Forgive me if this appears twice. I think the first post was eaten
Scan Tuesday. Oncologist called a few minutes ago. 2 new lesions since starting fulvestrant in mid Nov. Existing 3 stable. No involvement anywhere else. He suggested moving to chemo.
I requested a rescan in six weeks and to evaluate biopsy specimen from October for androgen receptors. He agreed.
I'm empty. Nothing works. Ibrance-6 mos, Everolimus-3 mos. Xeloda-6 mos. Verzenio-3mos. Now it looks like Faslodex is out.
IV taxol with new dosage is VERY doable and less exhausting than the oral meds.
Thank you. I'm not afraid of the drug, I just don't want to lose my hair. Also, IV chemo seems like a big pivot point. All the best to you, Andi
I’m sorry for this development. I appreciate how hollow you feel.
Have you looked at cold caps to inhibit hair loss? I did them in 2014 and they worked.
I've asked several at my clinic and no one can give me any encouragement. All the nurses say they've never seen them work. What system did you use? Is there more than one? I know Jo has had good luck with hers.
What's so funny is that I have shifty hair!! Why do I want to keep it???
Thank you for your response. I'm doing better today.😊 Andi
penguincoldcaps.com/?gclid=...
This is what I used. It’s come a long way in past 10 years. We had to supply our own cooling system etc: Now, I see them at MGH in Massachusetts when I go for bone density infusion.
I don’t know why you were told they don’t work after all this time. There was resistance when I tried it, but now? I don’t understand.
I will add it is not a cake walk. The caps are quite cold. They have to be replaced about every 40 minutes.
Just when I thought I could bear the cold, it would be time for replacement. It’s a day long process.
I was having chemo once a month for 4-5 months. If I had to do the chemo/cold caps more regularly, I wonder if I’d endure it.
I hated losing by hair on my first go round I’m 2004. Every time I looked in the mirror I was reminded of my predicament. So it was worth a try IMO.
I experienced thinning hair at my temples. I had to be careful how I brushed it. It looked a bit fly away but it worked.
Feel free to ask more questions.
I’m sorry you have to consider this. I’m sending a gentle hug.
Thank you! I'm not sure why my clinic is so negative. I get the impression they think it might require some additional effort on their part. I'm going to take a look at this. I hated being bald before!
A coworker used a cold cap. It did not work for her. We all love her shorter hair. She loves it too! Hope this helps
Dear Arisgram. Losing one's hair can be quite attractive. What takes away from your beauty is losing your eyelashes.
That, of course, is only my humble opinion.
You are ABSOLUTELY correct. I can fix the head thing but not the eyebrow/eyelash thing. However, it's pretty tough to come home and take off the wig and face the reality of all it means to lose your hair.
totally agree I think I will be in the same boat soon, scan on Monday. Liver mets stink!
My scan is Tuesday, so good luck to us both. Liver mets do suck. All mets suck. Feakin' cancer SUCKS!!!
amen
Aaaaaaamen!
You can say that again. I have radiology appt Monday re liver met. Trying to be positive!
Hi. How are you now? I found your post but it’s an old one. I am moving to I’ve chemo. Abraxane. I am very scared. Please share how are you now. Thank youBest,
Marina
What about a clinical trial? There are oral SERDS being tested now that work on women who have been though several treatments.
On breastcancer.org under “communities” and then under “stage 4 only” there is a whole thread on clinical trials and peoples experience. Skip to the end of all their posts and work backwards. It’s interesting to see what has worked well and what’s out there. Also it’s a forum like this so you can ask questions.
And of course ask your oncologist. He/she may have ideas too.
Everything I've looked at excludes me due to fulvestrant use. I'm hoping I'm androgen positive, so maybe there's something there. Maybe Y90.Thank you for reaching out. I'm sure something positive will come along. I hope you're staying warm! Andi
there was one at UCSF for an oral SERd that was specifically looking for women who HAD used faslodex. Although I am not sure where you are located... and yes, the androgen positive option looks promising in terms of trials.
I found this info on breastcancer.org"About the EMERALD study
The EMERALD study included 477 post-menopausal women and men diagnosed with metastatic, hormone receptor-positive, HER2-negative breast cancer that had grown while being treated with hormonal therapy and a CDK4/6 inhibitor.
