Just wanted to share some good news after a scanxiety-filled weekend. My last CT on Dec 31st showed extensive liver metastases and lots of spread in that organ, which is why I stopped Xeloda and started on Abraxane in February. I had another CT on Monday and had a telemedicine appt. today with my oncologist. She did a split screen and actually showed me how to read the CT, and where the liver mets have shrunk a little. "Think of them as lakes in a field that you are flying over. See how this one is drying up around all the edges?" So cool! I thought I'd be terrified to see my own CT but I was actually encouraged by how big the liver is and how much healthy liver tissue is still there. Even better, there is no new cancer anywhere else, and all bone mets appear to be stable too. So...we stay the course, Abraxane every other week, keep monitoring liver enzyme levels and CA15-3 (it's been holding at around 135 for the last two months) and ride this train as far as it will take me. I don't expect I'll ever be NED (no evidence of disease); right now I'm living well with this and plan to enjoy the summer (though I sure wish I could travel!) Background info: I've had 11 Abraxane treatments so far and my cancer is ER+/HER2 negative, diagnosed denovo Oct 2017.
Thank you all for continuing to be a source of hope, humor and such heartful connections!
Patty
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This is WONDERFUL news!!! I know you are so relieved. I find I'm better off if I can see, like they showed you. I had good results from my first CT a few weeks ago and I have an appointment next week. Hoping they will show me instead of just telling me again what they already emailed me.
I'm in a similar situation only not on Abraxane, but Taxotere and immunotherapy for triple negative BC. My liver mets have lessened and are stable, too! I know we want them gone, but I understand that stable and reduction is good. THe liver is one of the organs that can actually regenerate.
Oh well done Patty...thrilled that your scan was good
You’ve sort of cheered me up by pointing out that the liver can recover somewhat....this is what I’m hoping for my liver progression to do....I was devastated last year when my cancer spread to my liver as it was mainly bone prior to that
Thanks so much Barb! Yes, livers are amazing. A friend had over 2/3 of her liver removed due to cancer and within months it had grown back healthy tissue and her liver labs are normal. Keep the faith! You deserve a lovely summer too...with lots of horse time.
Amazing news! I am so glad for you..It makes such a difference to have a Dr who takes the time to explain things and make it more a conversation than a 10mn lecture! My first Dr was like that, she used to turn her screen and show me the scan and explain everything... It felt so much better , it also makes you feel that they consider you worthy of investing a bit of time to go the extra mile and they trust your intellect to understand ... It breaks the " them" ( Drs) and " us" (patient ) unecessary divide. You need to make sure you feedback to you DR how good this made you feel so they know they are doing this right.
I got my PET results yesterday too... After 4 treatments that failed to stop progression I finally get a bit of restbite with taxol... One area in the liver is still progressing but all bone mets , nodes and other liver lesions are responding so staying on taxol for another 3 cycles..It is so nice not to have to change treatment for once! ( I have been changing every 12 weeks since June last year!)
I think this is very good news after just 4 treatments, glad you are staying the course. I had 11 Abraxane treatments before my scan...I expect it takes a while for the results to show up, especially in the liver. And you deserve a break from treatment change...every 12 weeks for a year, yikes! I find changing treatments to be the hardest, emotionally. But I'm glad your doctor is monitoring so closely and willing to try new things to get your cancer under control.
And yes, I will sing my doctor's praises, I just got an evaluation form to complete about her. You mentioned that your first doctor let you see the scans...hope your current one does too. Will they do a PET again after 3 more cycles, or do they use cancer markers?
Yes they do PET every 3 cycles , which end up being every 9 or 12 weeks depending on treatment ( Xeloda was after 9 weeks)... Every cycle I get blood test and they review cancer marker and liver function... They usually stick with full 3 cycles and only move on to next treatment once PET has confirmed progression...
