Bone Mets Thread
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ocean. Well said.
Hugs all
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Ryan ...my oncologist told me to have any problem teeth attended to before starting treatment, as jensgotthis mentioned.
This is a link to an article in the Open University about dormancy and progression of cancer cells....a bit scary really, but worth a read.
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hi beauty’s, I’m not sure where to post this so I will start here, I was diagnosed January this year with mets to bone, liver, lung. After surgery for a bigger bone met I was started on tamoxifen. Apparently that was a fail and now onc wants to start weekly taxol indefinitely. I can’t find any info on weekly taxol, it’s all mainly for a time period like 12 doses. It seems like stage 4 treatments have no rhyme or rhythm. Are any of you on weekly taxol? Any tips?
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Chef, I was on weekly Taxol for about three months until it stopped working (progression, sadly). Now I'm on Gemzar IV chemo every week.
When you're doing Taxol, be sure to ice your hands and feet to prevent neuropathy. You can buy ice booties and gloves online thru Amazon. They're very effective...my hands and feet are fine. Be sure to put them on as soon as the IV infusion starts. I had two sets of the booties, so when the one set got too warm, I could switch to the other set. Make sure you take an antihistamine and some Pepcid AC pills about an hour b4 infusion, too. It will help ward off some of the SEs. My drips took about an hour. Now my Gemzar ones only take about 30 mins :>).
If you don't have a chemo port in your chest, I highly suggest getting one. You will eventually run out of usable veins in your arms because chemo is very caustic to the blood vessels. My MO FINALLY okay'd mine last week - after me being on IV chemo for OVER 6 mos. Initially, she wouldn't do it because I wasn't expected to live this long (I have more than 20+ brain mets, and they only gave me about 2-3 months after those showed up).
There is a Taxol thread on bc.org, and those ladies may be able to help more than I can now since I'm on to another Tx.
Praying that Taxol treats you well, no horrible SEs and that it works for a long time for you.
L
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Chef,
I too was on weekly Taxol from Sept 17 - Dec 17. I became very sick from my initial tx of TCHP and ended up being hospitalized for 6 days with severe Neutropenia and C. Diff. It was awful! My onc then said that weekly Taxol is less toxic and has the same results as Taxotere, so we started me on that. We stopped after 3.5 months because she said that you can only have so much of a "taxane" chemo in your system over a certain time period. I didn't know about the icing of hands and feet and did start to get neuropathy, but my Inc put me on high dose B6 and it completely went away. Yay! So I would recommend B6 daily. Also, hydrate, hydrate, hydrate, and moisturize, moisturize, moisturizer. It dried me out everywhere inside and out and head to toe. Ruined my fingernails and toenails too.
I am now off of chemo for a while and getting targeted drugs for my HER2 and AI for ER+. I will add that my wonderful Onc gave me a port from the beginning and I am soooo very thankful, it makes it so easy and my veins on the only arm they can use are shot from all my other procedures and surgeries.
Take care everyone!
Jenny
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I did Taxol from September to February, with a one month break in January before switching from weekly to monthly. My MO said that 18 weekly doses (3 weeks on, 1 week off), which is equivalent to 6 full (monthly) doses, is the max he would allow due to the danger of cumulative side effects. I didn't ice and had no problem with neuropathy, but I was unable to complete the final dose due to extreme D my last 3 doses. It was strange because initially I tolerated it well with minimal SEs beside hair loss and appetite changes, until all of a sudden my body wanted nothing to do with it. Just doing H&P right now until we see at my next scan how I'm responding to it.
As alwaysbepositive said, hydrate and moisturize often! You especially need to drink as much as water as you can the day before, during, and two days following your infusion. My skin was like sandpaper until I started using Cerave products to moisturize, but thankfully I had no problems with my nails.
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Chef, I've been on low-dose weekly Taxol for 17 months. By the end of this month, I will hit my 50th infusion. I wonder about that taxane limit you mention, Lori--my MO has never mentioned that and we just keep swimming, just keep swimming...