Everyone in the study had received one or two previous hormonal therapy regimens, and no one had received chemotherapy for metastatic breast cancer.
The researchers randomly assigned the people to one of two treatments:
239 people received elacestrant
238 people received the standard of care, which was the researchers’ choice of either Faslodex or an aromatase inhibitor
After 12 months of follow-up, the researchers found that more people who received elacestrant were alive without the cancer growing than people who received the standard of care.
Progression-free survival rates were:
22.32% for people who took elacestrant
9.42% for people who received the standard of care
The researchers also looked at how well elacestrant worked against breast cancer with an ESR1 mutation. The ESR1 gene makes the estrogen receptor protein. When breast cancers develop an ESR1 mutation, the mutation changes the estrogen receptor and can make the cancer resistant to hormonal therapy.
Among people diagnosed with breast cancer that had an ESR1 mutation, progression-free survival rates were:
26.76% for people who took elacestrant
8.19% for people who received the standard of care
An early analysis suggested that people who took elacestrant had better overall survival than people who received the standard of care, but those results were not yet mature."
I ask myself how is it possible that breast cancer patients are on the same treatment for 2-3 years and the tumors are still there. I wonder what is this new "elacestrant "
Elacestrant is now awaiting release. Hopefully it will be out by summer. I was disqualified from the trial because of prior chemotherapy (Xeloda). I believe my doc would like me to move away from SERDs for the time being given the amount of disease I'm dealing with and the fact I progressed so rapidly on fulvestrant.
I have followed Elacestrant closely, and it looks very promising....and of course for me, no needles.
Thank you for your response.
You may be down but you are not out yet. You must be very disheartened right now, but I know you will pick yourself up. There are still options for you that could very well be your match and work for longer.Do what you need to now to get all the sad stuff out of your system.
We are with you
Clare x
Hey Clare. How are you? I think of you so often. 💕I'll get on with it until I don't. I knew the scan would be bad. I knew what he would recommend. It still takes a minute.
I hope you're having some fun these days. Sending you warm hugs from Alabama!Andi😊
Hi AndiIt’s nice to know we have friends thinking of us.
I think of you a lot at the moment, particularly when I have my work overalls on in the house!!
We are moving out of our house on 11th Feb. Having to stay at my Mother in law’s next door to our new house for a while. It’s going to be a squeeze but we will treat it as an adventure.
I have tweaked my back bringing down boxes from the attic. I have a weak back anyway, but trying to clear 3 houses has really put it to the test and it let me know it wasn’t happy. It’s much better now so I am back to it (until the next time).
Had scans last week and get results end of Jan.
You keep trucking my friend.
Clare x
Ooooooooo! Moving sucks! Add in a bad back and I can't imagine! But, you will have an adventure squeezing in to tight quarters at your MIL's. I'm sure there will be stories to tell 😁! It's fun to do things like that every decade or so. Most fun of all will be a new house to settle in to. I'm still driving Scott nuts with all my projects. It's great fun. Enjoy, but take it easy on your back. Much love, Andi
There will be many stories I am sure.We are only moving a couple of miles away - we could almost do it in a wheelbarrow!!
Hiring a van next weekend to get the furniture over to our storage container. Hope I get to drive!!
Glad you are keeping busy with your projects
Clare x
Clare wishing you good scan results!
I’m on Gemcetabine and Fulverstrant. You don’t lose your hair - very doable and my liver lesions are shrinking. Might be worth asking about?
Thank you!! I'm going to pull that up tonight and put it on the list to discuss. Thank you for this suggestion. I hope you continue to have good results!
Hi there. I'm trying to prepare for my upcoming consult and looking into gemcetabine. Is this an IV infusion or is there an oral option I haven't found? Have you previously done other IV drugs since your metastatic diagnosis? Thank you in advance for your help. Andi
Hi! This is my first I/v chemo post metastatic diagnosis. It is 1/2 hour infusion. I also have fulvestrant - two needles in my bottocks - each month. I was diagnosed metastatic 2016 - did letrozole, then added ibrance when it became available, then when progression occurred I was switched to Xeloda tablets. I was on them for a year and a half - then started gemcitabine in October 20. My latest scans show great reduction. I still work full time and look after my young family. I hope this helps! Please let me know what you decide to do xx
Thank you! I'm doing fulvestrant now. Maybe we could add gemcetabine and not cost me my hair!!
