Hi Ladies
I’m upset after my good scan a few weeks ago
My platelets have dropped and I can’t take Xeloda
On top of that my markers have suddenly risen so my oncologist suspects there’s progression in the bone marrow and wants to start me on Taxol once a week for three weeks and a week off till it fails
I’ve always refused IV chemo but now it looks like I’m going to have to give it a go
Any tips or experiences would help...I’m absolutely petrified and thinking this is the end of the line
Barb xx
Sorry to hear this Barb. I have been on Taxol before with orig b/c diagnosis. Will you have a port? I have tips for dealing with port infusions if that helps. Will keep you in my thoughts. Stay strong...
Oh Barbara - I know exactly how you feel. This was me a couple of weeks ago - but enzymes not platelets. I was so upset. And I used that exact expression but my oncologist assured me it wasn't and it could all be reviewed again. I had my first taxol on wednesday and I've been fine. Haven't had any side effects at all so far. Am using the cold cap. Do direct message me if it would help at all or I can answer anything. I was terrified too but so far, so good and I've been reading up on Taxol and it can be v effective... thinking of you xx of us all...
Thank you for that reassurance...I gathered that the weekly dose is lower so hopefully fewer side effects
It just seems any time I ever get good news ( not often) it’s quickly followed by bad news...
I was thinking of trying the cold cap as the thought of hair loss is awful...I’d just made an appointment fir my hair extensions to be redone in April when salons reopen...serves me right for such vanity!!!
Barb xx
I am so disappointed for you Barb. I echo the supportive comments others made.
I used the cold cap in 2014. It is a bit of a hassle, but it worked for me.
It is extremely cold and requires frequent changing during chemo. Having a chemo companion to manage the caps is helpful. I recommend you talk with folks who’ve done it for tips.
Please, feel free to PM me with any questions about the cold cap.
Good luck.
No advice to offer but you are in my prayers.
I will say there are so many times women on the boards I follow say they worry it’s the end of line but it absolutely isn’t.
Are there further tests you can do to confirm marrow progression before starting taxol?
I’m not sure about bone marrow tests but I’ve only just had an mri and ct scan which were good...mri stable and ct partial response which is why I’m so shocked about the platelet drop but apparently a drop two weeks running is a cause for concern especially with the rise in markers
Barb xx
Hi Barb, so sorry to hear about your news. Just wanted to chime in and let you know that Xeloda is known to causes issues with blood counts and marrow suppression (platelets). I’d advise to take a look at articles related to xeloda toxicity ... it sounds like you may have been experiencing this which can cause your counts to change while on xeloda which is specifically related to the toxicity of the drug itself. Best of luck ❤️
Just wanted to add: if you are having side effects from the xeloda they can quickly start worsening. It’s a known issue with this drug. People with DPD deficiency can have life threatening reactions. The Vistoguard website (vistoguard.com) explains more about Xeloda toxicity. Hope this may be of help.
Barb also sorry to hear this. I was on Taxol for several months, it was working but increased neuropathy for me (doesn't always do that). I decided to try something else, tamoxifen. Started last week on this. I did not get a port. Taxol has side effects of course, but for me it was worth a try; it did very much slow down progression. You are for sure in my thoughts and prayers. I pray treatments work for both of us. Keep us posted on how you are doing. I will find out how I am doing in a few months, when the next pet scan is done. Meanwhile, hang in there, the ladies here will be a good support for us. Sending hugs...
Thank you Susie for your kind words...it’s the neuropathy that concerns me from reading the side effects but depends how I react...could be not too awful
I was so pleased with scan results I’d ridden my horse twice recently after not doing so for six months...now I feel it’ll not happen again and I’m so miserable
Barb xx
No neuropathy for me-just gi issues in the upper gi.
Well I guess I might be lucky and not suffer from neuropathy
Barb xx
I replied elsewhere too, but want to add I totally hear and empathize with your fear about not being able to ride Bugsy again. My boy Liam injured himself and is lame. The vet said it could be 6-9 months of stall rest. One of the girls at the barn said 'oh, that's not so bad" in a chipper voice. (She doesn't know about my cancer...) I snapped at her, poor thing, and said "yes it is," thinking to myself that I may not be able to ride in 9 months. I am sure she thought me a cranky old cow!
I have my daughters ex racehorse who hasn't sold, but she is large, young and spooky so I spend the whole time worrying about what might happen. Daughter is at college, so she really just needs to be sold. I so miss the safe, easy feeling of getting on Liam and cantering out in the field, or mustering the guts to do doing low level eventing competitions--and not thinking about cancer for a bit. Who knows if I will have that again.
Anyway... not to make it about me... I don't have any glib advice to make it 'better' other than to say, horse person to horse person, I hear you loud and clear ...
