Join Us

We are 218,012 members in 84 forums discussing 160,846 topics.

Help with Abbreviations

Topic: NATALEE TRIAL

Forum: Stage II Breast Cancer — Meet, share and support others with Stage II Breast Cancer

Posted on: Mar 4, 2020 10:58AM

Mariadelpilar wrote:

My dr. wants me to join the Natalee trial which is based on the success of the Monaleesa trial for women with Stage 4 breast cancer. the drug is Kisqali (ribociclib) tablets. It was administered in 6 mg tablets for the Monaleesa trial and will be given in 4 mg for the Natalee trial. The problem I am having with it is the large percentage of side effects for the women in the Monaleesa trial. I am stage two, two nodes involved, and two unifocal tumors in the right breast. I just don't know if the benefits outweigh the risks. I did surgery, then chemo for 4 cycles, and i am going to start radiation for 7 weeks, followed by an aromatase inhibitor. If this treatment lowers my chances of recurrence to 10%? what am I really gaining other than more side effects? The purpose of the study is to see if this medication will work on lowering recurrance rate to women with early stage breast cancer.

I know that there are a lot of you out there pretty savy with research, so I would really appreciate your input.

thank you soooo much.


Dx 11/7/2019, DCIS/IDC, Right, 2cm, Stage IIB, Grade 2, 2/5 nodes, ER+/PR-, HER2- (FISH) Chemotherapy 12/26/2019 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy Whole-breast: Breast, Lymph nodes, Chest wall
Log in to post a reply

Page 1 of 1 (11 results)

Posts 1 - 11 (11 total)

Log in to post a reply

Mar 15, 2020 06:28PM sugarcactus wrote:

Hey Mariadelpilar,


This sounds like the study I joined about five months ago. I had stage II with a high chance of recurrence and a level 3 grade tumor. It was in one lymph node. I had a left mastectomy, then four rounds of chemo, then a ton of radiation. Then, I had a month or so off to recover before starting therapy. I decided to go all out because I figured I could scale back the medicine but couldn't join the study later. I am therefore doing ovarian suppression shots monthly (the needle is huge but actually doesn't really hurt), an AI once every day, and the 4mg Ribociclib. I also take Effexor and barely notice hot flashes.

Frankly, I'm surprised at how well I'm doing. The main side effects I have had are some fatigue, some vaginal dryness, and perhaps hair thinning, but I exercise about 45 min of cardio a day plus yoga and weights regularly. I still have a sex life. The weird thing is I now sleep about 8-9 hours a night at the minimum, which is weird as most people sleep less in menopause. I also got local vaginal estrogen to use which is not supposed to get into your bloodstream and cause problems. Also I am on the younger side of things, 42.

Also, you immunity can get lowered, which is the main draw back for me, especially with the virus outbreak. My immunity is lower than normal but my oncologist insists that the numbers look good still and I haven't been sick in over a year and a half (knock on wood). I am being very careful and self-quarantining right now as much as possible (but I also am a teacher and live in the middle of the Seattle outbreak!).


I am thankful for this decision as I had a high chance of recurrence and the longer I can push of recurrence, the more treatments there will hopefully be. The Kisquali is only for 3 years and then just the AI for up to 5 or maybe 10 years.


Hope that helps a little bit. :)



2a, ER+, PR+, HER2- Surgery 1/10/2018 Lymph node removal: Sentinel, Underarm/Axillary Dx 11/15/2018, IDC, Left, 3cm, Stage IIA, Grade 3, 1/25 nodes, ER+/PR+, HER2- Chemotherapy 3/1/2019 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy Whole-breast: Breast, Lymph nodes, Chest wall Hormonal Therapy Arimidex (anastrozole), Zoladex (goserelin)
Log in to post a reply

Mar 15, 2020 11:36PM Mariadelpilar wrote:

thank you for your reply, sugar cactus! I am having the exact treatment you had. I couldn’t have the onco type tests because I had two different tumors right next to each other. I will do the trial because my oncologist said I had a high probability of recurrence also. I’m so happy to hear you aren’t experiencing major side effects! I hope I have the same experience. Besides a couple of women on this site, I don’t know anyone who is on the trial.

