Hi, so I’ve successfully avoided doing IV chemo since 2019. But due to bone mets I just had hip surgery and the pills I’ve been on are not working. I was told by the surgeon 2 days ago that I need systemic treatment asap or I’ll die.
I’m having a petscan tomorrow and depending on how it looks, I’ll either be doing Piqray + Faslodex or Taxol. And I know they really want me to do the Taxol.
I’ve had chemo pills a few months back (and it wasn’t fun) but this is new to me and I’m totally terrified. I have no idea how to handle this or what to do to prep.
I guess what I’m looking for is input on how to stay sane, how to help the sickness component, where to find wigs, eyebrows, eyelashes or any supportive tips you can share that have helped you. Thanks~
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Hi Verbena1: Sorry to hear this news. I would always get a 2nd opinion before doing Taxol. I had 12 chemo sessions of the red devil & the other cocktail in 2016 when I had my original cancer diagnosis. After all the chemo & radiation I received post Masectomy surgery throughout 2016, I was diagnosed with MBC in 2019 (I should have been diagnosed in 2018 when I was having unrelenting pain in my left quad, it turned out to be a left acetabular bone tumor).
I’ve seen that there are ways to tell if your body will respond well to traditional chemo ahead of time. If I were in your shoes, I would check into that. I wish I would have known about it at the time.
If you must have taxol, the cancer center will give you drugs to mitigate the symptoms while you are having chemo. Rest, drink lots of water, take something with you to focus on like sudoku, crossword puzzles, etc. Get the heated blankets they give you. It’s quite soothing. Wear the cold cap the cancer center may offer during chemo to minimize hair loss.
What type of cancer do you have & what drugs have you been on that didn’t work?
Bone Mets tend to grow slower than Mets in other parts of the body. You have time to get a 2nd opinion. I am stable now, after initial MBC diagnosis . I do many things in addition to Ibrance/Faslodex & Xgeva. Please go to my profile to see the details.
I wish you the best as you make the decisions that are best for you going forward.
Hi Verbena. I'm truly sorry that you are facing a new treatment change. Did you have a hip fracture or was it a planned surgery? Regardless don't listen to your orthopedic surgeons words about systemic treatment or die. Unless he's a dedicated oncology orthopedic surgeon he really isn't the best to make those statements. I had a pathological hip fracture in December of last year that required a total hip replacement. My surgeon was excellent and very straight forward as to what he saw in my hip region when he operated....riddled with cancer and as I knew him previously he even took pictures that he could show me. However he would never deem it in his realm to make statements around cancer treatments. I have a few questions after reading your message and looking at your bio. Firstly your surgeon should have ordered an Immunohistochemical staining for breast biomarkers from any bone or matter removed during the surgery. This should tell you whether that is still HER2+ which I think what your latest knowledge.
Next your 2nd line treatments are confusing as you appeared to be taking drugs for HER2+ but also Ibrance which is geared to HER2- ?
As I understand you previously took Fulvestrant as part of your 2nd line. If they then determined that your 2nd line failed and you moved onto your 3rd line, do they feel it would be reasonable to then use Fulvestrant again along with Piqray? I'm assuming you already know you have the pik3ca mutation that Piqray is geared to work with.
Taxol is a very good proven chemotherapy drug. It has been used with MBC since 1994. If this is the way you need to go and yes we all dread having to go the route of infusion chemotherapy for the first time, your cancer center should have many resources that can help you such as help finding a wig or use scarfs or head coverings which are very fashionable these days. My cancer center also offers classes on doing your makeup or brows, false lashes should you choose etc. Don't shy away from utilizing the resources available. With MBC going the chemotherapy route is not usually temporary as in earlier stages and it will be ongoing as long as we decide to take it. Preparation...both mentally and physically is very important.
I'm sure once you have your Pet scan your oncologist will be able to make a better treatment plan decision. I truly feel you have to trust the experts decisions...if they think the progression is getting aggressive then perhaps the chemotherapy is warranted even though it scares you stiff to begin that journey. Also you never mentioned what type of progression you are dealing with...sometimes minor progression can be dealt with a wait and see objective in my opinion if it is bone only progression. Take care.
