I need hope: I haven’t posted in awhile... - SHARE Metastatic ...

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I need hope

kduck profile image
31 Replies

I haven’t posted in awhile, I’m currently on taxotere due to liver mets. I have 2 treatments left and I need to find something to keep me here for my children. I have done falsodex and letozole along with lupron and xgeve. My onc says exemestane is next by in self but I’m thinking why if I have failed one AI already. I know that there are lots of more treatments but I feel like I’m not getting the best care. I also did foundation one testing but results not back. Onc used my last pathologist report to do the foundation one. I ask myself why that was 2 years ago. I just want to be with my kids as long as I can. He never talked about the other cdk 4/6. I’m just lost, confused, scared and not willing to give up!

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31 Replies
Iwasborntodothis profile image
Iwasborntodothis

We are here for you and I want to give some sage advice but I don’t have any right now except this - I looked at your old posts….3 years WOW! Beautiful kids! And here you are still with them…. I will keep you in my prayers 🙏

kduck profile image
kduck in reply to Iwasborntodothis

Thanks

Mary115 profile image
Mary115

Oh kduck I am so sorry you are experiencing the confusion which comes from conflicting presentation concerning diagnosis and medication. It is just such a hard place to be. The beauty of your statement that you just want to be with your kids is both sad and courageous to read . I am searching for a health care advocate which could be a counselor who knows about cancer. I need more than self advocacy to help. Fortunately, I have found a sounding board and I have an appointment with my primary asking her to help me with the multi-diagnosis dilemma. I found this description of Cancer Counseling helpful. Perhaps it will also help you in your search. I do not know the organization and cannot recommend it but the list of what a counselor can help with, helped me.

cancer.net/coping-with-canc...

This is where I need help since I do not have a health care team as such but a variety of individual Doctors. I feel we are on our way to finding the resources we need:

A counselor can also help you talk with the people around you. For example, they can help you Communicate clearly with your health care team

kduck profile image
kduck in reply to Mary115

Info was greatly appreciated, thanks

Pbsoup profile image
Pbsoup

I think some of the major cancer centers like Dana Farber and MD Anderson do remote second opinions. Can you try that? Or even travel to a nearby cancer center…

It sounds like you might need another set of eyes on the situation. Have you never tried the CDK 4/6? Did you ask why he isn’t considering that? What about Xeloda? There may be valid reasons. But you have a right to completely understand.

It also does seem odd to use 2 year old tissue for foundation one testing. I thought you used new samples in case the cancer has mutated. That’s what I was told by both my old and new oncologist. It’s part of the point of the test…

You should ask him why you didn’t do a new biopsy.

I just did a blood dna test ( a a biopsy) which didn’t show any mutations that were useful, but it confirmed I’m still ER+ which is what we were trying to find out. So that’s another less invasive option

Defiantly ask tons of questions—don’t be afraid of being annoying. And consider a second opinion. If your gut says you’re not getting the best care you should listen.

kduck profile image
kduck in reply to Pbsoup

I tried Ibrance lowered my wbc, but have not tried the other two

Gingerann1 profile image
Gingerann1 in reply to Pbsoup

I agree with you pbsoup. After my first diagnosis in 2013 and subsequent remission for 7 years I had retired and moved from the DC area to the NC coast when I was diagnosed in 2020 with MBC. I recognized pretty quickly that I was not getting the care I had come to know and expect and followed my gut to a second opinion. It has only been 6 months but is like night and day. This is too important to hope her Onc is getting it right. Having the best treatment team and a positive attitude it half the battle won.

