Petscan results not great. - SHARE Metastatic ...

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Petscan results not great.

Jerseygirl45 profile image

I received my petscan on patient portal. Have not seen oncologist about it but we do get used to reading them. Mine still shows progression. Lucky it seems to be in bones only. My oncologist wants to go to Taxol IV next. I was going to try verzenio first but now I can see that hormone treatments are no longer working. Tumor markers have been rising since January.

My question is treatment can be once a week for twelve weeks or once every third week for 6 treatments.

Taxol website says every week has lower dose less side effects, longer life span than the every three week plan. Down side is going every week for 12 weeks.

I know some of you have had the treatments. Could you help me on which protocol you had or recommend.

I am thinking should I just get it over with quicker by doing every week?

44 Replies

I had 12 weeks when first diagnosed. It was not bad. Side effects besides losing hair were having to go the the bathroom within 2 hours of treatment. I have very faint Neuropathy which is mostly not noticeable. It worked well for my lungs Mets. I would do it again. Good luck.

Jerseygirl45 profile image
Jerseygirl45 in reply to

Thanks, I was thinking just get it over with. But I will wait until Jan. Were the treatments 5 hrs each. Are you now on hormone treatment?

I have an appointment next week to get wig, hat,s scarf whatever I need. I want to be ready in case I don't feel good during treatment.

it's been 4 1/2 years. It wasn't 5 hours. I forget how long, but that seems really long. I am on Ibrance and faslodex. Started on letrozole, Ibrance added 6 most latter. Recently switched from letrozole to faslodex for small progression in some lung mets. Less discomfort on faslodex except last week had a less skilled nurse and have a bruise on one cheek and a lump on the other side. If I see her again, I'll give her some tips (I'm a nurse, but I rarely let them know and don't usually interfere).

What on earth happened? Oh my goodness. Are you ER/PR+ / HER- ?

in reply to Halfpint2

Yes. Do you mean what happened during the shots? I think her hand was not steady on the first one and I got a bruise. On the other side I think she didn’t choose the best place and injected it too fast. I have a knot there. Yes I am Er/or+/her- Up to this point I’ve had good shots and it hasn’t bothered me much. I also asked her to warm it up. Maybe it wasn’t very warm. Thank goodness I am not small.

Halfpint2 profile image
Halfpint2 in reply to

Yes. Thank you for clarifying.

LynnFish profile image
LynnFish in reply to nstonerocks

Hi Nstonerocks -

I was interested to read about your treatment because mine is essentially the same, i.e. I was on letrezole + Ibrace for 40 months then what was apparently progression led to my switching to Faslodex (while remaining on Ibrance). ` I have a couple of questions about this, if you don't mind...

...First, it was my understanding that this is not a standard protocol, do you know if this is true? I had to jump through hoops and feel lucky that one of my two oncologists was willing to keep me on the Ibrance as I moved on to "second line treatment"...Was this not your experience? One of the reasons why I ask is because I need a new second oncologist (My doc at MSK moved overseas, so at this point I just have local Dallas doc) but have been hesitant to find one because I think they won't "approve" of my current treatment...?

Also, a treatment related question...I'm two months in to the Faslodex/Ibrance combo and had a worrisome increase in tumor markers in last week's labs, so am worried (doc seems concerned, but she typically worries more than I do...). I see the PFS charts on this combo and the curves are steep....lots/most(?) women seem to fall off within a few months which tells me that it simply did not work...so that's what I'm worried about...my question for you is, do you have any experience or knowledge re: does it "kick in" after a couple of months or should it have kicked in already..

Thanks so much,

Lynn

nstonerocks profile image
nstonerocks in reply to LynnFish

Hi Lynn

I’m afraid I can’t answer your questions. I have trusted my oncologist to make decisions and don’t research much. I’ve been on Faslodex since September and am due to see her December at which point I’ll know her plan for scans etc. she does not follow tumor markers closely. I go to NYU. When I was first diagnosed my oncologist requested the breast tumor be removed (I was mbc from start). Not every doctor does this. I had rounds of radiation and IV chemo (Abraxane). I don’t do well knowing too much and so far she has been on target. I can let you know the results of my December visit.