And sadly no, I no longer get to see my scans on the screen... When my MBC was confirmed ( 5 weeks after original cancer diagnosis) I was moved from my local hospital and my amazing breast surgeon to the very impersonal Cancer Centre... Felt like a chicken moving from an organic farm to a battery factory.🤣... 2 years on I have found a middle ground where I have managed to get as genuine as a relationship I think I will ever get with the consultant there ( I see her generally on results day and make allowance for the random newbies I get every months in between)...I used to ask for copies write up of scan's results and blood tests results but I no longer bother... I have reached a bit of a " Que sera sera " phase....But today I am finally able to take comfort to finally have a break from my treatment merry-go-round whilst managing my expectations...That good old balance we need somehow need to reach between being positive and realistic.😉...
Hi Patty,
Thanks for sharing your good results! You must be so thrilled and relieved. I hope your good news continues.
Good news! Maybe you can get in a few local trips this summer as a way to celebrate. Hotels are fairly safe from what I’ve read. Pick be place within the state that you have always said you would go to! Find a way to celebrate both the news and feeling good! Hugs Elaine
Great idea Elaine! A friend has a little house in Manzanita that he never uses, we're going to call this morning to see if we can stay there a few nights next week. We can bring all our food and just hunker down, read, walk the beach....and try to control the urge to walk into town for ice cream and the book store!
Brilliant. I found it so good for my liver mets lungs and spine. Now on Xeloda but can’t wait untilnov to change back. My daughters Sept Wedding was cancelled yesterday so we are all a bit sad.The venue is not opening until next year. Hope I am still well enough to enjoy It in April.
Oh I'm sorry to hear about your daughter's wedding being postponed....of course you'll be well enough to enjoy it in April! Just plan on it.
Can I ask why you needed to go off Abraxane? My spleen is slightly enlarged as a side effect but at this point my oncologist isn't worried about it at all. But I wanted to know more and I found this interesting article about a simple nutritional supplement called Intralipid that has just been approved for clinical trials. When administered before Abraxane it both increases the effectiveness of the chemo and decreases the toxicity on the liver, spleen and kidneys. Doesn't that sound promising? I'm going to try to find out more about the clinical trial. It would be wonderful if it was an option for you by November.
I had taxol (the older version) which strangely I found easier to tolerate. I had this every week for 19 weeks. It was then I started to feel unwell.The oncologist said they only give between 18-21 weekly doses. I had a lovely three month break I just Had Fulvestrant and Denosumab. Unfortunately I am on Xeloda at the minute which is terrible for my bowels. ‘This week the oncologist told me to take a month off and will do more scans at beginning of July. Last scans in April were great on Xeloda. Best wishes for your treatment and I hope you find taxol as easy as I did.
So happy to hear your news especially since I start Abraxane next Tuesday. Would love any advice about getting started on this drug. You have really lifted my spirits and given me hope.
I was so nervous before my first Abraxane. Honestly, the IV itself was a breeze. My hospital puts in an IV line to draw blood and we wait for the results of the Comprehensive Metabolic Panel and the CBC....liver/kidney functions and blood levels. If the results are good, they give the order to mix up the Abraxane (custom-mixed, takes 20-30 minutes usually). The actual infusion takes about 30 minutes, followed by a saline flush that's 10-15 minutes more. I didn't have any immediate side effects, though another friend here mentioned having diarrhea within two hours so the first few times I wore a "Depends" just in case it hit on the way home!
When I started Abraxane I was getting it two weeks on/one week off. As my oncologist predicted, my hair started falling out in clumps on day 14. I'm glad I'd gotten it cut a few weeks earlier, but it was still creepy to have it falling out so much....looked like a dead raccoon in my shower drain! It took several days to wash it all out, then my hairdresser trimmed it down. (I was told NOT to shave my head, as that can cause a nasty rash and clogged follicles. So I still have a downy white layer covering my head.)
When I was on it 2 weeks in a row I did have some fatigue, generally days 2-4 after the IV. Since I switched to every other week (because it takes that long for my neutrophils to recover) the fatigue is much less. I don't get Abraxane if my neutrophils are lower than 1.3.