Can you have your students use hand sanitizer after recess and after lunch to minimize your exposure to germs? I used to teach also and that was always a concern. I am also concerned about starting radiation in the next week or so and going to a dr s office every day during this virus outbreak. I had the regular flu just before my 4th round of chemo and was scared to death they would cancel it. So glad I’m done with that! Still have the port in.... can’t wait to get rid of it

My radiologist didn’t really explain why I’m getting 7 weeks of radiation. Most people get 5-6, right? How many weeks did you get? Did you get the regular radiation (photon) or the poton? ( I probably misspelled Both!)

Good luck to you. Stay safe, healthy, and happy.

Dx 11/7/2019, DCIS/IDC, Right, 2cm, Stage IIB, Grade 2, 2/5 nodes, ER+/PR-, HER2- (FISH) Chemotherapy 12/26/2019 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy Whole-breast: Breast, Lymph nodes, Chest wall
Log in to post a reply

Apr 23, 2020 05:59AM HOPE012119 wrote:

Hi! I’m on the trial. And I’ halfway thru the first year :)


Did you decide to join, Mariadelpilar?

Dx 1/21/2019, IDC, Right, 3cm, Stage IIA, Grade 2, 3/8 nodes, ER+/PR+, HER2- (IHC) Chemotherapy 2/27/2019 AC + T (Taxol)
Log in to post a reply

Apr 23, 2020 06:02PM Mariadelpilar wrote:

hi hope012119,

Thank you for responding, can you tell me if you’ve had side effects while on the trial? I’m especially worried about QT and lowered immune system.

Thank you!

Dx 11/7/2019, DCIS/IDC, Right, 2cm, Stage IIB, Grade 2, 2/5 nodes, ER+/PR-, HER2- (FISH) Chemotherapy 12/26/2019 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy Whole-breast: Breast, Lymph nodes, Chest wall
Log in to post a reply

Apr 23, 2020 09:07PM HOPE012119 wrote:

I have not had the QT prolongation SE which is a relief! They said all my ECG tests were ok. I should have asked specifics (Regarding what’s acceptable and where my reading fell in the range). But I haven’t for that issue. Mostly because it goes over my head.

My counts are low a lot. Especially as time has passed but then they bounce back up a bit. The neutropenia for me is not febrile neutropenia so that’s also a relief. I won’t lie, being immune suppressed is on my mind a lot lately. But I’m trying to be careful and hoping for the best.

I don’t know what my recurrence odds are beyond that generic 30% we all hear. I often wonder if it’s worth the risks especially during the current situation.

Can you enroll in the trial at your cancer treatment center? I had to go to another hospital

Dx 1/21/2019, IDC, Right, 3cm, Stage IIA, Grade 2, 3/8 nodes, ER+/PR+, HER2- (IHC) Chemotherapy 2/27/2019 AC + T (Taxol)
Log in to post a reply

Apr 24, 2020 07:59PM Georgia1 wrote:

Just thanking all of you for enrolling in a clinical trial. Hundreds, if not thousands, of women will thank you in the future. Your participation is so important!

Cancer touched my breast so I kicked its ass. Dx 9/3/2017, ILC/IDC, Right, <1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- Dx 10/10/2017, LCIS, Right, 0/1 nodes Surgery 10/10/2017 Lumpectomy; Lymph node removal: Right, Sentinel Radiation Therapy 11/27/2017 Whole-breast: Breast Hormonal Therapy 1/2/2018 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
Log in to post a reply

Apr 25, 2020 02:58PM HOPE012119 wrote:

thank you Georgia1!

Dx 1/21/2019, IDC, Right, 3cm, Stage IIA, Grade 2, 3/8 nodes, ER+/PR+, HER2- (IHC) Chemotherapy 2/27/2019 AC + T (Taxol)
Log in to post a reply

Apr 25, 2020 05:51PM - edited Apr 25, 2020 05:56PM by Mariadelpilar

thank you Hope12119,

I am thinking about doing the trial and see how I do with my blood count. Like you , I'm worried about a suppressed immune system, but I also don't want a recurrence! From all the research I've done seems like stage 2 breast cancer is pretty curable even with node involvement, and since I didn't have the oncotype test, I don't know how my oncologist knows my recurrence rate? By the way, can I ask you how many rounds of chemo you had? I had 4 but when I told my dr that I may not join the trial, my dr said that if she knew I wasn't going to join the trial she would have given me 6 rounds of chemo! This sounded to me like she wanted to punish me😞thank you for writing back.

