Bone Mets Thread
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I just remembered....they sell a liquid magnesium at the health food store, it’s like a spray...I have used that successfully when the pain is intense and close to the surface...like my lower back....arms or even the liver area...
I'm not sure of the mechanisms...maybe magnesium just relieves inflammation...
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Shetland do you know anything about this trial? Looks like a major breakthrough for ILC
A new lethal weapon against lobular breast cancer
https://breastcancernow.org/news-and-blogs/blogs/a-new-lethal-weapon-against-lobular-breast-cancer
Creating brand new drugs can take a long time, but luckily drugs that block ROS1 already exist; crizotinib is a drug currently used to treat advanced lung cancers, and could be a potential new treatment for lobular breast cancers that have an E-cadherin mutation.
Looking to the future
This new discovery is so promising that Breast Cancer Now scientists will be carrying out a clinical trial to test the effectiveness of crizotinib in patients with E-cadherin defective, ER positive, advanced lobular breast cancer. The ROLO trial, funded by the Breast Cancer Now Catalyst Programme in collaboration with Pfizer, is the only recruiting study worldwide investigating new therapies specifically for advanced lobular breast cancer patients. Professor Lord will also be continuing to build on his recent discovery in his own Breast Cancer Now Catalyst Programme research project, investigating the effects of crizotinib and another ROS1-blocking experimental drug lorlatinib in breast cancer.
With E-cadherin defects being one of the most common genetic changes in all human cancers, treatment with ROS1-inhibitors such as crizotinib could potentially be useful in treating a number of other cancers, including stomach cancers.
Synthetic lethality is still a relatively untapped resource, but these new results could be paving the way for the first new synthetic lethal breast cancer drug since PARP inhibitors, and a new lethal weapon in our armoury against breast cancer.
Damn this trial is in the UK
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PaulineK,
Your MO may just be cautious about lots of scans as it’s difficult to know if increased sclerotic lesions are the cancer growing or if it is healing. There is a common misperception that sclerotic lesions always indicate healing. This is not correct. In fact lesions can either be lytic (eating into the bone) or sclerotic (adding to the bone). I believe it may be an indication of how quickly the cancer is spreading with lytic being more aggressive but I’m not 100% sure. (My assumption is based on my own experience - my cancer appears to be slow growing.)
In my case I seem to have entirely sclerotic lesions but they are extensive (hips, ribs, spine sternum, scapula, etc). While the CT scans in April 2017 and July 2017 were reporting significant progression in my bones my MO held the treatment steady as it’s hard to know if it’s healing or more tumours. However, in August 2017 I reported new pain and we found there was some thickening around the capsule of the liver suspicious of metastatic disease. Time to move on to a new treatment. It seems MOs often don’t jump ship with possible progression in the bones - likely because it’s not life threatening.
Knowledge comes with time Pauline. We all, unfortunately, get to become experts as we navigate through this.
Hugs. Pat.
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Frisky, I discussed the ROLO trial with my second opinion doctor at UCSF about 6 months ago, a lot of docs (all?) in this country seem to think that ILC is garden variety breast cancer and is treated the same as others. Anyway, someone at UCSF is consulting with them -I think because UCSF has had lots of experience with Crizotinib with lung cancer. One of the great things is that this drug is already approved, so if the ROLO study shows good results, it can be used here off label without waiting for it to be approved. It is exciting!
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thank for the update NKb, I hope the results come out soon enough...
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Frisky,
I contacted the ROLO people asking if non UK folks could participate. It is a very small trial and they are not letting anyone outside of the UK participate in it. However, the researcher said that if they have success, they hope to expand the trial.
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thank you BevJen for the update...I hope the results are good and we can all benefit from the medication.
Have you tried getting it prescribed as an off label?
I'm pretty sure, unfortunately, my MO wouldn't do it...
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Shetland,
Sorry to hear about new pain! I combine extra strength Tylenol and Advil for extreme pain. No more than a week as it’s tough on the body, but I found it more effective than Tramadol. Usually by then things are healing or at least a little better. My Onc supports this combo for short periods.