I did have a hip fracture, as well as several lesions in the hip per my last petscan a couple of months ago…I was set for a hip replacement but we were able to do a pinning with cement instead. I had already had multiple sets of radiation to that hip in the past year or so, and so I sometimes wonder if that’s why the bone completely deteriorated on part of that hip.
I didn’t know about some of the testing you mentioned…it’s so frustrating not feeling like I always have all of the info. I’ve found treatments that I’m actually eligible for (Cryoblation being one of them) that I was never told about but will likely be getting soon also. I try to research but there are so many moving parts!
I’m hoping I won’t need actual chemo, but I told one of my oncologists that I’m open to it if the Petscan shows lots of progression.
Re: the Fulvestrant, that was my q too. I don’t want it. But apparently it works in conjunction with the Piqray…one of my last treatments (oral) involved the added re-use of Herceptin, which I had done in the past and it had stopped working. When I asked about it, I was told the same thing - that it works in combination with the oral medications. None of that really makes sense to me.
Thank you for all the wig and makeup input! I will really lean heavily on that, since all this time no matter how sick I’ve gotten, I’ve never looked like I have cancer. Weird thing to worry about I know, but I just don’t like looking like a cancer patient, just because I am one!
It definitely is not weird to want to try not to have to look like we are dying of cancer during treatmentI have had no nice eyebrows since doing Taxol in 2019.My hair all grew back fairly quickly..However,now I am doing Enhertu infusions and my hair and few brows are falling out again😞
I put eye makeup on even just around my husband of 46 yrs.😁
Wishing you God's healing and peace during it all.
Not weird at all to worry about your appearance regardless of our disease. I have not told anyone, not even my family about my disease so looking as healthy as possible is very important to me and yes going bald would be a giveaway to most that you are dealing with cancer. Do whatever makes you happy.
Definitely multiple radiation to specific bone areas weakens those bones tremendously. So there is a chance that your hip deterioration may actually have been caused by that. My radiation oncologist is very upfront with that and always said radiation should be reserved for pain control from bone mets when other options fail as unlike what some are told, there is a limit to how much radiation that can be done safely to bones. However don't get me wrong retreatment can be done, just not multiple times to the same location. It also depends on whether you receive a number of daily small GY sessions or a single typically 8 GY session...so it is complicated.
Yes Piqray is marketed by the manufacturer and was tested in clinical studies along side Fulvestrant...however personally I would still question receiving it again for those reasons alone if it failed you before. Anyway that's just me...I am very aggressive when it comes to my body.
Good luck with your PET scan today and please keep us updated. Take care.
I understand not wanting even people close to us knowing what is going on, I can definitely relate to that. A good portion of my close friends have no clue that I’m dealing with any of this.
The radiation to the hip was in different spots each time, but still I wonder if it was a primary cause in such rapid deterioration of the area and the fracture…
I have never had the Piqray but the Faslodex I have…I’ll definitely be asking lots of qs to my oncologist either way, once I find out what the treatment plan is. Thank you for the input and will update soon!
We have chatted re IV chemo, and like you I’ve never had it before. I’m actually getting my 3/3 infusion today of Taxol - it’s my 3rd cycle. Although we are not the same, it hasn’t been as bad as I had feared. Initially it’s a lot psychologically but I feel my body is coping ok. The worse is going to hospital every week for 3-4 hours as I have chosen to cold cap.
If your Dr is saying systematic treatment or die… that sounds like a no brainer to me. I do not have other issues that affect my health and you may so this might affect your decision, but ultimately if you give it a go and it helps - why not? We both had/have same fear re IV but it’s just another chemo that we can’t take orally - that’s what my BC nurse told me, and I was ‘oh yeah!’ And it’s a treatment that’s not new - I can’t tell you if it’s working yet, once I get my scan I’ll share my news. I have suffered with a bladder infection once, antibiotics sorted it and I’m trying to shake off a persistent cold but other than that I’m functioning!
Good luck with whatever choice you make x btw…. I still look like me
hi Ntash01, thanks for that info…and I’m really happy to hear that it’s not going badly for you. Yes please keep us posted on how it goes for you. I hadn’t thought about it being similar to the chemo pills (which I found really rough)…hoping if I do get the taxol that it won’t be too bad!