MyMiracle13 profile image
MyMiracle13

Hi. I’m sorry you are in this situation. Usually Exemestane is paired with Everolimus (Affinitor). When I was having my brain radiation, my oncologist put me on Exemestane only because he didn’t want me to have radiation and chemo burden. He did say it is usually paired with Affinitor (Everolimus) but since the side effects of Affinitor are sometimes harsh, he didn’t put me on that one. Exemestane on its own did not work for me so he put me on Xeloda which thank God is still working for me.

kduck profile image
kduck in reply to MyMiracle13

Thanks

Justjade profile image
Justjade

I really think you need a second opinion quite quickly. Foundation one results should take around 3 weeks to come back. Ask for a copy of those results. If nothing is forthcoming a d you have the funds get one done privately with oncologica. It’s a very easy process and they explain everything in detail. Do not worry about upsetting anyone by getting a second opinion Drs are quite used to it. X

kduck profile image
kduck in reply to Justjade

Thanks

Winner123 profile image
Winner123

Hi. Really sorry to hear your distress. Have you considered or been offered immunotherapy or Ablation of any tumors? Are you working on diet and nutrition to remove the foods that make the cancer grow by feeding it? (Sugar, carbs, caffine ect). I find it really difficult to offer advice as it's a complicated subject but there are basics that could help? Move your body to a alkaline state, cancer won't thrive in an alkaline body. Please feel free to ask if I can help any further. XX ❤️

kduck profile image
kduck in reply to Winner123

Please send what you can to help with my diet

Winner123 profile image
Winner123 in reply to kduck

What are you currently doing please?

Jpl5036608 profile image
Jpl5036608

My daughter is stage 4 her2+ but after taxotere, carboplatin, herceptin and perjeta and now continuing herceptin every three weeks, she is 20

months post diagnosis and no evidence of disease not even the one tumor in the liver. Do not give up your faith and hope!

kduck profile image
kduck in reply to Jpl5036608

Thanks

Jewelyn profile image
Jewelyn

Get another opinion or as many as you need. I don’t fool around if you have donuts listen to them when I was first diagnosed with breast cancer 28 yrs ago I saw 4 oncologists before making a decision 3 different treatment options were presented to me. Do your research. It’s hard but do it

kduck profile image
kduck in reply to Jewelyn

Thanks

PJBinMI profile image
PJBinMI

Can you have a virtual appt with the onc you saw at MDAnderson? I don't know if all the Comprehensive Cancer Centers offer those, but I have been able to do that, both with the bc onc and a cardiologist who specializes in cancer patients. One thing for you to pay attention to is your liver function tests. Our livers are important organs and also the only organ that can replace itself! (For example, if one of us had to have part of our liver removed, it would start regrowing the part removed! Pretty amazing!) I sure understand your desire to be here for your children! I want that too, and my daughter and step-daughters range in age from 41 to 55! If I were in your shoes, I would also ask to have that Foundation One testing done with a current sample of the cancer cells. One thing I have often heard about this kind of testing is that for most of us, it will show what meds won't work for us and aren't worth trying, rather than pointing us towards med/meds that are likely to work well for us, but it does show that sometimes and is certainly worth doing. Taxotere and Xeloda are the chemotherapy drugs that I have most often heard of being prescribed as first chemo (as opposed to hormonal treatment) for those of us with an E + bc.

I'm a long termer with mbc, E+, her2neu -, bone mets from the get go, first diagnosed at stage 4 seventeen years ago! That was before meds like Ibrance and Affinitor. Also before Xgeva. I got nearly 5 years from Letrozole, over 9 years from Faslodex, and now have been on Exemestane for about 3 1/2 years. I too was a bit surprised when that was the next med prescribed for me, but it's done a good job for me. I am probably going to change meds soon--it will depend alot on my next scans and blood work. I've done well for so long and have had a chance to become comfortable with the idea of dying, both the process and the being dead parts. That took time and effort, and I have no children depending on me, though I know my husband will miss me alot as will other family members, but none will be devastated, and we have all learned how to talk about it and even joke about it at times.

Alot of cancer centers and clinics have counseling available for patients' children, and yours might find that helpful. And you can reach out about how best to mother them while you have this lousy cancer!

My own mother lost her mother (and her only sibling, her older and pregnant sister) when she was just 18. That was really a blow to her and her father. She was able to be a great mother to me and my brothers, and told family stories that made me feel as though I knew her mom and sister and brother-in-law.

