Hi everyone! Just wanted to share some good news for a change. I hope it encourages others who may be needing to start on Taxol or Abraxane. I started Abraxane in February after my early January scan showed a lot more liver metastases. I also have lots of bone mets. I had been on Xeloda for 7 months before that.
I just got my CA 15-3 results and after four Abraxane infusions the number dropped from 383 to 134! Liver enzymes and Billirubin are back to normal too. I'm beyond thrilled....who needs hair? Well, hair would be nice but results like this make my "ostrich scalp look" worth it. (I thought I'd end up with a shiny smooth head, nobody told me about the tough white hairs hanging on so long!)
At the same time I started Abraxane I also began Mistletoe injections. This is a common complementary cancer therapy in Germany and I think it is really helping keep my energy and white blood counts up. Here's a link to the National Cancer Institute page about it if you're interested. In the U.S. many naturopathic oncologists offer it.
Praying that we all stay safe and don't go crazy at home.
Patty
PS - the photo is me with my new wig "Lucy". We're still working on our relationship...she's hotter than I expected and wants to hold onto me a little too tightly! The painting behind it is called "If Your Hair Falls Out, Keep Dancing"...I think there's a book by that name too. It was at the wig shop.
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Thanks! It's a bit shinier and blonder than I realized in the shop but what the heck. The first time I wore it in a store I kept waiting for people to look at me like I had a raccoon on my head, but nobody seemed to notice!
Oh I'm glad! I hope you have an easy time with side effects. And don't worry if your cancer marker doesn't drop right away. Mine only dropped a few points after two infusions but my oncologist said to wait at least a month to see the drop and she was right!
I was feeling really rubbish because after 90mn I had to give up the cold cap... After 18 months and 5 treatments it was the only time I felt I couldn't take it... Felt so useless... It wasn't so much about the hair loss , it was about the " looking sick" ... Having been on various oral treatment I have managed to keep business as usual, working full time and preserving my younger kids ... Taxol felt like the beginning of the end... So again thanks for sharing.
Oh man, if you were able to keep a cold cap on for 90 minutes you are a true warrior! I didn't even try. I won't deny that it's freaky and sad to lose hair, especially when it first happens. Honestly though, now that it's been a few weeks I'm really used to it. I mostly hang out in cute little caps, especially since I'm not going anywhere these days. My younger grandkids like the caps but also had fun meeting "Lucy". I recommend getting a wig that you like and is comfy...but wait till/if you lose your hair to get the best fit. And I was told to NOT shave the hair that was left, just trim it short and let it come out naturally to avoid follicle infections. I went from long gray hair to Lucy and may even look a little younger than I did when I was naturally gray! The important thing is that the Taxol can kick back the cancer.
I do the subcutaneous injections myself after my doctor showed me how. I do them about twice a week but it varies because I wait until the previous reaction (small red area) is completely gone. It would be hard to schedule having them done at an office. I get the mistletoe from a pharmacy that mails it to me, but only with a doctor’s order.
I also did taxol lost my hair. At first I bought wigs the color I had my hair. Ned ash with light highlights. No I try darker colors like my hair was when I was younger and I like it. So I buy my wigs when on sale and try curly straight long, bobs and having fun being who I want.my markers went down good on taxol but then I got sick. Now I am on Gemzar and my hair is still coming back in. Maybe I won’t lose again. Hope my markers start dropping soon.
So have some fun in the wig world. It is easier than real hair to care for.
Wow! Nobody would guess you even had cancer! I got a wig when I still had hair but was afraid I was going to lose it all. I haven’t worn it once because my hair stopped falling out, but you give me great hopes that I’ll look good whenever I get to a treatment that makes me lose my hair. With hair the wig was too hot to wear. I hope your treatment keeps working and you keep looking that good.
I’m a little confused though as I thought CA 15-3’s safe range was between 0-30.
I love Lucy ! I also have a friend with the old-fashioned name Daisy, who’s hot and clingy as well. 😊 Not taking her out much these days as completely quarantined except for daily walks in remote places where I’m not seen.
Thanks so much for the info on Mistletoe injections. I’m looking forward to reading about it.
Enjoy your weekend with this fabulous news. Hope you’re celebrating!