I had Abraxane as my second line and although I didn’t want to lose my hair that was basically the only problem I had. Apart from the time taken for the infusion as I had to see the oncologist first and get approval to have the treatment then once I was in the IV daycare room I had to go through all the usual stuff like heart rate and blood pressure and the placement of the cannula. So before I’d even started the infusion I’d been at the hospital for at least an hour and sometimes longer. The hospital hands out anti nausea medication for free and thermometers too as we were required to take our temperature every morning. That was the pharmacy policy not the doctors but I did it anyway.
I can’t recall being nauseous at all but I might have been once or twice. A wig cost me $500 and some people didn’t realise it was a wig. My hair looked much better than normal!
The plan was to have nine rounds which was two weeks on one week off and I did that although towards the end I had mild tingling in my feet. I still have mild numbness but it’s not bad.
I had Abraxane because of rapid progression of bone Mets up my spine and into my skull. And I had radiation. That was in 2015/16 and I’ve been on Exemestane ever since. I don’t think that would be the case if I hadn’t had Abraxane. It was considered aggressive treatment by people I shared it with online with but my cancer was behaving aggressively too. If you need IV chemotherapy then I’d say that from my experience it’s nothing to worry about.
Wow it’s nice to hear that the hair was the main issue for you…and it sounds like you aced it with the wig you got, haha. I’ve been looking at wigs and some are pricey but I really would prefer not to have any that look like a wig~
The petscan is this am so by tomorrow or so I should know what treatment I’ll be getting.
hi Verbena1, normally Piqray is taken orally (in pill form) and is not chemo, it’s a “biologic” — and you don’t lose your hair. So if you end up trying that next, it will probably feel more familiar to you as an oral treatment. It’s always paired with Fulvestrant. I’ve been on that combo for the last 3 months and tolerated it well.
It sounds like you’ve already been on some IV-based treatments (you didn’t lose your hair on Enhertu? If not that’s good to know!). And you’ve already been on oral chemo. So maybe the main thing that may be scary is the prospect of losing your hair & other side effects if you take Taxol. That drug has been around so long they know how to manage the side effects well, including giving anti-nausea meds as part of the infusion. When I had it in 2014 with my first round of breast cancer, I had hair loss and it affected my fingernails & toenails. I didn’t enjoy it but got through it ok.
I got a high-quality wig that looked totally natural and was actually more attractive and easier to manage than my real hair! In the morning you just plop it on your head and are ready to go! My US insurance paid for it. The worst part was the long awkward stage while the hair grows back. But it’s all manageable.
Whatever your next phase of treatment brings, I’m certain you’ll be able to navigate it. In some ways the fear and anticipation may be the worst part. 💕
Thank you for the vote of confidence on that, LDR1! And I didn’t know that Piqray was always paired with the Faslodex…I’m hoping that will be the route I go next but if not, it really helps to hear that people have done ok on it. Especially since it’s been around so long!
Good Morning? When you have IV chemo, usually they will have a wig magazine there called TLC Wigs. If not look it up on line. They have different things in there you can use. I got a double mastectomy right away. My life's more important than my boobs. But I did get implants at the same time.Ask the Dr if you will lose your hair? Not everyone does. Some places have ice caps to help preserve it.
If they say you are going to lose it, cut it short before you start. It will be less of a shock .
I am HER2- ER/PR+
So your chemo may be different than mine.
I had 6 rounds, 3 different types. Took a while to get done. Bring a bag with stuff to do. And snacks. They'll probably have snacks and stuff to drink there.
Remember you are a warrior and will fight to the end.
Trust me, the strength will show up . Bring a journal. Right everything down, what drugs you'll be getting, your feelings and something you are grateful for.
I brought someone with me the first couple times and then decided I could take myself.
Keep your chin up. You did nothing to deserve this. Try to avoid stress.