Ask about it! It’s not normally added to the protocol here but I want to keep my hair and keep working and not tell anyone about my diagnosis until I absolutely have to - so my oncologist suggested we try this! Let me know. I’m interested to hear what you do.
Yes, I will. Are you in the UK?
I’m in Australia!
Great feedback on your treatment. Thanks
Hi Hotlantaphatz. Scans show several liver Mets have now gone. No o progress in. Great combination of drugs for me. Hope you’re travelling ok? x
Cold capping does work. You still will lose hair but keep 40-50%. Dignicap is a good system but there are others. I would do IV chemo cause it works.
Thank you for responding. Unfortunately, I have so little natural hair a loss of 40-50% would leave me about 7 hairs!!! I will take a look at this system. Thank you!!
Hi Andi
I’m currently on my 3rd line of IV chemo. I’ve been on taxol, than Epirubicin & now Eribulin.
I’ve done the cold cap throughout & kept all of my hair. I find the cold cap very doable & it’s uncomfortable for the first 5 minutes. My tips are to take a paracetamol around 15 mins before the cap goes on & sip a hot coffee during the first 5 mins of the cap going on. Yes, it means a lot longer in the chair, but it’s been so important for me to keep my hair.
I’ve suffered very few side effects from
my chemo other than extreme fatigue at times.
My main challenge is to get something to work on my liver mets & I so hope Eribulin is working.
I’ve got a scan due soon & should get the results early February.
Very best wishes
Jo xx
Here's to good scan results.
Hey Jo, I've been checking your posts remembering you had a scan due soon. I have EVERYTHING crossed hoping that eribulin will do the trick. I feel like you and I are on similar paths.
I keep holding on to the fact you've kept your hair. My hair is so bad naturally, I'm thinking it's going to be quick to go and slow to return. I guess that's why I had a facelift as soon as I was diagnosed. I knew I wouldn't have hair to hide behind!
I'm pulling for you, Jo. Every positive vibe I have is coming your way. Let us know. Much love, Andi
It might be worth getting an opinion from an interventional radiologist for a Y-90. Your oncologist could recommend one. A couple of us on the board have undergone the procedure. My mets required two sessions, but so far very happy with results and no additional mets since the procedure. I completed my last one in August. It is done out patient without general anesthesia.
I'm PR/ER/HER POSBut not BRCA2. Diagnosed Ian 2019, stage 4.
This is my experience:
After several treatments I'm now on Kadcyla I have very few side effects and no hair loss.
I'm on my 30th cycle (3 weekly).
My mets were in lung, liver, bone and brain. Brain mets were dealt with by Gamma knife surgery. Latest scans have not identified any cancer in my body and of the brain mets (4) , 3 have disappeared and 9ne is significantly reduced in size
I expect the reduction to continue.
I'm sorry to hear your news, but I wish you success with your new treatment. Smart to request another scan.
Thank you, Marianne. I'm not sure my doc was too happy with my stall, but I kept reading how fulvestrant took a bit to work. I couldn't resolve in my head how they knew if the progression was on the increase or actually decreasing without a second scan. I guess we'll know in a month! Thank you for the encouragement.
Hi Arisram,I feel for you. I was diagnosed in 2019 and am on my fifth line of treatment which is Xeloda. I am on it for three months but now have to stop it due to the heart surgery. I have been always scared of IV chemo. I understand you.
But my oncologist said that a person can be on IV to stop progression and then go back on oral. Also your doctor never combined meds. I was on tamoxifen only and got a progression. I know many people are on two or three meds
Good luck
Marina
I hate to hear your coming off of Xeloda. My hands and feet were a mess, but otherwise not a bad drug for me. I wish it had worked longer than 3 months.Here's to a successful heart surgery. Please let us know how you are. Much love, Andi
Hi Andi,Thank you for your nice wishes and support.
Best wishes to you
Marina
Praying for successful heart procedure. Keep us updated as you recover!