Hi K! It's true the "normal" range for CA15-3 is 0-32, but, at least in this cancer world, good news is more relative. My CA 15-3 was over 900 when I was first diagnosed in 2017...dropped as low as 18 on Letrozole...bumped up over 500 again when the Ibrance didn't work for me, and started gradually going up in the last months I was on Xeloda. With all the metastases I have, getting an almost 200 point drop is thrilling. I suspect a lot of us "bounce" in the 100's or 300's....my oncologist says what matters is the stability. When there is a sudden, sharp increase we need to do something different. In my case the CA 15-3 has been a very accurate marker of what's going on inside, but I know it isn't for a lot of us here.
As for Mistletoe, here's another article that references an ongoing study at Johns Hopkins.
My new oncologist, who is head of department, and her colleagues don’t discuss these with their patients whereas my previous onc at a different hospital did at every visit. Strange how doctors so vary in their treatments.
I found out what mine were from her nurse practitioner who felt I had a right to know. I’d no idea they could be so high in the 100s as high for me was 75 and I congratulate you again on the big drop! Please know I wasn’t trying to diminish your excitement but simply uninformed.
I live in Northern California and belong to the Kaiser Permanente medical group. Sadly they do not have an integrative onco on staff and though I can see one in SF, he’s very well known and expensive. I’m trying to see if there’s anyone else in the area with whom I might be able to consult who won’t charge $500.
All best you to you and Lucy. Very pretty “do” and so natural!
There's a Naturopathic college here in Portland so we're spoiled...ND's on every block practically. I checked online for ND oncologists and you are right, just one in SF. Mine here does telemedicine now; I'll ask him if he's licensed nationally (he used to work at Cancer Centers of America in Chicago) and if he could possible do a telemedicine consultation. I find his suggestions regarding supplements and diet so helpful with side effects.
And yes, it is weird how differently oncologists work in different hospitals. But we warriors are all different too....I really want to know my labs and I do a lot of research before starting a new med, but I know others are more comfortable leaving it up to the doctors.
Yes, you are spoiled. 😊 We love OR and will miss this year’s Shakespeare Festival! Have also enjoyed the coast (Gold Beach) but never been to Portland. On the list.
Thanks so much for this and info re veggie washing.
I’d be very interested in knowing if a telemedicine consultation could be possible. Many thanks for investigating.
A telemedicine consult IS possible. My ND Oncologist is Eliot Edwards at Sage Cancer Care. He replied that he is not licensed in CA so he cannot bill insurance or write prescriptions there, but his cash rates are quite reasonable and honestly I've never used him for prescriptions anyway. I find him very helpful recommending supplements to help with side effects, to give me more info about treatment options offered by my regular oncologist, and to help with dietary changes. He would be able to do all that for you. I don't know if he can offer you mistletoe. At any rate it won't cost you to call him and see if he can help and ask his rates. Here's the link to Sage and his bio:
You look beautiful, Patty! Thanks for sharing such happy news! With the world so crazy right now—what a day brightener!! 🌞❤️ God bless you and keep you strong!!
And thanks for tip about mistletoe! Does it only work if you’re kissed during injection? 😂 Pardon my attempt at lame humor!
That's cute. Your humour is not lame. At least not to me. I take a chuckle wherever I can get it. (except in bad taste). Mistletoe sounds interesting. Will follow up.
No such thing as lame humor, my husband said the same thing! Maybe I should hang my box of Mistletoe vials over a doorway and get double use out of it!
I love Lucy! She looks great. Thought it was your natural hair that is really beautiful. Thank you for your post. I have extensive bone and liver mets and started Xeloda with Keytruda three weeks ago. I had terrible side effects until we lowered the Xeloda dose. I’m glad to know there is another drug for me to try that may be effective after this one. Hope your results continue to improve!
Thanks for posting! I'm glad your Xeloda dose got lowered. I was on 1300mg am and pm, 7 days on, 7 days off. My oncologist worked at Sloane Kettering where they used that schedule. If I had stayed on it for 14 days straight I think I would have had a lot more foot issues. I found briefly soaking my feet in ice water when they felt hot helped, and of course I used Udderly Smooth (be sure to get "Extra Care 10" with the Urea ingredient. Is Keytruda an immunotherapy? My cancer is ER+, HER2 negative so I don't think that's an option for me. But yes, there are many other options out there. Stay hopeful!