Ps. 30% recurrence rate is only if you have surgery only accosting my Dr.Did you have radiation? My oncologist and radiologist said that chemo lowers the chances to 15% and if you add radiation it goes down to 6%!

Dx 11/7/2019, DCIS/IDC, Right, 2cm, Stage IIB, Grade 2, 2/5 nodes, ER+/PR-, HER2- (FISH) Chemotherapy 12/26/2019 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy Whole-breast: Breast, Lymph nodes, Chest wall
Log in to post a reply

Apr 25, 2020 07:14PM - edited Apr 25, 2020 07:18PM by HOPE012119

Hi Maria,

I did 8 rounds of chemo (dose dense AC-T) before surgery. I didn't have a complete response (not surprising for hormone positive). I had the bilateral mastectomy and had to get the axillary lymph node dissection after two nodes that looked like they had resolved during chemo turned out to be positive. I did 5 weeks of radiation. After I finished rads, the radiation Onc shared that 6% figure with me so when the medical Onc suggested doing the Natalee trial after I completed all those months of treatment, I was like why would I do that when my risk for recurrence is so low and I've already thrown everything including the kitchen sink at the disease. The medical Onc said the 6% was for local recurrence but the systemic recurrence risk is around 30%. I'm not sure if that figure was specific to me or in general perhaps? At that point I had a few tears! First and only time during an appointment. Thank you for explaining how lowering the risk thru treatment works! That makes sense! So maybe that 30% figure was specific to me. I was too upset at the time to ask clarifying questions about the data and was thrown off by the prospect of doing the trial and all the unknowns that went with it. It's so much to process! What kind of chemo did you do? Is there a research nurse you can speak with about the trial? The research nurse has been so helpful to me. I'm happy I'm enrolled. The time between hearing about the tria and enrolling seemed to pass quickly. I wasn't sure which arm I wanted to be randomized to but in the end I was relieved I was randomized to the control arm and got the drug. If you're interested there's a Facebook group with a few people interested/enrolled in the trial. You should be able to search with the name of the trial to find the group.

I would recommend enrolling in the trial! I understand it's a difficult decision. And please let me know if you have more questions.

take care,

Hope

Dx 1/21/2019, IDC, Right, 3cm, Stage IIA, Grade 2, 3/8 nodes, ER+/PR+, HER2- (IHC) Chemotherapy 2/27/2019 AC + T (Taxol)
Log in to post a reply

Apr 26, 2020 12:22AM - edited Apr 26, 2020 01:25AM by Mariadelpilar

I did the same chemo as you. What does dose dense mean? I did 4 rounds every 3 weeks. I did 7 weeks of radiation!!!

I would clarify with your doctor the recurrence rate.The 30 % recurrence rate doesn't seem accurate. The chemo is supposed to take that percentage way down, and then the radiation. I found this info in THE BREAST BOOK by Susan Love and also through other research online. I don't have an onco nurse. What state are you in?

Did you have the oncotype test?

Dx 11/7/2019, DCIS/IDC, Right, 2cm, Stage IIB, Grade 2, 2/5 nodes, ER+/PR-, HER2- (FISH) Chemotherapy 12/26/2019 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy Whole-breast: Breast, Lymph nodes, Chest wall
Log in to post a reply

Apr 27, 2020 08:07PM HOPE012119 wrote:

Hi! Dose dense is giving In less time than the standard time. I had 8 infusions over the course of 16 weeks, so every 2 weeks. Here’s an explanation:

https://www.breastcancer.org/research-news/dose-dense-chemo-improves-survival

The research nurse works at the hospital where I enrolled in the clinical trial at. She’s sohelpful!

I didn’t have the oncotype test done.

I will check out that book! Thanks so much for the suggestion:)

Dx 1/21/2019, IDC, Right, 3cm, Stage IIA, Grade 2, 3/8 nodes, ER+/PR+, HER2- (IHC) Chemotherapy 2/27/2019 AC + T (Taxol)

Page 1 of 1 (11 results)