Hi Mariootsi,Thank you very much for your nice wishes and such needed support
Best,
Marna
I have been there. Sorry to hear about your progression you still have oral meds like Xeloda, Affinitor ask your Onc those do not let your hair fall out they do have other side effects. When I did chemo first time I used cold cap and it saved my hair it thinned about 40% and then grew back. Now I’m on an IV that doesn’t respond to the cold cap plus you have to be willing to put up with it I found it uncomfortable but endured. I enjoyed hair for 3 more years. But I just bought a very nice wig! I have more serious concerns since I’m further down the path but you seem to still have options.
Cold caps do sound like a pain andv40% of my thin fine hair won't cover much, unfortunately. I've done xeloda and affinitor and verzenio and ibrance, so I'm running low on options. Maybe we'll find something. Best of luck to you. I hope your current therapy is a tremendous success. Please know, we're all in your corner! Much love, Andi
I am sorry to hear that you need to change treatment . Loosing your hair , eyelashes & brows is difficult . 1 year ago I started Paclitaxel, herceptin & perjeta and lost all of my hair . I had 12 treatments of the trio . I was finished Paclitaxel in May 2020 , my eye brows and lashes are back & I have just book my second hair appointment. I feel better than I did on some of the oral treatments .
I continue with every 3 week IV herceptin & perjeta . I take exemestane orally 1 a day . I am finding this very manageable.
If your oncologist proposes the same cocktail for you and you have any questions ask away . You can email me privately or post .
Luann
Thank you Luann and congratulations on the hair appointments. It's a BIG deal! I remember well! I'm making an appointment this week for microwaving and trying to find a theatrical makeup person who can help me create some eyelashes on a latex flap. I'll let you know how it goes!Continued success with your treatment! Thank you for your encouragement. Andi
I am interested in the lashes , I bought the magnetic lashes and drew on my brows . They have some really neat eye brow stencils now .
I will definitely let you know if I'm successful getting something to work. As I'm sure you know, fake lashes don't work well since they have nothing to rest on. Maybe, if I can make a thin enough latex flap to adhere to the lid, they'll stick!
I bought stencils last time but I could never get them even or the right color.
I lost every single strand of hair on my head and so had to resort to wigs. I was on the dance floor in my finery. It was a formal dinner dance. The wig flew off, I retrieved it, placed it back on my head and danced on. I was reminiscing recently with the boyfriend. He doesn't even remember the event.
I know without a doubt this is my issue and no one else's. Our people love us no matter what! We just have to keep dancing!
Dancing makes me happy but there has been very little of it these days. I was booked on a ship trip in April that was to have been with six dancing hosts . It was by the Black Sea and of course it has been cancelled. My worries are few compared to those by the Black Sea.
Oh Andi,
It breaks my heart that you are going through such a rough time and having to make decisions about your next treatment. My hair is getting worse and worse on Ibrance - thinning and drying out which makes it frizzy. I just ordered a wig. Hope I can figure out how to get it on and that it looks as good on me as it did on the pretty young model in the catalog. I am praying that you find the treatment that works for you very soon. Lots of hugs and blessings, Hannah
Thank you Hannah. What a sweet message! You are going to rock that wig! I remember getting to a point with mine, I could throw it on without even looking in the mirror! You hang in there with Ibrance as long as you can! It's a good one, comparatively 😘
If you have a good hair dresser they can also trim and thin out your wig to make it closer to your natural hair .
I got the wig yesterday. It's so different from my hair. I am going to have to play with it. It is curling ironed to flip out and I am going to have to curling iron it to flip under. It is brown with blond highlights and a lot more hair than I have. It is going to take some getting used too and it will need to be cut and thinned by a professional. Thanks for the advice. Blessings, Hannah
I am at the same point as you...I was on Capecitebine pills, but they didn't work for long. I have been lobbying my oncologist about metronomic dosing, so he suggested what I am on at the moment even though the UK SOC it is mostly given as an option after taxol I/V. So I am on 100mg of cyclophosphamide daily all the time (oral chemo - I also take letrazole daily) I feel great on it, my energy has come back, my hair and nails look better and I have few aches and pains. I am waiting for the results of my first 8 week scan...
Hello,I noticed you have the BRCA2 gene. I do too. After Ibrance+letrozole, then Everolimus+faslodex, I am now taking another form of targeted therapy called Talzenna (Talazoparib) that is for people with the BRCA2 gene.