The other major side effect for me is that my fingernails are affected. At first it feels like a bruise under a nail, it gets red, then the upper half of the nail gets very white and lifts a little. With every treatment another nail has been involved, it's starting on my baby fingers now! But....the first nails that were affected are getting better now. My doctor said she didn't think I'd lose fingernails but I might lose toenails. So far they seem pretty stable too. Again, that may be due to my every other week schedule. I would do two or three weeks in a row if my neutrophils could handle it though, because I think it's effective.
Sorry this got so long! Wishing you and easy introduction to Abraxane, please keep us posted!
Yes, I think it helps too! You or someone else here recommended it. Except for the hair I too think Abraxane is easier to live with than Xeloda. I didn't have stomach issues with Xeloda but my feet were definitely taking a beating. Happily they healed quickly once I was off it.
Enjoy your time off Xeloda. I hope you feel better soon once you stop and can enjoy the summer!
I'm so very happy for you! How great it will be for you to enjoy your summer knowing that your treatment is working and you are stable. Like you, I don't ever expect NED, but I have come to take "no progression" as great news.
I really like your oncologist's comparison of liver lesions with flying high above a field with lakes (especially the ones that are drying up). Good image - puts it in perspective knowing that there are a lot more healthy cells.
Enjoy the relief you get from your good news!
Barbara
PS I had a PTscan today. I won't see my oncologist until next Wednesday, but hopefully, the results will be available online before then. There was a post the other day about when is the best time to get the results. I know everyone is different, so it's a very individual decision. As for me, I want to know the results beforehand (good or bad). If they are bad, I need time to absorb the information.
I'm with you. It helps me calm down and, if necessary, do some research about next treatments. I get a lot more out of my meeting with the oncologist that way.
Wow. Thank you for sharing Patty. I was dx the same time as you with same dx. I am right behind you with treatments. Continue doing well and thank you for sharing your encouraging news. Faith
So glad to hear of improvement on Abraxane. I have been on Abraxane/Tecentriq for 3 months. 3 weeks on 1 week off, 1st and 3rd week is both, 2nd week is only Abraxane. My hair started falling out the 3rd week. My daughter trimmed it up so I wasn’t getting mouthfuls of hair from my pillow at night! I have some long fringe around my face that I can pull out from my hat. Not much but it helps my self esteem.
I was told to take B6 - 50 mg daily and Alpha Lipoic Acid - 200 mg daily to help with the nail issue and neuropathy. So far no problems. I also get fatigue starting the evening of day 2 thru day 4. The 3 days before my next treatment are my good days. I can taste stuff again and have more energy.
I am scheduled for my first set of scans, post treatment, next week. I am hoping that I can reduce the Abraxane and just stay on the Tecentriq.
I take B6 daily too, 300 mg, also for neuropathy. I also use l-Glutamine powder on days 2-5 after the IV to help with neuropathy; so far I haven't had any. I'm sure getting it only every other week helps with that too. I wish there was an immunotherapy like Tecentriq for ER+/HER2 negative but I haven't heard of one yet.
Regarding taste, my ND oncologist recommended 30mg zinc 2x/day to help maintain taste, which seems to help. I also swish several times a day with a salt/baking soda solution to help normalize the Ph in my mouth.
Congrats on this wonderful news! Shrinking is excellent- and I like the idea of lakes drying up— great visual image! Enjoy, celebrate and keep on keepin’ on!
So pleased for you! We were both diagnosed denovo at the same time .Hope you get a good run on this treatment . Enjoy the summer , even if we can’t travel beyond our own shores ! x
That is awesome news. I’m so happy for you. It gives me hope as I started Abraxane in May. You have chemo every two weeks? What dose do you get? Mine is only every four weeks.