I had 11 rounds of taxol but had to discontinue due to neuropathy. The drug is very effective and hair will regrow. I agree with others to do a power move and cut your hair in a short style you might not have been willing to try before because it is less stressful when it falls out. Something about cutting my waist length hair made me feel a bit more in control and bolstered my confidence to proceed. Be careful with the neuropathy side effects and report them right away-they can worsen AFTER the taxol treatments end. The single biggest thing that helped me during infusion was to walk and move even if it was just to the end of the drive each day. Remember that these drugs will reach every cell in your body, and then you want to flush them the heck out with your circulatory system. The longer taxol is in contact with peripheral nerve cells the more likely it is that damage can be permanent. You can put hands and feet in ice water during infusion to reduce the effects just like cold capping. On the plus side, taxol works well and they are good at helping to control nausea with meds.
It seems like I have had it all in terms of traditional chemo and radiation followed by hormone therapy. As far as chemo is considered, I would suggest you wear comfy clothes and bring a bag of distractions. I'm not an avid reader but I would journal and write thank you notes during my time in the chair. A crossword puzzle, Sudoku or book are excellent diversions. You may simply want to nap. Nurses will give you a warm blanket and snacks are usually circulated by a volunteer. I take a daily Claritin to help with bone pain but I have found being hydrated helps tremendously. A bag of peppermints can help with the metallic taste. I was fortunate to have a greaat resource with the local Cancer Services. I purchased a wig but found that they had better options - and they were FREE! My hospital also had Feel Good Fridays and Make Up classes that I was able to attend free of charge. I was quite fortunate to have local resources and support. Good luck and God bless.
Of course everyone is different . The first one was the hardest for me. I was fine for three days. Even got a little cocky and prepared Thanksgiving dinner. The fourth day it kicks in. Drink lots of water, take your nausea pills regularly as they really help. Get some Depends . They’ll save you a lot of clean up. As far as wigs. I didn’t like wearing them so said the hell with it and got sone cute caps. I did have my eyebrows tattooed. Didn’t realize how important they are. Hated not having any taste. Everything came back though. Try to stay positive. You’ll get through it. God Bless ❤️🙏
Sorry to hear, chemo is not fun, For me it was worth it because my liver met now is not detectable on imaging .
Things I wish I had known
1. I wish I had known about cold caps to save my hair. Cold caps work well with some chemo and not well with others. There are two main types - if you look up PAXMAN the website allows you to plug in your treatment and it will give, based on their research, the chance of keeping your hair. Taxol had very good results, but others not so. Not every centre offers PAXMAN but the alternative is cold caps you do with dry ice in a cooler - look both up. Some Oncologists may dissuade you because the cooling effect is what stops chemo from getting to scalp. It is also very expensive - I wish someone had told me so I could have considered it and discussed it. Penguin cold caps is the other company I am familiar with - the one where you use a cooler with dry ice and rotate cooling caps - lots online about both these methods
2 . Wigs - a synthetic wig is recommended when hair loss is temporary. For permanent alopecia a real hair wig is recommended but much more expensive. Wigs are hot. My synthetic wig cost about $800 CDN. A wig salon will tell you all your options, proper care etc. I also got a "halo wig" - so nothing on scalp just hair affixed to a band. You need to wear it with a hat. It was perfect in summer when I could wear some cute summer hats, in winter I wore a cap I purchased at the wig salon. I wore my halo wig way more that my other and it was cheap - under $100. I admire woman that can rock the bald head - that is not me. Do what is right for you. For just around the house , I bought a few plain bamboo caps - they were cool to wear unlike some of the knit wear caps. The bamboo caps were also plain - the big knit knot or flower are not me
3. Everyone feels different even with the same chemo. I was on TAXOL for 12 weeks and for first 3 weeks I felt nothing - and thought "well this is a walk in the park" . However after 3 weeks the cumulative effects made be tired, stomach pains, severe constipation peppered with severe diarrhea. Don't let yourself get constipated - it caused me painful hemorrhoids. Your team will make suggestions - for me what worked was Restorax and Senokot as needed. For stomach pains a warmed up magic bag was comforting. A woman I met at the infusion centre worked the entire time during 12 weeks of TAXOL chemo she WFH and had very few side effects. There is no way I could worked- doesn't mean I am weaker, it just means we experienced diff side effects. But overall, for me, TAXOL was really not that bad
4. Daily mouth rinse with BIOTINE mouthwash which is moisturizing not drying like others.
5. Ask Onc for a sleeping med - if you are given Prednisone premed, that plus the chemo would have kept me awake. Nothing wrong with taking something for sleep - I am no longer on anything. If you don't need it - you don't have to use it.