My Chicago Onc does bone scans to compare sclerotic lesions over time. (I had a bunch...that’s the medical term...or was it holy s!/“#, they’re everywhere?)
My Colorado Onc just does CT scans of the abdomen. She’s more concerned about organ involvement.
Only one PET about three years ago...
Thanks everyone for the ILC trial info!I’m really interested in any news about ILC treatments. Waiting for the other shoe to drop after four years. I did start the Fenbendazole protocol a few weeks ago. It can’t hurt.
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Just checking in. I posted about chronic pain a few days ago and asked what you all use. Then Shetland also posted about the pain issue. So... sounds like Tylenol, narcotics of Norco and Tramadol, and Magnesium. I am planning on discussing with my MO at next visit in 2 weeks. I have brought up the pain issue in the past with my MO and she only recommended Tylenol. I want to let her know that the chronic pain, with the AI use also, is really affecting my ADL's and sleep. And that Tylenol and heat are not taking care of it. But in reality, it sounds like not too much out there for chronic pain and for us cancer patients. We don't have a pain clinic in our area. We do not have access to acupuncture in our area (I have asked about that before). Maybe physical therapy?? I am not at the level of needing the big guns yet-morphine. But chronic pain can really wear on you. Adds stress and messes with your emotions.
Any other ideas for chronic pain, please chime in. Thanks.
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Candy, year's ago, when I was weak and in a lot of pain, I used to soak in a hot bath with 5 cups of Epsom salts dissolved into it....and would get a huge relief.
I've noticed over the years how my biggest problems seem to be affected by a lack of calcium and magnesium.
For example, I went through periods of out of control diarrhea, that was immediately eliminated by the consumption of a cheese sandwich....if I don't consume a little cheese every day, the problem returns.
I'm not sure what magnesium and calcium have to do with ILC cancer, but these minerals seem to greatly affect my wellbeing. I hope this is helpful to you in some way...maybe they are anti-imfiammatories?
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Frisky,
I have not asked my oncologist for Crizotinib prescribed as off label as of yet. I am very early in my treatment with Ibrance/faslodex, and haven't even been scanned yet since I started it. I'm also early in dealing with my current MO, so treading a bit lightly there as well. Once I have my first full set of scans, I'll push for other approaches if the scans are not great, since I have 25 mutations that show up in my Foundation One report, so lots and lots of drug possibilities and combos there.
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Yes, heat is what I've used. I don't have bone met pain, but I have had a painful knee due to falling on it, for many years. The heating pad helps a lot. Always used it for menstrual cramps, too.
There's also a possible benefit in that cancer cells don't survive well in high temperatures - whether or not heat from a heating pad could reach the cells in our bones is certainly debatable, but I like to think it might help a little in that regard, too.
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Thanks for the feedback everyone. I am going to revisit the scan question at treatment next week.
Olma61 - my MO said we would do scans down the road. My disease repose to the chemo is monitored by blood tumor markers. I think I would just feel better knowing it wasn’t spreading beyond my bone and marrow.
S3K5 - I am in south jersey and get treatment at UPenn in Philadelphia. I went to MSK for a consult but it’s way too far to drive once a week. The MO there had the same treatment plan. I get Abraxane and Tecentriq infusions.
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Shetland, so sorry about the clavicle pain. I hope it's just a twisty injury and nothing more! You've been through a lot lately.
As you know, I've had widespread ILC bone mets for almost a decade. I've had periods of pretty bad pain particularly when treatment wasn't humming along so well. I've also had prolonged periods that weren't nearly so bad. Here's what I've come up with--
Yes to the minerals. Never thought about it being an ILC thing. Huh. But yes. I cannot get by for very long without magnesium and calcium, and I also take trace minerals a couple times a week (potassium, etc). These treatments we take can zap electrolytes in a big way, especially if they cause diarrhea like the Verzenio I'm on now. WHEW. I use a magnesium cream on feet and joints at bedtime, too.