And to add, for what it's worth, that you don't know you if will "never" do something until "never" happens. I think hope is worth hanging onto....
xoxo
Like you I fought the IV chemo as long as I could (4 1/2 years 👍🏻) but am now on Eribulin which is actually working after Xeloda stopped working. It’s not that bad actually & I finally have a port so those blood draws are much easier now.
Hello Barb,
My med onc did the Oncotype tumor test and determined that the benefits of IV chemo would not outweigh the risks. I am petrified of IV chemo as well. Is the Oncotype testing a possibility for you to request?
Sincerely,
Colleen
Hi Barb
I am truly saddened to hear your news.
Like you, I’ve always dreaded IV chemo and always been very scared of it. I’ve never wanted to look like I have cancer, hair loss etc. However, Xeloda is an oral chemo and it isn’t so bad after all.
Therefore, I’m sure it could be worth trying taxol.
Just some thoughts on options I may consider in your position....
Is it worth seeking a second opinion?
Is there an option to cycle back and try palbociclib again?
Can you try verzenio/albemaciclib? Although not yet approved on nhs - could you still try and push for this?
Are there any tests you can have to ascertain taxol potential effectiveness? Are there any clinical trials you can try?
I am thinking of you, care about you loads and I’m wishing you all the very best. Your news, brought tears to my eyes ....
You are amazing and I hope you still get to ride Bugsy.
It’s due to be a lovely sunny day today.
Take care
Jo xx
Ps I’m currently on my week off of my 5th cycle of Xeloda, doing ok but my feet are a bit cracked and sore but I’m on top of it with urea creams, cotton socks, gel pads etc ...
Thanks for your kind post My oncologist is in a multidisciplinary meeting tomorrow before I see her so she’ll be discussing my case with the other oncologists
I’ve sort of given up...it’s the other symptoms I have to put up with...vision problems and numbness on my lip and chin which are constant reminders
I feel as if nobody cares now and what’s the point of living longer if life is no fun anymore
Barb xx
MBC is crap! Sending you a hug 🤗 x
we are here for you and praying hard🙏🙏🙏 go ride that horse!
i second all of what Jo said. It might very well be worth getting second or third opinions. Either they will confirm you're on the best path, or give other ideas. Please don't give up!
Hi Barb, I'm sorry I've no experience (yet) to share with you on your new treatment plan, but I can identify with your worries. I wanted to let you know that your in my thoughts and I'm sending you good wishes and I know all the ladies on this site care very much for you, and Ive no doubt when you get your head around whatever the next plan is, that you will find your strength and be back on your beloved horse.
I’m in the same position barb. I’ve already had cape, then Eribulin only worked for about a month. I was put onto weekly paclitaxel three weeks ago. Unfortunately last week I had a bit of a drama in the Chemo ward when I had an allergic reaction to it. I’m now set to start Abraxane tomorrow. Exact same drug, just diluted in a more expensive solution that is less likely to cause a reaction. As far as side effects, my appetite suffers for the first 72 hours following infusion. Apart from that, I’m fine.
I do wonder what’s next though. My liver enzymes have been through the roof but my last blood test showed slight improvement, so hopefully taxol is working. Ive asked my oncologist to refer me to Sarah Cannon in the hope of finding me a clinical trial. Have you considered this?
Good luck with everything x
Hi thereHow awful having an allergic reaction...glad you’re over it now
Hopefully I’ll not have too many side effects
I’m not feeling good at the moment and I think it’s just fear of the unknown and is it all worth it?...
barb xx
The week before I started paclitaxel my oncologist actually asked me if I wanted to stop all treatment 🥴 That was a huge blow to me as I’m asymptotic and at 46 I’m not ready to roll over yet. He did apologise after, but it truly wounded me.
I’d say this drug is definitely worth it. My quality of life is very good.
And after that you’ll have Eribulin try, this is another IV Chemo but with few SEs Eribulin is a very short infusion too, only about 7 mins so little time spent on the Chemo ward.
To be honest, the worst drugs for me were letrozole and palbociclib, I struggled with that combo much more than I have with any IV.
Fear of the unknown is brutal. It can be very debilitating. I know you’ll feel better once you’ve had your first infusion. One foot forward barb, that’s all it takes. Xx
Barb,You are in my thoughts! Please keep us posted on what you & your Dr. decide to do. Keep the Faith & take it one day at a time!
❤ Bev
Hi Barb: Sorry you are where you are. I just came through that as well. I opted for trying Tamoxifen. I don't know a lot about IV Chemo. I don't think it is the end of the road. Wishing you well.
Cheers, June S.
No advice, but know you are very much in my thoughts...