I'm on 14 days on 7 days off. Right now I'm okay with that but I started with 2000 mg in the morning and 2000 mg at night and that dose was too high. I had chest and jaw pains and extreme dizziness and nausea. No hand and foot syndrome though, but I am using Udderly Smooth with Urea every night. The onc lowered it to 1500/1500 and that seems a lot better. We shall see how round two goes. I'm glad to know I have the 7 days on 7 days off option if this schedule proves too much. Keytruda is an immunotherapy. It is not standard of care for breast cancer but my onc is hoping it will extend the effectiveness of the Xeloda. Merck Pharma is paying for the drug for me. There is a way to apply for it online and the doctor has to also apply for it with you. Your insurance company has to turn you down for it so that Merck will pay for the drug. Its a long process and it caused me to go without treatment for 3 months and I had significant progression in the mean time so am very hopeful this treatment knocks everything back. I have had triple negative mets (in my skin) but my liver mets are now 99% ER/PR positive. They were ER+/PR-. They change over time. Onc says Xeloda works for both TNC and ER+ so that is why he is using it for me.
Hoping with you that the Xeloda-Keytruda combo is a winning one. I may ask my oncologist again about Keytruda. Did you have your liver mets biopsied? I've hesitated to do that, but maybe I should (when it's safe to have elective procedures again) just to be sure my cancer type hasn't changed. It's great that Merck is paying for the drug for you.
Regarding hand/foot syndrome, mine didn't start until several weeks into Xeloda, and got worse when I was in a warmer climate. Be religious now about keeping your feet and hands moisturized and out of hot water (baths, sinks). If you live with someone, let THEM do the dishes! It can really help down the line.
When I went on Xeloda I chose it over other options because it had a good track record against liver mets. Hope it knocks yours out!
Yes, I had my liver biopsies in December. I had it done in Feb 2018 also. My subtypes in my liver did change from all the treatment. Thank you on the points around HF issues. I definitely don’t want that! Take care!
I’m fairly new to MBC and to this site . It’s so nice to read such encouraging news . You look amazing and I didn’t even know you were wearing hair ! You look beautiful with the smile of a warrior. Thank you so much for sharing. Please be safe during this trying global crisis on top of our own existing challenges. I love the name “Macromom” !
Hi Patricia! I'm sorry you have MBC but glad you found us. I remember the fog and exhaustion when I was first diagnosed in 2017...was so glad to find this site.
"Macromom" comes from Macrobiotics. I love whole foods cooking and was teaching it for a while. I'm not strictly Macrobiotic anymore but I do cook with a lot of whole grains, beans and tons of veggies. We're lucky to live in Oregon with a year around growing season. Today we're going to pick up fresh produce at a nearby farm, first time this year.
You stay safe too. Our millennial kids are like the safety cops..."you didn't go out, did you?" It's a funny role reversal for us baby boomers, but sweet too.
Take care and feel free to post whenever you have questions or concerns. As you can see, there are many, many loving, supportive and knowledgeable folks here!
My daughter is a night shift ER RN at the Trauma Level hospital here and has three kiddos that all live with us as she goes through a divorce. Yes she tells “ her Dad and I “ we can’t go out to the grocery store !! It is a huge role reversal. I worry about all the front line workers. Already one nurse is in critical condition on a ventilator in a nearby hospital. She and my daughter belonged to a hiking group and very fit ! So it’s just shocking and heartbreaking .
I believe in good nutrition too! In California we have usually have access to good vegetables and fruits .. it will be warming to 80 degrees next week. No one really knows how this virus lives in warmer temps so hopefully it will slow it down until the next season and maybe we will be better prepared.
Virtual hugs to the wonderful team of fighters on this site. I love the support and knowledge everyone is so willing to share . It’s still all a great shock to me and I find myself fluctuating between feeling overwhelmed and overcome with emotion to no emotion at all.
I will go to my bone scan next week alone as instructed due to COVID 19 . I’m usually very independent so it’s ok... Hoping for no progression in my ribs .. I have been having severe pain in my right hip and leg. Hopefully my spine is ok.
Again thank you for posting such good news. Gives me hope and information.