One of the few good things about this cancer is that we and our families know how it will end and our deaths will not be a total surprise. We have a chance to say what needs to be said, to express our ongoing love and talk about how much we don't want to leave........

You do have some things going for you! A positive response to previous treatments, even if not for as long as you'd hope. Second opinion at MDAnderson! (HUGE) And the liver's ability to fix itself. If your liver function tests are good, that's also a huge plus! (if they aren't, that's not necessarily very bad news!)

Do know that we are here for you and will "listen" to you, and will pass along any wisdom we have gained!

Sending love, cyber hugs, and healing thoughts and prayers........

kduck profile image
kduck in reply to PJBinMI

Thanks

diamags profile image
diamags

If possible, I would get a second opinion. At a major cancer institution would be good, if you can do that. If not, try somewhere near you that has a good reputation.

kduck profile image
kduck in reply to diamags

Thanks

Andibo profile image
Andibo

I am sending you big hugs and much love. I agree with others who feel that a second opinion is very much needed. If it only serves you to make you feel you are getting the best care and options, then it will be worth it.

kduck profile image
kduck in reply to Andibo

Thanks

Djd60 profile image
Djd60

I went to the Mayo Clinic in Jacksonville and seen an Oncologist by the name of Pooji Advani, she is wonderful, I even did zoom calls , maybe you should try another opinion because this is your life , this is what I did just to make sure I was on the right treatment plan and what was best for me , this is just what I did but I also have a great local Oncologist I am seeing for MBC and also have kids, mine are grown but want to also be here as long as I can like most of us feel the same way about how precious life is , good luck and hope this helps !

kduck profile image
kduck in reply to Djd60

Thanks, could you send me info on Mayo Clinic in Jacksonville

Djd60 profile image
Djd60 in reply to kduck

Hi, yes I got a second opinion from the Mayo Clinic in Jacksonville, Dr Pooji Advani is who I seen, and also had a few zoom sessions set up with her, she explains everything, I had all my records from the Hospital and the Doctors I see faxed over to them so she could review everything before hand, now if I have any follow up questions I will contact them , the number I call there is (904)956-8987, I loved her the minute I met her in her office at the Mayo Clinic in Jacksonville, she really cares about people and boy is she extremely knowledgeable , this was mug opinion though, I do see a local Dr in Brevard County who Is really good also, but if I ever feel like like I need another opinion she will work with my local Oncologist on her opinion of treatments she thinks might help , when Covid hit I did a few zoom calls after my first in person appointment with her at the Mayo Clinic in Jacksonville, good luck hope this helps !

kduck profile image
kduck in reply to Djd60

Thanks

I agree three years WOW! When I was diagnosed I was literally close to the end. Get a second opinion if your not satisfied or don’t have the support from your Dr. Do your research. Do what you can to be there for your children. People have had Mets for more than 10 years. I didn’t know that was possible. Believe me I know how hard it is but the mind is a powerful thing. It’s human nature that we feel lost with no hope in sight but God is in control he decides our last day so stay positive love on your children as long as possible don’t waste that time with no hope because each day is a blessing.

This group is awesome and I’ve only been on here for a couple weeks. A lot of support here even if we don’t have answers sharing our stories may help you with questions to ask your Dr.

Stay strong

Be blessed

USIrishcolleen profile image
USIrishcolleen

kduck,

I read your post last night, and felt so much anguish for you. If I had kids, I would be the same way. I am a co-conservator for my 22 yr old mentally handicapped niece, and I feel the same way about her. I just pray that I stay NED, even though I do not really know that I am NED. Scan in Aug., six months after my radiation.

Thinking of you kduck! Here if you need an ear!

Colleen

RLN-overcomer profile image
RLN-overcomer

Sister/warrior I hope/pray you will get the right treatment, and Dr's that will keep you here many, many more years with your loved ones. Think about getting a second opinion, or looking for another Dr/Oncologist. You need to be confident in he Dr. that is suppose to be caring for you. 🙏🙏🙏

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