. I read the whole thing.
Cure-ious - so interesting because on my Guardant report, it does list a lot of SERDs and a SERM for these ESR1s. However, one doctor said that I should not take anymore AIs, and the first page of the report says next to these ESR1s that Anastrozole, Exemestane and Letrozole are not recommended.
Is an aromotase inhibitor sort of the same thing as a SERM or SERD?
I started off taking Letrozole with Ibrance. Then I switched to Faslodex with Ibrance, so I have done an AI and a SERD. So maybe next I should try a SERM? I like the sound of what you said "way more specific at hitting exactly the sensitive spot of the cancer than any chemo." I think I will show this to my doc.
I will meet with him tomorrow and see what he says. I am tempted to change oncologists, but it's 500 mile round trip so it will be costly and exhausting. I just want to do something that works.
0 -
GoKale, That ESR1 mutation usually is not there in the primary tumor, and the cancer mutates the estrogen receptor in order to get around the AI drugs (some of the ESR1 mutations are inhibited by Faslodex, but not very well) and ALL of the new SERDs/SERMs/SERCAs/PROTACs measure how well they do on the ESR1 mutation because they want that second or thirdline space (as well as firstline) and to be able to say that they block ESR1 in order to show superiority to AI and Faslodex. So that is why they say don't take an AI if you have an ESR1 mutation, because for sure AIs will not block it, but all the newer endocrine agents will (they will have to, in order to be competitive in the market).
Actually, depending on when you switch you might not even need a clinical trial, because Elascestrant already has finished up its phase 3 trial and is expected to ask FDA for approval any day now. They got BETTER results with ESR1 mutant cancers than with cancers that have wild-type estrogen receptor, and so clinicians are saying this may be the SERD that they will be using for ESR1 mutants. Because the ESR1 mutation can be monitored by liquid biopsy, they say they want clinicians to use the test and switch patients to Faslodex or even better to a SERD (when they are approved) before they get progression; there was a trial where they did that and switching over to Faslodex allowed patients who were starting to get ESR1 mutation to stay longer on endocrine therapy overall. Definitely a good idea to deal with the ESR1 mutation rather than do chemo, and with the blood test it can be monitored specifically.
Here is a link to the Elascestrant trial results: https://www.generalsurgerynews.com/In-the-News/Art...
And as always, it would be better to combine it with a CDK4,6i or Affinitor/Everolimus, etc
0 -
Cure-ious - Thank you, thank you, thank you for sharing your knowledge.
0 -
Cure-ious - Thank you so much for this information! So interesting about Elascestrant because one of the docs I spoke with mentioned this drug. She thought it would be approved this summer, but hopefully it will be much sooner like you said. I also printed the article in the link you provided. It's very encouraging.
0 -
I had Covid in early January and I also have a pleural effusion. I feel queasy frequently during the day and I don’t know if it’s a lingering effect of Covid or the pleural effusion. Any tips?
0 -
GoKale, I'm sorry about the queasiness. I don't have any advice to offer - just to say that I hope it gets better. I'll take pain over nausea/queasiness any day!
0 -
Nausea is a pretty common side effect of most cancer treatment, so it's probably a good idea to ask your doctor for meds. Mine gave me Zofran and I use it whenever I think I might be getting queasy. I don't think a pleural effusion would cause nausea? It's not linked to your stomach or anything.0
-
GoKale, Your MO is probably right, even after FDA gets the request it takes quite awhile for the panels to assemble and look at the data from the trial and inspect the manufactering process to get an approval- still to have a SERD available by summer would be so great!
0