I took Vicoprofen as needed for a few years, when the bone pain was at its worst. (I cannot take Tylenol for a couple reasons, one being a double-whammy case of the MTHFR mutation which prevents me from metabolizing acetaminophen, the other being my history that you are already familiar with of those four liver failures when I had the common bile duct mets in 2013.) When everyone got twitchy about oxy overuse, my onc started advocating that 3 Advil are more effecting than Vicoprofen. She may be right, at least in my experience. I am not convinced that oxy actually relieves pain worth a flip; I suspect it just makes you not care as much.
I've used lidocaine patches and they help. (The last batch I got was from a different manufacturer and they are awful. Instead of the soft, flexible ones I've gotten for years, these are slick plastic-y things that stick to themselves instead of my skin. YUCK.)
Fentanyl patches gave me a bad reaction. May have been due to MTHFR again. I was loopy and my ankles swelled and I had SOB. Thanks but I'll pass on those from now on! Other people seem to do okay with them. Just be aware.
Hot baths help me a whole lot. I like 107-108F on my yellow duckie bath thermometer.
Since hot baths were helpful for me, I bought a BioMat with amethyst and jade stones (FAR-infrared heat, PEMF). I LOVE THIS THING. I like to imagine that it is penetrating heat all the way to my bones and frying the little scoundrels. I do have to keep my lymph-sensitive arm off of it, which I do with a thin down pillow, or that arm can start feeling a little congested. (I also keep that arm out of the bath water.)
Hope some of this helps. Hang in there. Fie on bone pain!
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Good ideas Lulubee! I’ll try swapping out Tylenol with magnesium and adding calcium to the mix to reduce achy-ness.
So far I’ve mostly had the generalized stiffness and achy feeling that I try to attribute to age. A few truly painful times couldn’t be denied. I’m so grateful to this group for all the suggestions on dealing with pain and everything else
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FYI- Ladies watch out for Calcium and Magnesium usage. Not good to have increased blood levels. My blood calcium level is within the normal range, but on the high end. And I do not take any calcium supplements. Last magnesium level check was normal. But taking too much supplements cannot be good. Unless you are losing by diarrhea- Verzenio use. Just be careful.
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Thank you all for the replies and info! I saw my onc and she thinks the right clavicle area pain is referred pain from the liver. And I forgot to ask her opinion about pain meds, so I will email her the ideas I’ve collected here, including heat. I was thinking of starting magnesium anyway, as part of a bone health protocol (COMB) since my last DEXA had worse osteopenia. She wants me to have zometa every six months but I am very afraid of ONJ.
Whoa, whoa, whoa — Lulubee, I had forgotten the bile duct part of your saga. If you get a chance and feel up to it, could you tell me all about it? Maybe in a PM or on the thread I started called “Bile duct stricture could be ILC mets”? I’d be ever so grateful. A hot bath sounds wonderful, Xeloda feet sticking up out of the water of course, and maybe it would help stave off stent infection, too. I’m glad you have a yellow ducky thermometer and not a plain one. I have a yellow ducky bath tub faucet cover (to cushion it). Shall we all sing along with Kermit the Frog? “Rubber Ducky, you’re the one, You make bath time lots of fun, Rubber Ducky I’m awfully fond of you (boopboopy do)....”
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I am an ILC Metster.......my understanding is that the gold standard for bone scans is the radioactive one showing exactly what is going on in the bones and if there is any osteopenia.......I get very little information from my oncologist so have ordered the actual images from the hospital and am waiting for them to arrive......
Lulubee you have given me massive hope....10 YEARS as an ILCM......wow .....I was told like perhaps two years....usual doom and gloom........makes no sense as ILC is slow growing wherever it is......
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Iwrite, Frisky, BevJen, Nkb, candy, Lily, I want to make sure you know about the Lobular Breast Cancer Alliance at lobularbreastcancer.org. Their site has news about treatments and trials, including that ROLO trial. My most recent Guardant 360 didn't show much, but it did show a low-level mutation in MET, which is related to the ROS1 that Crizotinib targets, so I'm keeping that in mind.
