Trodelvy update

[Iwasborntodothis]

Having super good run with this drug going onto round 10 or 11 - CEA normal and CA15 down another 4% all other liver and general chemistry normal. I wanted to reiterate that the side effects get more manageable too. I believe that results from the San Antonio Conference last week will make this drug more of a first line IV chemo for you guys in the future. My oncologist attended and is very excited about the information shared there.

Please make sure that you ask your infusion center/oncologist for my pre-meds because one of the infusion nurses told me that the pharma rep didn't know about some/all of my docs' strategies. I get: Emend, Tyelonal, Steroids, Benedryl, Hydration, Zofran, and Alxoi. Plus on week two, I get a dose of Neulasta (On-pro). Finally, don't let them reduce infusion time for this less than 90 minutes as this seems to help with side effects.

I am generally constipated the first few days from the Zofran so I take Senecol and Calm to ease that. I know a lot of people have the opposite problem but that has not been my experience.

I learned the hard way on vacation last week that this drug makes you extremely heat/light/photo sensitive and as a result I have a nasty heat rash on my chest, neck, and arms that requires prescription cream. Please be careful for this as it is not really stressed in the literature but makes sense since the drug arrives from pharmacy in its own sunshade bag.

Please feel free to DM me any questions, not here a lot but want to be a resource.

Allison

[Aprilfoolz1]

Wonderful news! Can you share what your er/pr/her2 status was when you started Trodelvy? Do we need to have a specific mutation to start this drug? I remember when it was approved for er/pr + stage IV .

I meet with my oncologist next week and am looking forward to hearing highlights of the San Antonio conference .

[Iwasborntodothis in reply to Aprilfoolz1]

Stage Four at diagnosis HER2 Neg, ER Pos, PR pos - no BRACA no PIKA

I believe it was originally approved for triple negative only then for my type this year. So many great discoveries!

[Hopeful4Cure in reply to Iwasborntodothis]

Same as you, but HER2low and will find out soon as I am being tested to finally make sure my original dx has not changed, since I have gone through so many meds in the last year. Hoping you have a good run too. Happy Holidays

[Rorita]

Great news before the holiday season 👍did Trodelvy affect your hair and ability to work , if you still working? Have a blessed Christmas and Happy New Year from Sydney Australia 🇦🇺

[Iwasborntodothis in reply to Rorita]

My hair fell out within 2 weeks - it had just started coming back during failed treatment with Carboplatin. The unfortunate effect of that is now my husband is "superstitious" about any hair coming back on my little head.

I owned 50% of a biz and have been trying to sell for the four years since my diagnosis. Fortunately this sale came through right when I started the drug. I think I could have worked but the transition from the failed Carbo to this drug was rough and I didn't want to have digestive issues in a public restroom at the office.

Merry Christmas to you too.

[love2golfwell]

Thanks for sharing your good news about using this medication. Hoping and praying you continue to have good results with minimum side effects. Sending hugs and prayers.

[Iwasborntodothis in reply to love2golfwell]

Thank you!

[Kcap430]

Hoping your treatment keeps working for you for a long time to come!

[Iwasborntodothis in reply to Kcap430]

Thank you!

[Best521]

Hi Iwasborntodothis, It is great to see you continue to have very good results with Trodelvy Thank you for providing updates on your experience. The posts from MBC patients with actual direct experience are invaluable and the reason I come to this site. I am about to start my eighth cycle with Trodelvy to great success. I have had a 25% decrease in tumors, not far from what is termed a “partial response” although I am still termed stable. My care team has done an excellent job of tweaking my premeds and providing guidance for managing side effects. Your premed cocktail is similar to mine, except my team has removed Benadryl and now uses Claritin which helps tremendously with fatigue. I am able to run errands after infusion. My Nurse Practitioner said it is a still a new drug and they are learning. The ADCs hold so much promise of more effectiveness with less side effects. Fingers crossed all of us on this drug will have nice long runs.

[Iwasborntodothis in reply to Best521]

I will ask about the Claritin because I am wiped out after the benedryl. I suspect I will get a hard "no" because I had an allergic reaction during a Taxol infusion that made all of my infusion nurses very nervous.

Glad to hear that we are all using this site and our experiences to help the "future us" - I wish there had been something like this when my sister was going through this 6 years ago.