Sorry about your bruises! I am a registered nurse and rarely share that with health care providers. It either makes them nervous or they assume I know everything and don't provide teaching or education. On rare occasions they might be too distant or hesitant. Better to keep it to myself unless it just comes out.

Yeah I didn’t tell this one I was a nurse. Didn’t want her to get nervous on top of the rest of it. Once in a while I let them know. But you’re right, it’s better not to.

I had taxol when first diagnosed for 12 weeks. I started to lose my hair after the 3rd treatment no other side effects to speak of. It worked good for me.

Bibfoo277 profile image
Bibfoo277 in reply to Juneday

That awesome 👏🏼 🤗 hugs

Jerseygirl45 profile image
Jerseygirl45 in reply to Juneday

My oncologist called and wants to see me tomorrow. I guess to go over petscan results. I am going to agree to the Taxol and hope I can wait until after holiday. I have plans to be with all 4 of my kids and 7 grand children. I do not want to be sick and ruin holiday. I hope my treatment goes as well as yours. Not to many side effects. I guess we will see tomorrow.

Great news that your appointment was moved up. Please keep us updated what the plan is after you return.

Your holiday will certainly be full with all your family and I hope you are able to enjoy without being ill. Fingers crossed for a plan that works best.

Sandra

So sorry about the scan results. I’m

Not familiar with taxol regimen yet. Ultimately, trust your instincts and what feels right in your gut. ❤️

So sorry to hear ypour scan results! Praying new treatment works! I had taxol for initial diagnosis as one of my treatmants. Helped put me in remission for almost 5 years. Think about it and as someone else said go with your gut! Love, Marianne

That sounds great. Just so upset about losing hair. I need to get over it😂

Losing my hair was the hardest part for me too! I understand.

I am so sorry to hear this! So praying and hoping the change in medication will get you stable 🙏🙏❤️

Thank you I hope so too🙏

Hi Jerseygirl. I'm so sorry to hear your scan results weren't what you hoped. I don't have any experience to help you with your decision but just wanted to let you know I am thinking of you. Talk with your oncologist and get their opinion, weight the pros & cons and ultimately as others have said go with your gut feeling.

Good luck with your wig/hat/scarf fitting next week. I'm sure you will rock whatever you choose. Take care. Sending positive vibes your way.

Sandra

Thank you, I guess we are all vain when it comes to our hair.

I haven't been on Taxol yet. My oncologist tells me drugs only last so long and then the cancer outsmarts the chemo and you have to change drugs. I have been on Ibrance 20 months. I dread having to change. Let us know how you do with the new chemo. Blessings, Hannah

Jerseygirl45 profile image
Jerseygirl45 in reply to hdhonda

I know that's the problem. I was diagnosed 2016 almost 2 1/2 yrs so have been through most meds. So chemo next.

SusieIM profile image
SusieIM in reply to Jerseygirl45

I hear you, my doc gave me the options and eventually chemo.

If you go with taxol every week, I'm not sure if you will be allowed to have nuelasta to keep your white count up. I had carboplatin and taxol every 3 weeks and was given neulasta. My white counts stayed up and I didn't have problems with getting infections.

Jerseygirl45 profile image
Jerseygirl45 in reply to Mcap

I will be sure to ask her about that at next visit. I just got over pneumonia from the Afinitor and do not want any more infections.

So sorry about your scan results. I am on Taxol and Gemzar currently and have 2 rounds. On for two weeks, then off one week. It's been challenging. I was on a very strong chemo regimen when I was originally diagnosed 6 years ago and it's not quite as strong as that, but it does wipe me out.

There are ways to keep your hair. Look up penguin cold caps. Some infusion centers even have cold caps for their chemo patients. I lost my hair the first time and really didn't want to go through that again. So far, so good.

I wish you all the best.

hugs,

Lynn

Thank you I will ask about that. Would love not to lose hair.

