Pondering my options....

[Sunnydrinking]

Dear Ladies

I just thought I give you an update on my thinking.

I’m slowly coming to terms with things and starting to enjoy the research.

As you know, my lovely oncologist, Steph has given me three suggested treatment options.

Paclitaxel - via a Port (to be fitted) IV, 3 weeks on 1 week off.

Epirubicin - once weekly continuous or 3 weekly

Vinorelbine - oral day 1 & day 8 - 3 weekly cycle.

I’m currently considering my options and Steve and I will visit Steph again on Thursday.

I asked Steph if it was her or a loved one what would she opt for and she said Taxol as it has a good record on liver mets.

I’m torn between taxol or the Vinorelbine.

In a nutshell, I’ve never had IV chemo and I’m fearful of it. I don’t want to look like I have cancer and lose my hair and I’m even more fearful of the anti-sickness steroids that make you eat like a horse, not sleep and develop a round puffy face.... I’m already very overweight .... I’m also fearful of at least weekly hospital visits, especially during COVID.

I think the oral option of Vinorelbine would probably give me a better quality of life but would it attack the liver mets as well as taxol?

Should I seek a 2nd opinion at the Royal Marsden? Could I try and push to try albemiciclib (not yet approved on NHS but Lily fund may help...)

Jo xx

[stardust1965]

Hi Jo, I’m still on my first line of treatment and haven’t had to face what you are going through. I am sorry I can’t therefore offer any option or advice. But I did get a second opinion from the Royal Marsden in Sutton when I was first diagnosed de novo. It was extremely helpful if only to reassure me I was in good hands with my oncologist. Pre Covid I had been to a few Breast Cancer Now meetings where the guest speakers were from the Royal Marsden. They are an impressive bunch and I’m sure they will arm you further with the knowledge to make your decision. They may also be able to advise you on any other options/trials available to you. BTW I was nervous about telling my onc I was going for a second opinion but she welcomed it and was supportive of my decision to seek a second opinion. Vicki x

[Sunnydrinking]

Hi Vicki

Thanks for your comments.

I know how amazing the Royal Marsden are as my late husband and I sought a 2nd option from them when he had sarcoma. I know the Royal Marsden are also still prescribing some patients albemiciclib/verzenio that I would really prefer to try next. I know of a few ladies who also have liver mets who are doing ok on this.... Perhaps I’ll have to fund this myself ....

I’m still pondering and I haven’t slept much the last two nights! I so wish I could have stayed on Xeloda longer....

It’s just the timing is so not good for me, as we’ve been locked down for so long and we have booked & paid for two holidays for May, here in the UK that I’m so looking forward to. I’m also desperate to stay with my younger sister who lost her husband to covid last year, just after losing our mum.

I know they would try & work round holidays .... but now thinking trying the oral chemo option that I feel very grateful to be offered, would be easier for now & then if that didn’t work I would have to try IV taxol .....

I’m in a right pickle and can’t think of anything else ...

Jo xx

[Hidden in reply to Sunnydrinking]

Hi JoI am so sorry you are going through so much turmoil, but it does sound like you know in your heart what treatment you would like to try first so you are getting there.

Quality of life is of the utmost importance to many of us and I agree with you, as I like to keep my life as normal as possible which helps me cope with this disease.

Sorry I can’t offer any sage advice, but please know I am sending you every positive vibes I can to help you through this decision.

Clare

[stardust1965 in reply to Sunnydrinking]

Jo, I’ve only just seen your reply. I am sorry you are going through this now especially with all the lovely plans you have been looking forward to after being locked down and after the impact Covid has had on your family.I can see your logic behind trying Verzenio first then switching treatments if that does work for you. Would it help if you spoke to your onc again, or to your BC nurse or to the Royal Marsden? There are also Cancer helplines like Macmillan and Breast Care Now who you can talk to. When making big decisions I sometimes over think things until I can’t think straight. Then I talk to someone I have faith in and they provide the clarity I need. Just talking it through should help. Vicki

[MaryCos]

Hi Jo! Fear of chemo aside, your choices seems to be largely value-based. I have had chemo (as I started there even though I was diagnosed de novo and never should have started with chemo), so I am not frightened of it... already have my port... and, if any friend told me that outcomes are likely to be best for them if they do chemo... I'd encourage that choice over others. Point is, as a stranger that hopes we are becoming friends... I want you to be around a really long time.