I am on my third month but it seems to be working and I am tolerating it fairly well, I don't take any hormone blocker with it.
Could this be of any interest to you?
I hope it is useful.
Take care,
Faye
Hey Faye, I certainly have a PARP inhibitor on my list, but my onc says he prefers that after IV chemo. I'm not sure why, but I may push him on this. I'm glad to hear you're doing well. Here's to continued success! Andi
Hi Arisgran, you have my heartfelt concern and identification with your situation. I am BRCA1 and have been on everything that you mention. I am now on Ibrance, a PARP inhibitor, specifically initially for prr we people with Mets who are brca1 or 2 positive. So far it has reduced my tumors in l liver, femoral neck, and node near my pancreas. It took a couple of months to kick in and I felt pretty awful. Worse side effect for me was anemia and needing transfusions. Some friends found ice caps helpful. I, unfortunately, couldn’t tolerate the sensation of this heavy helmet on my head. Please try to have confidence in new drugs coming down the pike every day.
With warm regards,
SEIJJ
My apologies . I was on Ibrance and Anestrazole and it stopped working. I am now on Lymparza, a PARP inhibitor, originally used for women with brca 1 or 2 with ovarian cancer. Now they are using it for breast cancer. This is all so upsetting that it makes me say the wrong names of things. It took Lymparza a couple of months to kick in but l stuck with it and last couple of scans were much improved. I only hope it lasts and you can get to try it.My very best and warmest wishes to you.
Please let us know outcome of what your onc says.
Be well and safe.
Marilyn
That's ok Marilyn! I know what you mean. I was talking about painting my kitchen this morning and kept saying I was going to paint my chicken!! Good thing I'm the boss!!!I hate Lynparza was so difficult on you. Verzenio was like that to me. I literally just laid down on the floor in the clinic's waiting room. When I finally got in the exam room, my dic walked in and his first words were, "You look like SH#T!" He was right, and I felt worse. Good for you hanging in there.
Please let us know how your doing and I hope thus drug works for you for a long, long time. Thank you for telling me about your experience. All the best, Andi
Hi Andi. I’m sorry for the 2 new liver lesions that appeared on your scan. Just take heart in that everything else is stable. Are the 2 new lesions big and a cause of concern that you have to change meds? Of course I am not a doctor but if I am not mistaken, Sandra and someone else on this forum had slight progression but continued on their medication (Ibrance I think) and at the next scan, there was regression. I am continuously praying for you Andi🙏By the way, what are androgen receptors? ❤️Maria
Hey Maria! I tried to send you a private message, but it got eaten somehow!
The two new lesions are just over 1cm. I have an existing lesion of 3.5cm, one at 2cm, and a third at 1.3. The doctor feels like we are wading into the territory if needing to do something, but I'm running out of drugs. It's why I said let's give it another month.
How many and how large are your lesions? How much has Navelbine knocked them back. If he pushes on chemo, I'm going to ask for Navelbine.
There are new studies which have taken a look at androgen receptors (like estrogen and progesterone receptors) and inhibitors for the androgen have been formulated just like inhibitors for ER and PR. The studies are promising, and apparently being androgen receptor positive is fairly common. (Sandra, please correct me if I mis-spoke).
Stay well and I'll figure out what happened with my private messaging. Much love, Andi
Hi again Andi. I don’t really know how much the Navelbine has knocked back my liver lesions. I do know that my biggest liver lesion 3.5 cm I think has grown slightly bigger but the rest were stable. But my bone and lung tumors showed the greatest regression. Having said that, I’ve only been on Navelbine alone since December but my tumor markers went down in January. I would give Navelbine a try if you are going on chemo. For one thing, it’s oral and the capsules are tiny which is a plus for me since I have difficulty swallowing large pills. Also, I don’t suffer hair loss on it. The side effect most pronounced is fatigue. I don’t really feel tired, more like sleepy. But I agree with you in giving your current meds another month to work. Take care.
I am sorry you are going through this. I too have been on Capecitabine since August. I now have severe bloating due to narrowing of veins in the liver. I see my oncologist tomorrow to talk about other treatments. I am hoping the cracking feet gets better and that I have more energy.
Oh no! That's awful!! Please let us know what they do for you. I don't think there's much hand and foot improvement while you're taking cape. Mine cleared pretty quickly once I came off the drug though.