6. Try to walk or move daily - if only short walk.
7 Eat what you want and what you can tolerate. Can't stand when people say "you must eat healthy during chemo" sure - that would be ideal but simply not always realistic. I was living on chicken noodle soup and cheezies because that is all I could take.
8. If people ask "let me know if there is anything I can do" tell them. Tell them you need your house cleaned, laundry done, drive to infusion centre - or whatever- just tell them
I know this is long winded - hope it answers some of your questions.
Not long winded at all, this is absolute gold to me so thank you! I’m already writing stuff down that you said and adding it to my list…
I’m not going to be rocking the bald thing either, not my style at all, although I admire the beautiful brave women who do it.
Sounds like there are a lot of great wig and hair piece type options, I’m happy to hear that. I had no idea where to start. I guess by tomorrow I’ll know for sure what the plan will be. If it’s taxol and the PaxMan doesn’t look like an option I’ll be able to do, I’m shaving it off pronto! Thanks again for the excellent tips 🌸
Even if you order a wig online (I think it is cheaper) - go to a wig salon first to get fitted discuss different options, lace front etc, I have heard a few people recommend Wigs by Pattis Pearls wigsbypattispearls.com/ for online wigs, but never used them myself so this is not a recommendation, just an option
My nonprofit, founded while I was a volunteer at SHARE, Annie Appleseed Project, focuses on natural strategies to REDUCE treatment toxicities. Check our website for downloadable PDF. annieappleseedproject.org
So the update is I’m starting the taxol chemo on Monday…no avoiding it. I’m sad but I’ll do it…the petscan shows too much activity and lesions and I’m having a lot of new pain on the hip, so they want to get ahead of it and prevent any more fractures if possible.
They’re also adding Herceptin and Tarjeta (forgot the name) to the combination.
Thank you all for the helpful input, I’ll be re-reading the tips and prepping the best I can. 🌸
Thank you for your update. I'm sorry that you didn't get the news you wanted...however I think deep down you were expecting it. I agree with your oncology team that trying to get ahead of things is often the way to go. Perjeta and Herceptin are a proven combo and are both targeted therapies that are usually teamed up with a chemotherapy drug such as Taxol. There was definitely lots of info provided by the wonderful ladies here to help you prepare physically for the journey. I want to wish you all the best as you begin your next line of treatment. Take care.
Hi, thank you for asking…yes I started the Taxotere 5 days ago and the first 3 days went pretty well - (at least until the steroids wore off)…
No nausea thankfully but the past 3 days I’ve had a lot of pain…feels like someone is alternatively beating me with a stick or making tiny stab wounds all over my body, most notably in the tumor areas so I’m hoping maybe that’s in some way a good thing.
I’m sleeping a good amount and trying to keep hydrated (and satiated) but I would say it hasn’t been the best of times!
We’ll see how the next infusion goes in 2 weeks, and how it builds up in my body. Thanks again, fingers x’d it evens out a bit more soon 🌼🌼
Thanks for the update and I'm glad you have the first infusion under your belt. It is extremely common unfortunately to experience lower back or side pain, muscle pain, cramps, or stiffness that start 2-3 days after the infusion. It should settle down. Of course if it doesn't please let your oncology team know. They may be able to prescribe something to help if the pain is unbearable. Let's hope that this is the treatment that kicks your cancer back again. Take care.
wow I am sorry you didn’t get the news you were holding out. But after one of those meetings and we usually know deep in our gut when bigs changes are coming. I also mount a little pity party - one evening to grieve. It is healthy for me and then I can say…“knowledge is power and here we go!!”
There is so much excellent information. I am going to add some of the things I have learnt with A/C and now starting Enhertu.
I purchased very expensive Shampoo but it has last me 2 years…
And it really helps slow down the thinning and you still use it even after total loss. It is a kit and has other conditioners in the kit too.
