Anyone with experience with Trodelvy side effects and cold capping to save hair? Also how long did you take Trodelvy?

[Sparky95]

After one treatment of Enhertu I developed Intetstitial lung disease- ILD. I had high hopes for Enhertu and my oncologist says we may be able to try it again as I had Covid when I got my infusion. However my tumor markers which originally never showed anything skyrocketed so she had me start on Trodelvy. My oncologist recommended trying the Penguin Cold Caps to save my hair. The medical team in London for Penguin didn’t think it would work. I had created my own cold cap in 1999 when I had AC and Taxol and had some success. I wanted to see what the real cold cap would be like.

I’m also curious to learn how long anyone has been on Trodelvy.

With advent season I’m trying to stay hopeful and keep up the fight. January will mark 4 years and this last year has seen exponential growth of my cancer in my bones, nodes, lungs and liver. I have a brain MRI tomorrow and I’m praying it hasn’t spread there.

Praying for everyone fighting this disease, for our families and friends and for all the medical professionals who guide us.

Esther

[Kruza]

Wishing you well my fellow warrior. During this season of hope, I will continue to hope that a miracle is around the corner for you.

[Sparky95 in reply to Kruza]

Thank you. This is the season of hope and I am thankful for all the love and support! Wishing you the very best.

[Ursula_I]

hi,

Just wanted to wish you all the best, that's a bummer about the ILD. Enhertu is next for me, apparently...

I had a great experience with cold capping in 2016, I lost about 40% of my hair, through severe thinning, but when I came off the chemo it grew straight back and quickly filled out the hair that I still had rather than taking months. I say, go for it!

Wishing you well for the brain MRI too. I too have one, next week, in my case because they have already seen brain progression in a CT scan a few weeks ago. Good luck and much hope to you.

Lucy x

[Supermary in reply to Ursula_I]

hi Ursula

I have been on ENHERTU since July 2021

I go every theee weeks for my infusion I am HER2 positive stage 4 Uterine cancer

I am sorry to hear about the ILD hopefully it is ok now

EMHERTU has given me a very very good response thank god if the 4 returning nodes two are 100%gone and the other two 90%

My drip 30minutes in fact I go to today

I get a 30 minute meds and pre cancer drip(I start cold capping) ; followed by the 30minutes of ENHERTU (still cold capping) ; then I cool

Down about 45 to 90ijites depending on my schedule ——most important thing is a good

Fitting cap . Take Tylenol and some relaxer if you can to help you then the first 12 minutes of the cap after that it’s no big deal

I have cold capped with PAXMAN every treatment since June 2020 when I was first diagnosed with cancer

I cold capped they a 3.5 hr drip of carbol taxol qty 6 and lost about 50%of hair wore a scarf

thru the ENJERTU treatments over the past 1.5years I have cold capped every time I have not lost my hair and it’s been growing back I take vitamins use aveda shampoo and go easy on the heat appliances and yes I color it

hope this helps

Margaret

[Sparky95 in reply to Supermary]

So awesome to hear your great result with Enhertu. Thank you for sharing your cold capping experience and how you care for your hair. It is so helpful.

[friesianfan]

Hi there,

We don’t have experience yet, but my wife is scheduled to start Trodelvy as her fifth line of treatment the first week in January. Our onc is recommending the cold cap as well, though she said there is very little data for use with Trodelvy at this point. Fingers crossed that it works well for you and others! Will be following closely for other info as well as I have not seen much about Trodelvy on this site, though the recent results look promising, including for HR+/her2- in addition to the TNBC patients for whom it was originally approved. Happy holidays and good luck!

Dave

[Sparky95 in reply to friesianfan]

Hi Dave

I will post my results and try to let you know how it goes. They told me to cold cap for 7-8 hours after the infusion. I should know by the end of this month if it worked.

I am hoping Trodelvy works. It is my 7th line of treatment and like your wife I’m not triple negative, my last biopsy was still ER+.

Wishing you and your wife a blessed holiday season.

Esther

[Hopeful4Cure]

I asked my doc about the cold caps too. I tried to use ice cubes the last time and it did not work it just gave me a head ache. The doc said that if anyone has lesions on the skull or brain that using a cold cap would not allow the meds to skull because of the cold. I am wishing and hoping that your MRI comes back clean with regards to your head. I am waiting too for news and after 7 months on

[Sparky95 in reply to Hopeful4Cure]

Thank you so much for sharing what your doc said. I’m going to write my oncologist now as I do know that my last bone scan had shown it in the left calvarium, which is part of the skull.

I’m so glad to hear you’ve been on this for 7 months. It gives me hope.

Have a blessed holiday season.

[Hopeful4Cure]

Sorry about the confusion - yesterday I had problems with typing and not being able to fix errors and I see it just cut off the rest of my post. Anyhow, as I was writing, I have been on cap for the last 7 months. When I first had chemo in 2016, is when I tried using ice cubes and it just gave me a headache. Doc gave me a few choices if i need to change meds and enhertu is one of them. I think he told me that there is a 10% chance to lose hair on that iv. Won't know until the 12th what the blood test show and the pet. I am in spain and the 6th and the 8th are holidays here so not sure I'll get both tests back in time. Blessing to all...

[lynnhbtb]

I did trodelvy last year. Cold caps did not work. They worked for all my other lines of chemotherapy—taxol, Carboplatin, abraxane, taxotere. Penguin told me they wouldn’t work. I tried anyway.

My side effects on it were pretty rough. I only did it for a month. Didn’t stop progression.

Wishing you the best. We’re all different, so your experience may be different.

[Sparky95 in reply to lynnhbtb]

Thank you so much for letting me know your experience. I just had my day 8 infusion of my first cycle today. From what I’m reading many people lose their hair a week or so after that so we will see. So far my side effects haven’t been bad. I had high hopes for Enhertu but only got one treatment.

I hope they were able to move you to a a new treatment that stopped the progression. Wishing you the very best!

[lynnhbtb]

Best of everything to you. I've lost my hair twice in 10 years. In the grand scheme of things it's small potatoes.