not so great Petscan

[jltorcz]

Friday I had my first Petscan after two cycles of Ibrance and one on Kisqali. I was really hoping for all good results. Unfortunately, it was a mixed bag. My metastasis is my my lungs and there were three spots, two were biopsies and one too small was just assumed to be my breast cancer cells.

Well the biopsies spots seem a little better, but the small nodule has gotten about .3cm larger and I have a new one on the left lung, I guess both are still too small to biopsy.

The plan is to continue on Kisqali for two more cycles, once my neutrophils rise above.93, hopefully next week, and have another Petscan in May, 2 months, instead of 3.

I guess if those are growing we need a new line of treatment which I know many of you have gone thru, but I am pretty down and so frustrated. Reading all the posts, I feel unworthy to complain, when I her of the long and difficult journeys many of you have been thru. But I guess I could use a little positive feedback.

[MSWife]

I think you’re pretty early treatment-wise to see much improvement - try not to get discouraged, many people say don’t scan until 4-6 months to allow meds to take effect. The last thing you want to do is stop this treatment too early.

Try and hang in there!

[Nocillo]

Don’t worry too much. It sounds like you haven’t been on the current treatment for very long. You’re allowed to feel down. Everyone has those days. You’ll get your mojo back and continue the journey. Wishing you the best!

[Lilywallytootsie]

I agree that it is to early. Why did your oncologist do a Pet Scan, rather than a Cat Scan. Cat Scans give a better picture. Routine scans should be at least three months after treatment starts. The drugs need time to work. My Mets are in my lungs too. It's hard to wait and a Cat Scan will give them a closer look. Best wishes for good results. Blessings, Hannah

[jltorcz in reply to Lilywallytootsie]

I think he is following the Kisqali protocol . But I could enquire.

[LaliChicago in reply to jltorcz]

I agree with what others have said, it’s too soon to see significant improvements. Easier said than done, but try to relax and give yourself some grace. This is totally the place to voice your concerns. With respect to the pet scan versus the CT scan, I agree with you. When I switched from ibrance to kisqali, I had pet scans initially as I am part of a study and this is the requirement. They were also every two months at the start.

[NPmary]

I agree with everything that's been said already. It's oh so scary early on. There is every reason to believe your treatment is going to work well and potentially for years.It can be really hard to believe that especially when it's so early in treatment - but it's true.

I wish you many, many good days and good outcomes. Glad you found us. This is a safe place to share, learn, emote. 🪷"

[Dragonfighter]

I agree , it is still early days for you. One of the first things my oncologist told me was that things could get worse before they get better. Wishing you well.

[Sharon0122]

Never give up hope! We’re all here for you. There is always light at the end of the tunnel and trust your instincts. You are your own advocate and it’s your body. Wishing you the best!

[Elle713]

I do agree it is too soon to assess if treatment is working. However, your disappointment is noted and acknowledged. This is a roller coaster ride and we must acknowledge the feelings that come with the dips as well. Keep the faith.

[love2golfwell]

I'm sorry you did not get the results you hoped for but I am hoping that the Kisqali will work and that your next scan will be good. Sending you hugs and prayers.

[NeverOutOfTheFight]

Hang in there. There are still tools in the toolbox to help. A pivot in treatment isn't the end of the world. Just have to keep going...there are so many new things coming for us. Don't let the worry rob this time from you, try to use it as motivation to live your life. Not letting this diseases control us is the best revenge. Prayers and good vibes. You got this. Now, get out there and love on your people.

[Tanyateresa]

Hi there!! Sorry to hear your news - I am in a similar position - I had progression in my bones after scarcely 3 months of treatment. However in my case they decided to discontinue Verzenio and Fulvestrant and put me on chemo which I'm about to start. I am downhearted as I think that as Dragonfighter said things take a while to settle and take effect. . Wishing you all the best.

[Suite1000]

I also agree it's too early. At my second CT scan after starting Ibrance the radiologist asked where I was in my treatment plan. I think he was concerned at all the hot spots. This is because tumors can flare (get bigger) at first. None of mine have shrunk but I am stable and tumor markers much lower. I've learned from this site that often we worry prematurely. I was very depressed that my tumors haven't shrunk but I'm stable. It's hard, but try to be patient. It seems there are many different journeys to stability.

[mariootsi]

Seems like they should wait longer til next scan.

[jltorcz]

What a wonderful site this is. It is so supportive and informative. Thank you all for your responses.

[TammyCross]

Almost exactly what happened to me! I started Kisqali (with exemestane, which I had been on for 6 months) two months ago. I had a scan, a PET/CT, and for the first time on all of my previous treatments, I had multiple mets, all around my lungs. The other treatments I have been on showed improvement right away, and when they failed, I had one or two small mets. Now there are five spots of concern. One bone met resolved.

My onc says too soon to tell, and will do another scan sooner than usual, once she thinks we can tell if Kisqali is working. I am discouraged and scared. I haven't had this much going on since I was initially diagnosed. And not around the lung (left lung only). I am not that hopeful that it will turn around. Yet can't help wishing, and thinking about something I read that with Kisqali, in particular, it can take months to be effective and may look worse before it looks better. In the meantime, one of the new tumors is pressing on my lung and caused a partial collapse. I think the shortness of breath is getting worse, and infer that the one tumor that is causing the atelectasis (2.2 cm on the scan two weeks ago) is growing. I am seeing a pulmonologist, but what is the point of having a procedure to open it up if the tumor is just going to collapse it again?

Glad to see all the encouraging responses you received, yet...My next treatment will be oral chemo (Taxol) as I have run through all the estrogen suppressor and CDK4/6 inhibitor combos.

It is puzzling that you are on two CDK4/6 inhibitors at the same time -- Ibrance and Kisqali. I have never heard of that and it doesn't make sense. Usually Ibrance or Kisqali is paired with fulvestrant, anastrozole, letrozole, or exemestane.

[jltorcz in reply to TammyCross]

No I am only in n the Kisqali. Dr. Switched right away since we had just begun treatment.

[TammyCross in reply to jltorcz]

Oh, I see. Misread it: 2 cycles of Ibrance and one of Kisqali.

Are you also on an estrogen inhibitor? Are you not ER+?

[jltorcz in reply to TammyCross]

Yes on Letrozole.

[JMPhD]

Hi jltorcz,

Yes, 1 treatment cycle is way too early to evaluate (as Ms Wife says) and there’s a reason it’s a minimum of 3 months before scans are done to evaluate. I know an excellent oncologist who had been involved in early research on Kisquali (ribociclib), impressed most by it’s results of the cdk 4/6 inhibitors and found strong evidence of efficacy of binding. Hoping you have excellent results!

Please also remember there are many options for treatment nowadays. To such an extent, that some oncologists are calling it a chronic manageable disease.

🍀 🙏🫂 JM