Heavy news today

[SoulJourney]

Hi Everyone,

I am feeling really bummed tonight…over the past 5 months I was on Enhertu, I qualified because of the destiny trials.

Long story short it was a disaster, not only did I have infection after infection but I ended up with extensive uptake in bone Mets and spread to my liver again (originally had liver Mets but they healed with treatment).

I was supposed to have surgery to fuse a fractured and compressed C5. Today I was told after X-rays, scans and MRI that surgery is a bad idea. There isn’t enough bone to mount to. I have tumours on C2,3,5,6,T1 and I have compression fractures at C4(where they were thinking about surgery) but also C7 and T2.

That where the imaging stops. We don’t know what is happening in the rest of my spine.

I have bloodwork on Monday and we talk about treatment options on Tuesday.

In the meantime I am also getting fitted for a soft collar to wear alternatively to the full collar.

Without the neck surgery they can’t do a liver surgery. And one last kick in the gut my treatment options are becoming limited.

For the first to years I lived preparing for death but I have spent the last 8 living as full as I can. I have been really blessed, my boys grew up and graduated, one is married and another is getting married in June.

I just have too many goals left to not search out more options! It is hard as I am going into my 10th line and oncologist is not ready for early stage trials.

Has anyone done extensive hormone therapy, chemo and then back to hormone or CDK inhibitors?

Thanks for any input. Knowledge is power!

Tammie

[Pachira]

hi Tammie. I doubt I’m very helpful but currently I’m on Verzenio and Fulvestrant and it’s worked well for me this past year. Co-incidentally I had a discussion with my oncologist about my potential next line. He was very excited about enherthu bu I had a second opinion a year ago and it was she who put me on Verzenio and Faslodex. She had also told me my next line s/b Piqray. I wasn’t terribly excited about enherthu and said I’d stick with Piqray when I ultimately had progression. I have read that you can circle back to a CDK after a break. Possibly a change like Verzenio might be worth a shot. I too am at high fracture risk with a deformity in the base of my spine and a couple of compression fractures. I told myself that as I ate toast and sardines for lunch. Sorry about your bones and liver Hopefully someone else will be more helpful hugs Chris xx

[Hopeful4Cure]

I feel for you Soul Journey. That is a lot to take in. There is another person on this site and I forgot her name, but she had cement in her spine to help with fractures. I was on enhertu which is ideal for her2positive, I am low and going through a test to confirm, but it did not work for me. All I can suggest is getting a 2nd opinion with options, the best for you and your situation and remember - where there is a will, there is a way. Blessings

[Merma]

I am so sorry to hear of your news and suffering. Sending healing thoughts.

There was a post about stopping a cdk 4/6, going on something else and then restarting the cdk 4/6 inhibitor. This is what I found.

dana-farber.org/newsroom/ne...

Also, I have been reading about the ctnnb1 mutations as a new target. They are using ttk inhibitors. Don’t know if that’s one of your mutations.

Best wishes.

[13plus in reply to Merma]

That's very interesting about the potential for CDK 4/6 resistance reversal! Though 2019 almost sounds a little dated to me now in the world of breast cancer treatment discoveries. I wonder if any more research has been done on this yet? Thanks for sharing

[Merma in reply to 13plus]

That was the one I had in my files. I do need to follow up on that research. If I find any, I’ll post.

[KimberlyB40]

Hi! My prayers go out to you! Where are you from? I know Healthcare options are different if you are out of the states but I would ask about a ctdna blood test by signatera. It sounds like more of a genetic profile but it's not at all and the results to that may show what treatment route might be better than others. I've spent the last year on calls w so many companies trying to get more info because I found it in a clinical trial study but I have a rep on speed dial and they are helping me add this to my monitoring.

[TammyCross]

There is someone else on the board, not currently active, who had much damage to her spine but found a surgeon at Mass General who was willing to take on the project of fusing pretty much her whole spine. Pretty drastic, but there may be a more adventurous surgeon willing to help with that part. -- If that is the key to getting the liver surgery. There is a long recovery, though, and that may make it too far down the road to help with the liver.

You are the second person to post today who had progression on Enhertu. Hmm. Anecdotal, though.