There is so much more hope for us all and I am so grateful. xoxo

[13plus in reply to Iwasborntodothis]

Great to hear you're doing so well! With others I know, Claritin is the go-to for those who are allergic, or can't tolerate Benadryl so you may have luck convincing them to try it

[Hopeful4Cure]

Thanks for the info. My onc also attends this every year and we are in Spain. I am interested too to see what is new, etc for so many of us that have many different types. Blessings Happy Holidays too.

[Iwasborntodothis in reply to Hopeful4Cure]

Thank you!

[mariootsi]

Hope you have continued success with this drug for a long time!

[Iwasborntodothis in reply to mariootsi]

Thank you!

[Bettybuckets]

glad to hear that it is all manageable and so promising! Thank you for sharing.

[Iwasborntodothis in reply to Bettybuckets]

Thank you!

[Samsontheodore]

So good to hear from you and all your helpful hints! I started Trodelvy yesterday because of cancer progression after Enhertu. Loved Enhurtu with few side effects and good Petscans, but once my oncologist saw ascites knew I needed to change after 20 Enhurtu infusions! I have ascites (not from liver) and had parcentesis today (removed 5,500cc’s of fluid from abdomen). Been MBC since December of 2019, and so grateful to still be here! Hoping this new chemo clears things up with my ascites (fluids)! Thank you again for sharing just what I needed to hear!❤️

Renee Rich Henry (Facebook)

[Iwasborntodothis in reply to Samsontheodore]

Glad to help! Praying for lots of success for you on Trodelvy.

[Samsontheodore in reply to Iwasborntodothis]

😘🙏🏻❤️🥰 Thanks so much!

[awesome4ever]

Allison that is fabulous news! I'm so happy that you are doing so well on this new treatment. I'm always wary of photosensitivity with any of these drugs. My oncologist really emphasized that for me when I started my 1st line of Ibrance so I just assume it applies to most if not all of cytotoxic stuff. Sorry you had to learn the hard way though. There is certainly much hype about Trodelvy and it seems to be proven to work well. I don't think it will ever be a possibility for me though. Where I live it's approved for Triple Negative only and yesterday I saw that the agency that recommends approval or not of drugs to our Provincial bodies ( I'm from Canada) released a statement that suggests " that the price of Trodelvy needs to be reduced by at least 87% from the manufacturer for it to be cost-effective and then they would consider approving it for HER2 low". I think I can safely say I won't have access to the drug.

However I am happy that going forward many of you ladies here will be able to have this as an option. I hope you continue to well and can enjoy your holiday season this year. Take care.

[Iwasborntodothis in reply to awesome4ever]

This makes me so sad and I am so sorry as I didn't mean to boast about my options. I also am blessed to have good health care coverage through my husbands employer and I know that is something I should be grateful for every day. My goal always on this forum is to document my journey for "future me".

For perspective, when my sister was going through her journey with breast cancer 2011-2017, the drug Kadcyla was not yet approved for Canada, England, or Australia and I remember feeling sad about that too after seeing women online asking for access. I believe this drug is now widely used and available.

There is no easy answer and I value your input on this topic. My prayers are with you for the holidays.

Allison

[awesome4ever in reply to Iwasborntodothis]

Allison please never stop writing about your successes with medications. I never even considered you were boasting. I'm very much a realist as to what options are available to me and although yes it can be frustrating to see so many new drugs come on the horizon that I can't access.....but I never ever begrudge those that can. I just try and put my mindset that if I can keep going long on each subsequent treatment that is available to me maybe other options will become main stream here too. I have always loved reading your extremely informative posts so please keep them coming. Happy holidays to you.

[Iwasborntodothis in reply to awesome4ever]

xoxo

[MSWife in reply to awesome4ever]

I thought Trodelvy had been approved for advanced HR+Her2 neg disease as of this summer? No idea which/how provinces are covering it though? Usually there are some exceptional access programs if one doesn’t have private insurance.

[awesome4ever in reply to MSWife]

Hi MSWife. You are correct in that Health Canada approved the drug for HR+ Her2- in July of 2023. However all Provincial programs are at this time only approving it for TNBC . There has been a re-submission by Gilead Sciences Canada, Inc. the manufacturer for it to be reviewed again based on even further study data. CADTH will provide a draft recommendation for stakeholder feedback in early January for a 2 week period. After that time CADTH will release their recommendations again as to whether they support individual provinces adding it to their formularies. I am hopeful for all Canadians that it will get approval but realistically in a Government funded cancer care program cost is always a driver for their approvals. Exceptional access programs or what used to be called compassionate care programs are very difficult to access and really not an option at least where I live.