Anyway Chef, if you search for "weekly Taxol" you'll find the thread. It's usually kind of a slow thread but people will respond to fresh posts.
In other news... my CT and tumor markers both came back stable today. WHEW. You would think after eleven years I would have figured out how to manage scanxiety better, but this time it gave me an aura migraine. Started losing my vision in the middle of lunch last week, and then my head was tender for three days and I had to lay low. And of course the migraine made me even more anxious because sometimes a headache is not just a headache, as we are all too keenly aware. But thankfully it appears it was this time. Round and round we go.
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lulu. Stable. Yea !!!!
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HI PATTY!
How are you, m'dear?
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Got my port in yesterday, seems smaller than the one I had 10 years ago, which is dandy. Little sore today but came to work so that's good. Start chemo next week, really ready to get some mobility back, we have a trip scheduled at the end of the month and my goal has been to be able to go, if I can't, it will really hurt my psyche you know?
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Congratulations Lulubee!!!! I am so glad you have another scan behind you.
People do low dose, weekly taxanes for years, as well as other chemos. Great strategy if the side effects are manageable. It's called low dose metronomic dosing. It's not something you must stop doing. However, if you have the option of moving to Herceptin/Perjeta there are many reasons to do so.
>Z<
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Lulubee, I am so happy that you scans show that you have stable disease. WOOHOO! I hope you are celebrating. I am doing the happy dance for you.
Hugs and prayers from, Lynne
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Great news Lulu! Love seeing the word stable
Big peaches- fingers crossed that you feel good for your trip later this month!
Baby shower this last weekend for DD2. It was so good to see her celebrating with her high school and college friends. She and SIL are driving back to Colorado today and sleeping in the back of the Jeep. Oh to be young again...I asked DH if he wanted to sleep in the car when we go out in June and he declined the offer. Imagine that
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lulubee that's interesting that you've been on Taxol for 17 months I have read that it's sometimes used as a maintenance drug, usually for HR-, but still considered to be a bit controversial. One thing I'm certainly learning is how differently each of us can respond to various treatments. Is your dosage lower than the standard 80mg weekly dose (the metronomic dosing that zarovka mentioned) or are you doing the full 80mg?
My MO said that for me, the risk of staying on Taxol beyond 6 cycles outweighs any potential benefit, but since I'm HER2+ I had the option to try Herceptin and Perjeta. My cancer was responding so well to Taxol that I was hoping to stay on it until failure, but after reading the studies on Taxol as a maintenance chemo I understood his point (Taxol alone as maintenance chemo showed no increase in progression-free survival and a big increase in toxicity). Sounds like you're an outlier whose results don't conform to the studies. I'm still early into this, not even one year yet, so I'm sure that the fact that I still have other options that he thinks are safer & could have more benefit plays into it.
Fantastic news that it's working for you, congrats on the stable scan! Seems like you're one heckuva swimmer!
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Lulubee - great news on the stable scans! You’ve been dealing with this monster for 11 years. You give me hope! I’m just about to hit my 4 year cancerversary. I would love to still be around another 7 years and more!
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LoriCA, I am in the Taxol-only arm of a Phase 2 trial where it is used as maintenance chemo. (The other arm gets Taxol plus alisertib. Had I drawn that arm, I would have declined the trial. After multiple liver failures from bile duct mets four years ago, I have declared myself exempt from mystery drugs.) I am very interested to see the studies you refer to—can you point me to them? I’ve known several women here who were on low dose Taxol for extended periods; there’s a lady in the weekly Taxol thread who has been on it going on three years.
I am on weekly Taxol because I have longterm pericardial mets that suddenly went haywire and multiplied overnight 1.5 years ago and almost killed me. Had a liter of malignant fluid in a pericardial sac designed to hold about a tablespoon. That eliminated anything that works slowly (I had just started Ibrance which obviously was a bad idea with heart mets).With bone mets you’ve got a little time to experiment. The heart waits for nothing.
To answer your question, I started at a 90mg dose, began to develop neuropathy after a few months, and have been at 70mg ever since.