Jaylea, waiting to hear your scan results next week. 🤞
Edited to correct web site address
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How can we get the blood tests done to test for mutations etc? My oncologist will not do them.........
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Shetland- Thanks for the info about LBCA.org. I will check it out.
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Lily, I wonder if your onc just won't do the blood test for mutations YET. If hormone therapy is working for you now why do you need to know now? Knowing which mutations would help your onc to know what meds to switch too when you progress. Then it might be determined through a biopsy. Till then.lets hope its years off.
Gailmary
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Shetland, be careful with that hot bath! I made that mistake when I was briefly on Xeloda. Despite the fact that I was only on my third cycle and kept me feet out of the water as much as possible, I ended up with huge blisters on both heals after giving in to the urge for a soak in the tub. HFS can be brutal with Madame X. I also made a point of slathering on moisturizer. It doesn’t help that I walk a lot as a dog owner. Of course, with you being a dancer.....
Lily, bone scans aren’t always the gold standard either. Each of us is quite unique apparently. In my case, bone scans always come back as “significantly underestimating the burden of disease in this individual”. My MO relies more on CT although he does order bone scans every six months. My suspicion (albeit not confirmed) is that my slower growing cancer does not pick up the radioactive tracer the way that a more aggressive cancer would. If my assumption is correct then ILC mets might not always light up in bone scans.
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Thank you for information....I am not on hormone therapy as only 6% ER positive now and PR negative....both were 90% plus before.....
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Hello, I haven't been on this thread in a while. Have had a good long run on xeloda which cleared liver mets (24 cycles) without any issues until last scan. Spots showing up on bones in spine and pelvis so onc wants to do 3 weekly docetaxel (taxotere) for 6 to 8 sessions. Hormones have never really worked so it looks like chemo is only option. Has anyone had good results on this. Had it originally in 2012 and it was tough enough but am hoping it will work on my bones. Have done abraxane, Ibrance and xeloda in last 3.5 years
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Correction to the web site address in my post above. It is lobularbreastcancer.org.
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Lilly, we have a similar treatment history. I had two years NEAD on xeloda and now two tumors have popped up in the liver. Since X has kept the other numerous liver mets gone, my onc and I do not want to drop Xeloda, so we are adding Halaven/eribulin. Her other option was taxotere but I do not want those harsh side effects. I would do Taxol or abraxane, though. Did you stop abraxane because of progression or because it had worked and you could move on to something milder?
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Hi Shetland, thanks very interesting. Very helpful to share. I was doing great on X ut when the bone mets showed up he wanted to change. My onc picks. I don't get a choice, ever! He is very experienced and always rationalised it very well. I trust him because he has seen it all. I did abraxane in 2016, it was def easier than the first. Don't think I got Nead but def reduced. In the UK we do 6 to 8 high dose cycles of iv chemo. We don't seem to do any thing continuous, do people stay on abraxane longer in USA? When I finished that I was put on hormonals which we decided were not working. Then Ibrance which worked for 9 months or so. He says we can maybe revisit X in 2 years all being well. I know taxotere is harsh but I'm hoping that it will get me really good results so maintenence drug could be used for a while... Until the next crisis!
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Hi lLilly. Just started Taxotere again for progression in the bones. I’m ILC but Er + bone mets after 12 years clear. We did a bone biopsy in the spring and all markers were the same. I did Herceptin and letrozole for the last 2 years. Now herceptin Perjeta and Taxotere
I had radiation this summer for pelvis,sacrum and thigh bone. I just had NEulasta for low white counts I’ve had since AC. My biggest complaint is bone pain from neulasta.
I hope the Taxotere works for you. My onc seems to feel that we can stabilized again if we blast it with T. Radiation helped bone pain and function. Aleve and tramadol today. Not great so just resting all day. No nausea. Hope you get relief.0 -
Hi Maire, gosh I remember the neulasta bring very sore! It only last a day or so ut def helps with recovery from cycle. Hope you are taking it easy and hopefully it will all be worth the discomfort. I start Thurs the 19th. Again very interesting the drugs used in combination. I want to chat yo my onc about what he's uses together.
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