Oh Barb I'm so sorry you are going through this. I read sunnydrinkings response. Is there anyway you could write down her questions and call your oncologist and ask her to ask these questions at the multi disciplinary meeting tomorrow? Sometimes mentioning something clicks with someone and they find themself saying you know it might be worth a shot!!! I too am scared to death of IV chemo I think our fear comes from seeing the people of our past who went through it. I felt they looked terrible!! But from what I understand they know a lot more about things now ex. How to control and treat side effects. That it's not as bad as it once was. I hope what ever is decided is best for you that you do well with it and feel so good you will be out ridding Bugsy many times this summer and fall!!! Take Care you are in my thoughts 🐴🐎🌈🌞 in your future.
Oh Barb, sorry to hear that but hopefully you will do well on it.
I did twelve weeks of taxol after my original diagnosis. It was much easier than Xeloda for me. Watery eyes was the worst side effect I experienced. I was so terrified of losing my hair, but once it happened I kind of made peace with wigs. Losing eyebrows and eyelashes was much worse. Now the serums apparently work to preserve them. I'm sorry you're facing this. I understand the "is this worth it' question. Andi
Hi Barb, I am so sorry to hear about your news. I was on Taxol for several months. Weekly injections. I didn't have any really bad side effects. I had my hair buzzed but never lost it completely. Just kept it really short. I am now on Xeloda and the side effects for me are much worse Hang in there. If you do the port route be sure they prescribe a numbing cream to use before treatment. I highly recommend it. I have progression to my bones and on monthly injections of Xgeva.Hang in there my friend we are all here for you. You can message me as well if you like.
Hugs
Robin
Hi Barb I am sorry you are having to face this change in medication , it is always scary . I have just completed 6 Taxol treatments 2 weeks on 1 week off . I have not felt this good in a year . I don’t know when the ibrance quit working but I was not feeling well on it and dosages were lowered .
I would recommend a port for the IV a chemo . As I believe you mentioned you like to swim , once you are healed you will be able to swim .
Do not shave you head , I did and after a few handfuls it quit falling out . So I have a even stubble . I have a nice wig but usually wear a hat .
I also take Pertuzamab and Trazumamab
and will continue with this IV a infusion every 3 weeks until it doesn’t work anymore.
I really feel like the Paclitaxel, Trazumamab ,Pertuzamab have given me a better quality of life .
I also started taking CBD oil drops , it has helped with pain management .
If you have any questions , ask away .
All the best to you
Luann
Barb,I'm so sorry you received this news. I had a port and Taxol during my original dx. I just found I had fatigue.
Having a port will make the IV easier.
I did lose my hair, but bought cool wigs and head coverings.
I wish you all the best with it and may it zap the crap out of your cancer!
There are many more chemos available...dont think this is the end of the line.
Love,
Marianne
I had Taxol back when I had my original BC in 2012-2013. I had previously taken 4 rounds of the horrible stuff called Red Death. That was horrible. Taxol on the other hand, I tolerated quite well. It did not effect me so much. If you can do it through a port, it is much easier. I think the only real effect was some serious fatigue but that seems to go with any of the treatments we get! Hang in there. Thinking of you.
Frozen mittens and booties can stop all neuropathy. It did for me!
I can't do xeloda either lasted 10 days on it have been on iv since last summer no problems no real side effects. good luck Get a port!
Barb, it's never "the end of the line". There's always another train to catch. Keep the faith. Best of luck on your journey.
it makes the heart sad to read about the dropping platelets and rising tumor markers. keeping you in my thoughts.
I have had my second dose of IV chemo of Carbo and Avastatin. Some fatigue but certainly tolerable. I have not read of this combo on this site, yet. I don't think IV chemo is a step backwards. Unlike 20 years ago when I was first diagnosed with stage 2, they add other IV meds, to help with nausea and inflammation.
I hope you have success with your new treatment.
Best,
Sue
Hi Barb I have been on Taxol every week without week off for nearly two years now. It is not so bad once you get used to it. I have around 19-21 weeks on and then about 12weeks on Fulvestrant as my rest period. Relax. You will be fine. xx
Where are your Mets? I’m on my second line of treatment and scan shows liver mets and next treatment is IV Chemo.
So sorry to hear your news. I totally understand the good news and then bam the bad news. I have been resistant to IV chemo, because I had it with my first diagnosis, but that was over 20 years ago so that is emotional not factual fear. Reading all the comments makes me feel much better about the possibility in the future. I start on new treatment this week, but concerned about side effects that are much like PIQRAY.Keep on rolling Barb, that is what we do.
Rising tumour markers 
Cancer Markers Doubled
Tumor Markers Trodelvy 
tumor markers