Thank you for sharing and I wish you and your daughter the best of health in the future. I am a bit envious that you have such nice weather but soon we will have warmer days too. I just have to be patient. I just want to feel energetic enough to work in my garden. I find that my drugs make me a bit lethargic so I use that time to read and spend time on my Wave Mat. But it makes me feel a bit guilty as I can see weeds sprouting up everywhere. We live on acreage so the weeds and weed seeds dance around and enjoy the freedom to grow and spread around. They probably have lots of fun when they see me peering out the window. So I am looking forward to getting out into nature soon. All the best. Hugs Marlene
I love how you said weed seeds dancing around ! I love to garden to put seriously have to limit it to a few pots now .. it’s shocks me how easily fatigued I get. Some weeds actually produce such beautiful flowers ... nature is amazing 😉
Now I see the origin of “MacroMom”, I have another question.
I’m cleaning all foods brought to us by neighbors or family doing our shopping. Unpacking very carefully and wiping down boxes, cans and bags with antiseptic wipes. Washing fruits individually as I do my hands for 20 secs - certainly have the time these days! - but not sure how to deal with knit bags of onions or garlic. Any suggestions?
Good question about veggie washing. We basically did the same thing when our daughter shopped for us. We already had enough onions and garlic for 14 days so I just left the new ones in the bags for two weeks before using them; the damn virus can't live that long. You could also wait until you use them...peel the onion, wash the peeled onion (and your hands) with soap and water, rinse well then use. I think if you try to wash onions and garlic ahead of time they will rot a lot faster.
We don't have antiseptic wipes but put 70% alcohol solution in a spray bottle and spritz all the frig and frozen food containers like tofu, tempeh, & frozen veggies before putting them away. The boxes and cans we treated like the onions, just let them sit for two weeks before using them.
The best part of all this is that we are all cooking at home so much more! It has to be helping our immune systems and healing.
And I LOVE writing about food and cooking, feel free to ask anytime.
Thanks for sharing your good news and the lovely photo.
You look absolutely fabulous!
Wishing you continuous success with your treatment.
I’ve read a little about mistletoe helping. I know the amazing Kris Hallenga from Coppafeel has regular mistletoe infusions alongside conventional treatment and had just celebrated 10 years with MBC!
I live near Portland, Oregon so I went to a wig shop here. It's custom fit. It has velcro or something in the back that I think I can adjust. Frankly I've just been lazy about wearing it because we're home all the time anyway and my little caps are so comfortable! Maybe someone else here has suggestions for online wig shops? Do you wear a wig cap under it?
Yes, you should be able to adjust at back, Patty. I have some hair, very short but thinning due to meds (Ibrance) , so don’t wear the net-line cap that came with my wig. I think it’s all a matter of getting used to sine thing new. Strangely enough, even when not wearing it I can still feel the tightness at the back (or imagine that at least). 🙄
☀️🌷☀️ K
Congrats. You look beautiful and I did not even realize it was a wig., Looks so natural.
Greetings: Sister/warrior. I am so happy to hear you, and Lucy's great news. Your prayers were answered. Lucy looks good on you. A month ago a sister in my church was complaining about how her beautiful thick long hair had lost it's curl pattern. When I told her that I, and other sister/survivors/over-comer's, who battled cancer , and whom had Mr. Clean shiny domes who were fighting to live, that living was our priority. I told her when our hair grew back, we were just happy to see it grow back , whether it was curly or straight. She then said I am so sorry I complained, and with tears in her eyes gave me the biggest hug. Well suffice to say my hair is long, and pretty good in thickness. I twist or braid it up so that I can wear my Lucy, Halle Berry, Beyonce, or several other options according to what I feel when God wakes me up. Yesssssssss I am thanking God for Beauty Supply stores, and therefore my carefree wigs/Lucy's that take me 30 seconds to put on. My real hair would take me 3-4 hours from start to finish, shampooing, conditioning, drying with a fan, not a blow dryer, roller setting, or wrapping, and then fan drying again, trimming and then styling. OMG just thinking about it makes me tired, and I feel like taking a nap. We all need some laughter during these challenging times as we pray for the eradication of the Corona virus . Amen XoXoXo
Thank you for sharing your treatment journey. I have book marked the Mistletoe site. Thank you for that information. It sounds like things are starting to work for you. I take Ibrance and Letrozole and so far have quite good results. But one tumor is not doing as well as the others. I also take a lemon and garlic (strong potion - 1 Tbsp. each morning) which helped cure cancer in mice. Of course we are not mice but it can't really hurt and it gives me a feeling of having some control over my health. The best wishes for you to have a complete recovery. You wig looks very natural. Hugs Marlene
Lemon and garlic sounds like it could cure a lot of things! I agree that doing SOMETHING that feels like we have control over our lives is important.