I maintained a wig for a year and a bit, but after an insanely hot hot summer I went bald. It was liberating! I had purchased multiple wigs at different from Amazon so I could simulate hair growth . I was dedicated to the feeling of normal! My favourite brand gnimenil and udu. I have curly hair so I went for curly, 2 toned or ombré wigs.
For my eyebrows I got 2 colours for a more realistic look. I didn’t have enough time to prep micro blading or tattoo.
I used eye liner for my eyelashes that was enough to give me colour, but I wear glasses.
I avoid contacts, eyes too dry but I use eye drops.
For my mouth, I brushed with baking Soda at least once a day, other times I dry brushed. I also used biotene toothpaste.
Take your anti nausea meds regular. It is easier to manage than recovering from vomit.
I fast the day of treatment to 2 hours post treatment, and then not too fatty.
Eating - root beer doesn’t change flavour. I have had plenty of root beer floats for breakfast simply because it stayed! I also have about 1/2bounce of apricot brandy before dinner to aid with digestion.
Eat new things - your taste buds have no expectations. That came from my dietitian. That was the absolute best advise! Don’t worry about eating healthy, my oncologist said define healthy as what stays with you!
I also started AG1 athletic greens, the more healthy your gut the less extreme the side effects. There was a California based study happening on that. Don’t take it for 4 days before bloodwork the biotin will screw with your tumour markers.
Neuropathy is where I am still struggling. It is still bad withEnhertu, I have added a few things and I change up the cream, voltaran Extra strength, THC cooling cream (by far my favourite), get your feet waxed! I also use a Dr. How foot massage and a manual foot massager. I try daily.
I now take Nervive daily and vitamin B Complex. Can’t get enough Vit. B .
I also used ice mitts and booties - regularly for A/C and just pulled them out again for 3rd treatment of Enhertu. I had forgotten about them but another post reminded me, so much better for me. I got mine from Amazon. I don’t cold cap - gives me brain freeze, but do suck on ice chips for mouth sore!
Hope those tips add to your arsenal of coping with side effects.
Best of luck just step through the door - do it once and it gets easier!
I just wanted to say that most of us have had many treatments like yourself and if the chemo will hopefully bring your progression down and stomp it out, I too will do it. If my current treatment does not work and markers are still rising, then I am all for it. Mine are at 2130 now after a year of taking so many that failed and really brought me to a sad point. I agree with all the really good advice above too. I saved my wig from 2016 and I did actually cut my hair short and therefore, bought a wig with short hair. However, I was so mad that cancer took my hair, that since 2017 when it starting growing back, I only trimmed it. It is now down to my backside. I said I would let it grow. I might need to look for a wig that has longer hair now. 2 things - I too fasted before and after and never had nausea. I only listened to music during my treatment and closed my eyes and relaxed because I did not want to look at all of us being treated. It was just a real downer for me. We are all very much here for you, so be strong. Blessings
Wonderful advice here. I would only add that there's a catalog wig company that carries different brands and grades of wigs--most inexpensive--Paula Young. I have 2 of them that I got when I went on infused chemo, but never needed, since my hair only thinned a bit. I put a gel or a wax brow color on my poor eyebrows daily though--they're really thin now. And I just bought some mascara to cure the "rimless eyes" look ;P
The thing that improved my IV chemo the most was the little port I had installed in my upper chest. Also, the nurses always gave us warmed blankets and some apple juice to drink. The blankets helped so much that I asked for a home blanket warmer for Xmas and I love it.
Best of luck to you. I actually enjoyed going in for infusions of chemo--since my immune system is shot and also the crime rate in my city is horrific right now, I don't go out much, so it was a chance to be in a place where other people like me were also being treated. We sometimes chatted and other times just managed a smile, but it was 'social' and made me feel less lonely.
Now, I've been switched to Xyloda (pills) and I just loathe it, but it seems to be working...but I miss my hours in the chemo center, believe it or not...
I love your upbeat take on things…and happy to know you’ve had some positive experiences throughout your ordeal. Ohh the dreaded Xeloda! I do not miss that at all, although I know it’s effective.
I don’t have a port, but people really seem to have a good experience with them. I appreciate you putting in some of your journey! 🌸
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