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Lulubee, Congratulations with the scan result. It is encouraging to read how you have dealt with this monster of a disease for years - and are now stable - fantastic :-) This brings hope.
Meja
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Lulabee.so happy you are enjoying that lovely word stable. One year ago I was diagnosed with bone mets. I thought I was never going to another Mother’s Day. Not only will I see it but I’ve a new grandson and one on the way. I’m off to cruise a river this week with my husband,sister and good friends. I’ve been stable since Feb. I’ve been thinking that they way I’ve gotten through this past year has been because of this site. So many brilliant women sharing their hopes and fears made me realize I’m never alone in this. Someone here always understands or has felt the same way on my good and bad days.
Thank you all. There are days I miss my mother..when I want to talk to her about what’s going on.. She’s been gone 20 years and I’ve grown old myself. And then I think of all the women here and how they give of themselves like a mother to her kids.
Lita,Patty, Leapfrog, Joyner, Z and so many more. Bless you all this weekend.
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lulubee, I don't blame you one bit for avoiding mystery drugs. I have nothing but respect and kudos for the women who are willing to give them a try and hopefully one day find a breakthrough for the rest of us, but not sure I could do it either.
Taxol was my first-line treatment, hence his caution I'm sure. I know there will be different considerations for second-line and subsequent treatments when we're willing to accept a little more risk. I was aware that there are clinical trials involving taxol (or other taxane) combined with another drug for maintenance in MBC, in which case one would be on Taxol for a longer time period than standard recommendations, but wasn't aware of anyone using it for maintenance outside of a trial.
September at DX my cancer was growing so fast that I was told I'd be lucky if I lived 60 days & to get my affairs in order. They thought taxol might give me back some use of my arm for QOL before I died! I shocked them and had an amazing response and that's why it scared me to have to give it up. I had absolutely no problem with neutropenia or neuropathy so I would think I would be a good candidate to continue with it. Full disclosure - I did however develop severe uncontrollable D after #11 in December, and when we switched to monthly dosage in February the D was every 20-30 minutes for 8 days straight, during which I couldn't even eat or drink a sip of water. After 3 months of round-the-clock D, I needed a break and asked to skip it in March, and it took a total of 5 weeks before it cleared up. I never completed what should've been my final dose. I asked to give it a try again last month it but he's not willing to risk it, but not because of the D, because of cumulative toxicity. If I fail H&P I'll ask about it again, although I'll probably be resistant to it by then. I'm not yet considered stable, so walking away from a drug that was working and that caused no neutropenia or neuropathy in me is frightening. He's concerned that if/when I fail a treatment, my cancer is so super-aggressive that we won't have much time at all to find something it will respond to. That's why I wanted to stay on taxol as long as possible.
Since you asked, here is some of the research I came across:
Maintenance Taxol® Does Not Improve Outcomes in Metastatic Breast Cancer
http://news.cancerconnect.com/maintenance-taxol-do...This is the full text of the trial study I believe: https://app.dimensions.ai/details/publication/pub....
In 2017 there were similar results from a trial using taxol for maintenance in women with metastatic ovarian cancer, showed no benefit.
Taxol plus gemcitabine for maintenance increases PFS 3.7 months, best results in women <50 and HR-, increased toxicity (this was after T+G first-line response, so none of this matched up for me - I had T only for first-line, am over 50 and HR+)
http://ascopubs.org/doi/10.1200/JCO.2012.45.2490 (states "the extension of full-dose chemotherapy after disease control may be considered an outdated concept and may not be feasible because of excessive toxicity and a negative impact on QoL.)
This is a more general article (not limited to breast cancer) discussing the inability to give taxanes indefinitely, the controversy over when to stop a drug that is still working, and where that is leading the research. Some interesting info in this one, there's a section on maintenance therapy in MBC on page 4 and it mentions the Italian study which reviewed 11 different trials of using chemo (not limited to taxanes) for maintenance in MBC and while there was a notable increase in PFS, there was zero increase in Overall Survival.
https://www.onclive.com/publications/obtn/2013/apr...