So... I get it why you are considering options other than chemo as preferable to you. And I will support you in any decision that you make for yourself. This is yours to make. If it were ME? I'd do the chemo. But, again, we all need to weigh these things for ourselves. I am not as bothered by hair loss and other things that really are upsetting to many, if not most, women.

If you go the Vinorelbine route... and it isn't working, you could always switch to Taxol then, right? Seems to me, if your oncologist is putting these 3 choices on the table... she would never recommend something that is guaranteed or likely to NOT work for you.

I am all for 2nd and even 3rd opinions. Do what you need to do to make the best decision for yourself. And, while I don't have a lot of answers, I am a good listener. Reach out if you need me.

Cos

XOXO

[Topood]

I’ve had IV chemo twice in my life and never gained weight...and this most recent time, on docetaxol, didn’t lose very much hair! The port make it easy and all my chemo nurses have been SO nice....the first time I went through chemo 26 years ago a chemo nurse offered me her wedding dress for my ceremony! But do whatever you think is right for you....

[lynnhbtb]

I understand your concerns about IV chemotherapy. No one wants it. I had it at diagnosis 9 yrs ago and then with recurrence started again in 2018 and have been on it since, with some breaks for stable mets and just a chemo vacation. It's no picnic, but it's not that terrible. You don't have to lose your hair. I've done cold caps for 2 yrs and still have head hair but no other hair. This way I don't "look" like a cancer patient. I don't have the terrible steroid issue, except for a ruddy face the day after. Talk to your doc and tell her your concerns and maybe they can work with you on them. All the best to you. Lynn

[Lna21]

Hello JoI hear you

Ibrance and Letrozole stopped working for me, I have progression on my liver.

I have decided not to do a clinical trial with everolimus and Faslodex in pills (2 biopsies of liver needed to be performed and I did not want to) even though my oncologist was pushing for it,

I was also wondering about albemiciclib/verzenio but my doctor did not mention it.

Last “option” is Xeloda or IV chemo (that I know I don’t want for now: going every week at the hospital, side effects ...) How was Xeloda for you ? I am a little scared of it...

Anyway, like you I am not sure which way to go and I am looking for a second opinion out of state (I live in the US). Have you asked your doctor why she doesn’t offer albemiciclib/verzenio as an option ? I am going to ask mine but I am guessing it’s because it works like Ibrance (CDK inhibitor selective for CDK4 and CDK6). I will let you know about my findings.

Good luck to you !

Helen

[Sebina]

Hi Jo,

doctor suggested Vinorelbine to me and I was looking for information on this site and I see your post!

I hope you have decided which therapy you are going with and that the medicine is working for loooong time.

In your post you say that vinorelbine is oral chemotherapy! I didn’t really know that! My oncologist didn’t tell me and I received my first IV chemotherapy today! Are you sure this is Vinorelbine is chemotherapy? thank you and sorry that I’m questioning I’m just disappointed that my dr didn’t mention it to me!

XOXO

Sebina

[Sunnydrinking in reply to Sebina]

Hi Sabina

I opted for IV taxol in the end as I felt it would give me the best chance of attacking my liver mets!

Vinorelbine here in the UK can be given via IV or orally and I think the oral version is a fairly new option.

Very best wishes.

Jo xx

[Sebina in reply to Sunnydrinking]

Thank you Jo, that's interesting!

I’ve been to Abraxan but it doesn’t work for me! after the first scan cancer progressed! we'll see if I'll have more luck with Vinorelbine!

I use a cold cap and didn’t lose my hair on Abraxan!

Good luck 🍀💕