I am sorry about the results of your petscan. My results were mixed also, about five weeks ago. Doc is concerned since the present meds are not as effective as she wants it to be, suggested new treatment. Started on fulvestrant by injection every two weeks twice, then every four weeks. I'll probably have another petscan done in about two months, then see if it's helping. So far the side effects are not too bad, feel the usual tiredness, hair thinning. Sending a virtual hug to you, keep us posted.

Jerseygirl45 profile image
Jerseygirl45 in reply to SusieIM

Thank you!

I’m preparing mentally for what your all going through as I know eventually cancer won’t be fooled by Ibrance; & right now it appears the next step is fulvesteant).

Thank you all for sharing.

Have yet to be on chemo and I’m hoping immunotherapy gets the “fast track” approval so it could ? Become 1st line of treatment. & also hope our Insurances will pay!

Jerseygirl45,

Good luck with the new protocol, I know nothing of Taxol, sorry. Immunotherapy is right around the corner for us. 🙏

Going wig shopping next week ..on round 5 of Ibrance and Letrozole as this has done a number on my already thin fine hair. Stay strong I’m rooting for you. ❤️

Jerseygirl45 profile image
Jerseygirl45 in reply to Tam-56

Thank you, I am going wig shopping this week

I was on Taxol my first go around and I had extreme leg pain. I was getting it once a week.

They were going to cut the dose and spread it out over a longer period and I said no because I just wanted to get it over with so I put up with the discomfort.

That's what I was thinking. Just get it over with. I am trying to get my head set with it, it is hard. I will start after the holiday. Thank you for the info.

I am so sorry about your scan results. Loosing the hair is tough too. 3 days After my first IV Chemo (Adriamycin/Cytoxin) in 2000 my hair started falling out in clumps. I took control and shaved my head. Hair eventually grew back, thicker and much darker and had remained darker and thicker. I was 43 then. I'm now 62 and still don't have grey hair! However, since starting the Ibrance/Letrozole my hair has thinned considerably. Good luck to you. Blessings.

Hi Sister3nkc, when were you diagnosed with Mets?

I was diagnosed July Of 2016. Since my tumor markers keep going up and petscan shows progression I will start IV Chemo in January.

I think I’ve told you. My initial dx was stage 2 in April 2016. Tamoxifen stopped working January 2018. Ibrance/letrozole failed after 4 months. And the afinitor/exemestane failed after 3 months.

My dr was out of office for my appt so it was a fill in. He said it was between fulvestrant or xeloda. I’ve read good things about fulvestrant but I think it’s hormone blocker too. So, he recommended fulvestrant but I’m

Thinking “why another hormone med?”

I haven’t had chemo yet...then again, I

Haven’t had “progression free” status. So I’m leaning towards xeloda.

Seems we have a similar path. I’m 47 years old now. 44 at stage 2 dx, 46 for the MBC dx.

My doctor said I could try the verzenio for a few months. But it just seems the hormonal drugs are just not stopping it. She said I did get something from the Afinitor as the pet scan showed some progressed and some were gone. But it's like playing Russian roulette at this point. I want to stop it before it spreads to my lungs or liver. Believe me I am not looking forward to losing my hair but I need it to stop spreading. So I guess this is the way. She said she will make it as easy as she can.

Hi. I am in the same position. My markers have gone up considerably, and I like you, have not had any success with hormone-based treatment. I am going to try Taxol too. I will be on it as long as I can tolerate it and it works. I have mets to my bones and liver. I am getting a scan next week to see how much worse my liver is. I wish all of you so many blessings. This is a hard road that we have to travel. All my best to you, Jerseygirl. I hope the cancer doesn't progress beyond your bones. Some people live a long time with only bone mets.

Thank you and good luck to you. Are you doing the every week or every 3 weeks?

Don't forget to find a cancer care in you area they will give you a free wig.

HI, taxol every week is OK at first. Then after about the 9th treatment, the side effects were really affecting me. You can do it though! Good luck!

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