I am truly excited for you. We don’t get a lot of good news so I hope you are celebrating ❤️ Sarah
Thanks Sarah, I am feeling like celebrating, and so glad to share the news with others like you who are on or considering Abraxane. Reading previous reports here definitely helped me make the decision to go ahead with it.
I'm sorry I don't know my exact dose...60 or 80 whatevers, I think. I believe it's a relatively low dose because I'm not that big (126lbs/57 kilo) and I'm pretty sensitive to meds. Originally I tried having it 2 or 3 weeks in a row but my neutrophils dropped too low and took too long to recover. I actually like this every other week routine; there are almost no side effects like fatigue or taste changes. Hopefully it's just enough to keep percolating in my system and keep the cancer at bay.
Let me know if you find out your dosage. How did you feel after your first one in May?
Mine is 490. I asked the last time. The chemo in May I had the Zometa IV the same day. I was exhausted for a week and had a lot of joint pain and stiffness and body aches. The second day I had a lot of head itching and a few bumps but the cleared up. I had pins and needles in my arms and legs. In day 21 my hair fell out. It was huge handfuls all day. I had no idea it would all come out in a day.
This month was just the Abraxane and it wasn’t as bad. Really exhausted. I could sleep 18 hours a day. The aches and pains weren’t as bad though. Some odd moments of a nausea but it cleared up. My head in the other hand was a mess. The second night it started itching some. In the morning the right side of my scalp and the back were these angry red pimple like bumps. I took benedryl which didn’t do much so I started wiping my head with rubbing alcohol and when it dries I alternated polysporin, benedryl cream and hydrocortisone. At night I covered my head in corn starch. So I had each cream once a day. I have a fan blowing on my pillow. It’s seems to be the side I sleep on. I have the night sweats really bad and I think my sweat is strong or something.
I am going to ask the oncologist this month before my next chemo. It’s not an allergy as it doesn’t spread. Looks awful and at night when I get warm it itches. Hopefully they have a quick answer.
I hope each scan you have shows those nasty little lesions disappearing and the ones in the bone healing. ❤️
Oh this sounds tough Sarah! I had my Xeloda once with Abraxane and I'll never do that again. Same thing...joint pain and aches that I've never had before with it. Even if it means I have to make an extra visit to the hospital on my off week of Abraxane it will be worth it.
Do you know why you are getting a larger dose of Abraxane once a month instead of smaller doses over 2-3 weeks? I've also seen dosing of 260mg/ every 3 weeks. It may be worth asking about.
Yes, the sudden hair loss is shocking. I first noticed when I was out eating ramen with my son (he's 30) in February; I took off my knit cap and a shower of hair came floating down! He sweetly picked a hair out of my ramen and held my hand. That afternoon it came out in bunches in the shower, but actually took a few days to mostly come out. I still have a downy covering of white hair. Did you by any chance shave your head after your hair fell out? I was told not to do that, that it could cause the kind of rash and itching you describe. But maybe it's heat rash too. I always run cold so I really don't sweat much, in fact I usually sleep with a cap on because my head gets cold.
When I had Abraxane 2 weeks in a row I had fatigue for days 2-5 afterwards....not debilitating but definitely took longer naps and shorter walks those days.
Just one other thing related to the pins and needles. My naturopathic oncologist has me taking l-Glutamine Powder on days 2-5 after my infusion, to prevent neuropathy. I use a brand called "Pure Encapsulations" and have 2 scoops in water, 3x/day. I've had 11 infusions so far and, knock on wood, no neuropathy yet. I also take Vitamin B6 for that.
I hope your oncologist has some good suggestions for the rash, or can refer you to a dermatologist. And hope next month's infusion is easier on you. And may your scans show the mets shrinking too! We can put up with a lot if we know it's kicking back the cancer.
Thanks for sharing so much, it helps so much to share similar paths on this crazy trip.
Yessssssss Do enjoy your summer. Yayyyyyyyyyy for you, and your loved. ones. May God bless you with continued great results. Hugs from at least 6-10 feet away (smile)
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