From the NCBI on the controversy over using chemo for maintenance in MBC
https://www.ncbi.nlm.nih.gov/pubmed/19046111
Your results show that there are some women who do well on taxol for an extended period of time, so I'm keeping your great results in my back pocket for future use!
Lori
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Lori -
A quick scan suggests most (all?) of the referenced trials that failed were trials of a high dose regime for a longer period. They were not low dose chemo trials. Low dose chemo has a different mode of action. This fact is very puzzling to me, still trying to understand it. It seems doctors are as well. But the low dose regime that Lulubee and I am doing is different in mode of action and outcomes.
>Z<
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Can someone explain for me the difference in the types of bone mets? In particular, what specifically are diffused mets and how do they differ from the other type? Is treatment the same? Sorry if these questions have been answered in the past.
Kathy
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Baywitch and everyone - I too would like to know the difference - this is the first time I have heard of different bone mets...
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Diffuse simply means spread out. I don’t think of diffuse as a *type* of bone metastasis, but rather as a modifier to specify that there are more than a few and they are in multiple locations.
Types are lytic vs blastic, and sclerotic. As I understand it, breast cancer bone mets are commonly lytic while prostate cancer bone mets tend to be blastic. Lytic lesions break down bone tissue and leave porous/weak spots and holes. I have heard various explanations of what sclerotic means and it is challenging to get a straight or useful answer, but my general sense is that sclerotic lesions have become inactive and in some instances the bone tissue is perhaps attempting to rebuild. I hope that’s right.
I am interested to know if other bone mets vets have come upon otherexplanations.
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Lulubee. So happy for your stable results!!! That’s just wonderful
Babs
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Lulubee-agree with your very eloquent explanation of bone mets. Hopefully in the future, the definition will be unnecessary in medical dictionaries....
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Lulubee...great news, so happy you're stable. I agree, I think your definition of bone mets is right. It concurs with some info my oncologist mentioned to me on Wednesday when I went to get my results....
And my scan results were bone disease is still stable and organs are still clear!! Doing the happy dance as 50sgirl always says. Eighteen months out and several scans behind me and I'm becoming confident that I have a reasonable quality of life to continue with.
You girls who are interested in tumour markers might like to know this. My oncologist explained why my tumour markers bounce up and down from 450 to 580 each month. He said it depends on which vein is used. If the phlebotomist uses a larger vein or takes up the blood from a larger vessel, there will be more tumour cells in the sample, while, if the vessel the blood is taken from is a smaller one, the opposite happens so that's why our tumour markers can be erratic. It made a lot of sense to me and I think it's another reason not to be too concerned with changes in tumour markers unless our oncologist is concerned.
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Leapfrog, thrilled to hear your good report!
About the tumor markers--that is very interesting. Of course, for those of us who always have port draws for our labs, it's always the same vein--jugular. However, my oncology nurse recently told me yet another interesting factoid about tumor markers. Mine rose a bit, and she quickly pointed out another number on my CBC which indicated I was quite dehydrated. (I wish I could remember which factor it was!) She explained that if we are hydrated on one set of labs and then dehydrated on the next, the markers can rise because there's less blood volume, which concentrates the markers. Makes total sense to me, and I do not know why I never thought of it before.
But golly. I'm finding it is really an effort to stay hydrated while on weekly chemo. That weekly shot of Benadryl and the occasional dose of Vicoprofen doesn't help, either.
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Leapfrog,
WOOHOO for your scan results. Yes, I am doing that happy dance for you. I love celebrating good news. That is interesting information you and Lulubee provided about tumor markers. I will remember that. My TMs just keep climbing and climbing in spite of stable scans. I guess my tumors are just having a hissy fit because they can't find any place to dig in and spread.
Eighteen months and stable, Woohoo! I hope you continue to have good scans for many, many years
Hugs and prayers from, Lynne
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Leapfrog, great news on stable disease - long may it continue and give you better and better quality of life!
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Cheers for Leapfrog on stable scan results!
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