I debated about going in for my infusion this week, as the infusion center is in a hospital and I had just hit the 14 day mark of being self-quarantined. But I decided to go because I needed the labs done. I'm also afraid it's going to get worse here in Oregon before it gets better and I may have to miss some treatments later in April. I was very impressed at the safety precautions being taken, right from the moment I walked in the hospital entrance.
Anyway, the labs were all good except my neutrophils were 1.6. Their "cut-off" for the infusion is 1.5, but they said it was up to me whether I got the infusion or not. Last month I got the infusion when my neutrophils were 1.7 and by the following week they had dropped to 0.6! I didn't want to risk going that low again with this virus going around so I decided to wait until next week. I really appreciated that they let me decide though....it's a small thing but a reminder that ultimately we are in charge.
Hi Patty, I was thrilled to read your post about your Abraxane success. I have mets to my liver, pleural cavity and spine since 2018. I have been on several treatments, each of which has eventually stopped working. I now have the choice of Abraxane, Paclitaxel, Vinorelbine or Caelyx. So it looks like I'll be shopping for a new wig, unless I go for Caelyn or Vinorelbine, however, your success with Abraxane makes me keen to try it as well. Your wig looks amazing. Do you mind me asking if you also lost your eyebrows and eyelashes with Abraxane? Thanks so much, Jan (New Zealand) x
Hi Jan! I was lucky enough to visit New Zealand once, back in 1989. I was living in Japan and was a chaperone for a group of Japanese students. We spent a week in Auckland and a week in Whitianga, both homestays. It was just lovely, even though a bit chillier in July than Tokyo! I live in Oregon now, which sometimes reminds me of New Zealand....lots of green, not so many sheep.
I'm happy to talk more about Abraxane. Did you see my post of a few days ago? I had a CT scan last week and the liver mets are starting to shrink more, and my cancer marker is staying low.
I chose Abraxane over Paclitaxel because Abraxane is albumin-based, so doesn't require the solvent (Cremaphor, which is Castor Oil) or other drugs some people need so they don't get allergic reactions to the Cremaphor. Abraxane is an easy IV, I don't need a port, and honestly the side effects have been very minor so far. I'm also on a relatively low dose and get it every other week, which I think helps with side effects.
Vinorelbine is on the list of future options for me; I don't know why my oncologist suggested Abraxane or Paclitaxel first. Caelyn is known as Doxil here I think; my impression is that it's stronger, may have more nausea-type side effects, but I'm not sure. When I've been faced with several choices in the past I've asked my oncologist to list them in their order of preference and tell me why they prefer one over the other. That may help your decision.
But yes, hair loss seems to be the big side effect of the taxols, Abraxane and Paclitaxel. Seems it generally comes out after 2 or 3 weeks, and pretty quickly. I had very thick long hair for years so I first got it cut short to get used to that for a few weeks. I'm glad I did, though it still felt creepy when it came out. Now I'm used to not having it and really don't mind the scarves, caps and wigs. The weird thing is that I feel better than I did on Xeloda or Ibrance, but without hair I think I look more like I have cancer. My eyebrows and eyelashes didn't come out right away but after 9 Abraxane treatments I started using eyebrow pencil for the first time, and my eyelashes are definitely thinner. And let's just say I've never gotten a bikini wax job and now I don't need to. (that may be more information than you wanted!)
I hope this helps Jan, please let me know what you decide. Thank goodness there are still so many options out there for us!
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The painting behind it is called "If Your Hair Falls Out, Keep Dancing"...I think there's a book by that name too. It was at the wig shop.
Beautiful Trivers 
Good news 
GOOD NEWS BUT STILL TREMBLING!