[2019artist]

Trodelvy has financial assistance via the manufacturer Gilead Sciences . wouldn't this apply to folks outside the US? You would think! I got Verzenio for free when my insurance wouldn't cover the cost via the lily cafes Foundation. I'm on Trodelvy now and tolerating it well with the tweaks to the added meds. I'm going to ask for the claritin! I had not idea that they substitute claritin for Benadryl. Yay!

[13plus]

Hi Iwasborntodothis! I just found this post with a search and see that you're taking this drug which is part of a trial my doctor had given me the paper on 6 months ago, I think as a heads up as a possibility for after the Afinitor, which I was just starting at that time. Now I have to change treatment but my oncologist is missing from work and the interim doctor I was told "doesn't have access to the trials" so she is putting me on Xeloda. I now wish I'd pushed to have another oncologist at the hospital look at the trial paper for me.

Tonight I was reviewing the trial information again and see that I am definitely eligible for the Phase 3 study (ASCENT-07) Trodelvy VS. Doc's choice of standard treatment (Xeloda). Are you on this trial? I'm currently waiting for Xeloda to be delivered to start that but tonight I am REALLY thinking about calling up Rutgers tomorrow (that's the local place to me running the trial in conjunction with my hospital) and asking if I can apply, and hoping they can use my scans from end of December. It seems there is lots of positive talk about Trodelvy over the standard treatments?

Some of the possible bad side effects of Trodelvy seem a bit scary, but then again it seems everyone is so positive about it. If I just start the Xeloda with the current doc now, I don't think I could be considered for the trial later. Ugh, I'm at a bit of a loss as to what to do. I so wish I could talk to my regular oncologist! Do you hear of others around you having great success on Trodelvy too? What do you think you would do if you were in my shoes? I've exhausted the hormone-related treatments like letrozole,tamoxifen, and faslodex.

[Iwasborntodothis in reply to 13plus]

I am not on a trial - Trodelvy was approved for my "type" of cancer last January. Trodelvy is new and there are probably only a few of us on this forum taking it right now - 4?

Do not fret about Xeloda - it worked for me for a year. I have posts about it too. The Hand Foot thing is bothersome but manageable. Don't worry - stay the course and when you are through with Xeloda, Trodelvy will be easier to get. There might even be something new.

I started with Ibrance - 1 year, Faslodex - 2 months, Xeloda - 1 year, Taxol - 1 year, Carboplatin - 2 months, now Trodelvy for 9 months. Next up is Enhertu and I'm told there are other good options in the queue.

I don't want to do a trial until I have exhausted the available treatments but that is my personal opinion.

[13plus in reply to Iwasborntodothis]

Oh thank you for this information. And I just wrote an essay-length new post about my current predicament 😂 The main problem is I have no faith in this new doctor. Some of the blunt things she has said to me, and telling me “no need to worry about moisturizing yet” (to avoid hfs), which after my weekend research is counter to all the advice from other top institutions! I

Miss my regular oncologist dearly

[Iwasborntodothis in reply to 13plus]

Wow that is not good advice. Mine would be to get ahead of it - moisturize and wear socks...how can this hurt?

[13plus in reply to Iwasborntodothis]

I started the twice a day ritual with shea butter despite her bad advice, and my feet are definitely in a better starting condition! Why not indeed! I also got some Voltarin gel to start with the Xeloda (if I still go that route). It showed a 75% decrease of getting hfs if used as a preventative in one study.

[1glajon]

I’m not on trodelvy yet but it’s going to be my next line of defense. Trying to understand when it’s given. Is it once a week or more than once week I read 21 days. Kind of confused. So glad you’re doing well. I’m on taxol right now and ibrance/arimidex for 3 years.

[Iwasborntodothis in reply to 1glajon]

sorry we are in the midst of moving houses (what was I thinking?) Trodelvy is 2 weeks on and one week off - one day per dose. Dose for me is about 45mins to an hour of pre-meds followed by 90 minutes of Trodelvy. They started with 3 hours for Trodelvy but reduced to 90 minutes after seeing how I tolerated it.

[1glajon in reply to Iwasborntodothis]

Thank you so much! I truly appreciate your response!