I hope you feel better soon. I'll be thinking of you and hope the next time we hear from you, things are better. Much love, Andi
I found cream on feet, wrap in clingfilm and then socks to keep that on - overnight, really improved my feet while on Cape.
Hi AndiGood luck with any new meds that you try . There has to be something out there that will work better for you. It must be so frustrating having to move meds many times in a short period but I’m sure your positivity overcomes your frustration reading your posts.
Reading the posts makes us realise how many different treatments are out there and gives us hope.
Hugs and positive vibes galore
Debra xxx
😍
Thanks again Sandra for your wise advice. If the Navelbine is working on the lung and bone tumors as well as the small liver tumors, what can you suggest be done for the big liver tumor? Surgery or radiation? I don’t know if Y90 is already available here in the Philippines.
Thanks Debra, I'm trying to be positive, but I'm pretty bitchy lately! Hopefully there's something. Maybe there isn't. All I can do is keep walking, right?
I hope your treatment is going well and every treatment works a good long time for you!!
Andi
Thanks very much Sandra. Yes I will wait for my next scan and in the meantime just watch my monthly bloodwork especially the liver enzymes. Your explanation on the Y90 procedure is very helpful and I don’t think I would go for it. I have my MRI brain scan on 9 Feb and a consult with my oncologist so I will ask him what he suggests.
Thank you so much, Sandra.I think what is driving my decision as much as anything is the poor response I've had to every drug I've tried these three years. It rips me up to read median PFS rates and realize i dont see anything close from those drugs. I have NO faith taxol will be any different. The promise of returning to targeted therapy after 3 to 6 months will not come to fruition, and I will just remain on IV until....and look sick the entire time.
I kind of feel like I will ask to exhaust all oral drugs (PARP inhibitor, navelbine or gemcetabine, Lasofoxifene or maybe an androgen inhibitor/modulator) and any IR available to me before finally taking the dive. I know the smart and simple answer is taxol, but I don't know that I fall into the general population of MBC patients for whom smart and simple means anything.
Am I completely off base? Andi
Hi Andi Just checking in to see how you are doing ? And what you had decided on for treatment ?
I hope your mood has improved 26 days of bitchiness is not good for anyone lol . ( according to your above post )
Luann
Hey Luann! Thanks for checking! 26 days of bitchiness is especially bad for my better half. Poor guy!
I'm kinda getting my feet back under me. I spoke with the radiation oncologist yesterday. He explained unless some systemic treatment beats back the 5 lesions I have, there is nothing to be done with radiation.....except possibly Y90 which he is pretty strongly opposed to until absolutely no other options exist.
I have another scan on the 1st in hopes the fulvestrant kicked in and started working. I can tell by the increasing discomfort in my side that that is not likely the case. Since I don't want to do Taxol, I am left with Lynparza. My medical oncologist is not thrilled with the choice but is understanding of my position. He also ordered testing of my last biopsy specimen for androgen receptors. If positive, I guess we will give androgen inhibitors a whirl after the Lynparza if we can't find a trial of some sort.
How are you doing? I hope the impending Spring brings some renewed joy to us all!
Andi
Hi Andi , I am doing well thank you . The Taxol and now continuing with the herceptin & perjeta seems to be keeping the liver Mets from growing and has shrunk them a little .my side effects are very minimal. Last scan showed no progression so I carry on .
I often think my poor husband needs a support group lol poor guy lives with a lot of moods . He rides the emotional roller coaster
I am looking forward to spring so much , -9 degrees today & snowing today ☹️.
Sending positive vibes your way for scan results on Tuesday .
Luann
I am sorry to hear about the new scan results. I hope the new treatment works better. Stay strong.
Thank you. The scan is actually Tuesday, but I'm pretty sure there's progression. I'll just keep walking like everyone else! We are a tough bunch!!
Hi. I found your post but it’s an old one. I am moving on in chemo now after Xeloda failed working. I am getting abraxane. How are you now. Please share. I am also desperate. Thank you. Best,
Marina
Hang tough! We understand your frustration! Thanks for sharing.
Moving dosage on Ibrance from 125mg to 100mg
New Skin lesions-- with metastatic breast cancer
I am new to MBC
New liver Mets😢