[Discocat]

Hi Tammie

Sorry for your situation.

Is it possible to get a specialist 2nd opinion? May be there's another way to approach the spine surgery?

I have heard of people returning to CDK 4/6 inhibitors after a break....

When I had issues with my first treatment not working out (Kisqali)...I asked my oncologist what the protocol is...and she said that we'd try another CDK 4/6 (ibrance)...then if that didn't work she'd try another type of approach but she specifically also mentioned that we could come back and retry the CDK4/6 treatments later again.

In my case the ibrance is still effective so I can't report anything about the alternatives she mentioned.

Sending you warm wishes and positive energy.

Zoe

xx

[Totheriver]

So sorry to hear what you are going through. Hope and pray that they find ways to help you. 💕This journey is a struggle. I am just dealing wit progression too.

[PJBinMI]

I hope you can put worry aside and enjoy the weekend! Easier said than done..... I'm a long timer with MBC (diagnosed on 3/1/2004 , bone mets only.) It sounds as though you have been on the cancer journey for quite a few years, too, and that alone is promising! I've been on Letrozole, Fulvestrant, Exemestane, Xeloda, and now had 3 infusions of Taxol. I also had Ibrance briefly in 2016, but it did seemingly permanent damage to my right lung. Last year, lab work showed the cancer was no longer E+, but now is triple negative. I've had "extensive" bone mets since the beginning, in spine, hip, rib, and left shoulder blade. I had to stop Xgeva around 2 years ago as I developed ONJ (osteonecrosis of the jaw.) It was found early and brought under control by an oral surgeon. It's stayed controlled and I feel lucky about that. Early on I had back surgery with spinal fusion in the lumbar area. Had a second back surgery a few years later. Mets stayed bone only for a long time. (My memory isn't good! Evaluation showed it to be age related.) First otherr places: in tissue blockage of left ureter, and on surface of right front cerebellum. Treated with surgery (ureter) and stereo-tactic rads. Since then, cancer cells in my abdomen caused an intestinal blockage 16 months ago. Part of my small intestine plus valve from my stomach removed, and my digestion, both in and out, has been problematic ever since. But I'm still here enjoying family, friends, pets, views of nature .... and feeling pretty good considering the state of the world today! May your onc have ideas for your treatment that will put your mind as ease and put those cancer cells to the death they deserve! Keep us posted!

[Saltandlight]

Hi Tammie-I just lifted you up in prayer as you have a lot to process for sure. I don’t have any treatment advice and I’m going to pray you can locate a surgeon that can possibly do this for you. You keep focused on your goals and I’m adding you to my prayer chain. Please keep us posted on what you find out next week. Know you are loved!

[Healthplus1]

I know how you feel, in many ways; wanting to know next steps, living my best life now; but the journey is long and arduous. My cancer is in the spine as well. I have been on Orserdu for 4 months, 5th line of treatmenr and tumor marker numbers keep going up. My next PET/CT is next week. For the past 30 days I have been mixing drugs capcitabine with the oserdu. (this is NOT doctor approved so I do NOT recommend) I do this to taget both PIC3 and ERS1 mutations. I have read that the Elevate Trials are combining CDK4 inhibitors with Elacestrant (orserdu). Ill know after my blood work if it helped or not.

[Dragonfly2]

dear SoulJourney…you do have a heavy load and have been experiencing many Disappointments with your meds, your question about a return to CDK4…fours years ago I had gone for a second opinion from Dr. Mary Chsmberlain at the Dartmouth Hitchcock medical center in Hanover NH. She agreed that there was anecdotal support regarding CDK4 inhibitors becoming effective again after a break. No one really knows how long the break needs to be…or for how long the CDK4 will be reactivated. If you truly want to go down this road, have that conversation with your ONC , of course. I hope you get some ladies who can give you the answers you seek. Prayers for your recovery and the opportunity to enjoy the experiences you look forward to. 🙏🙏🙏❤️‍🩹

[13plus]

Dear Tammie, I'm just here for moral support. You've certainly been hit with a lot of negative news from your medical team, and that can be so much to process emotionally. We're here for you! You don't mention where you're currrently being treated but I think I would seek out both a place that has a top expert oncological spinal surgeon, for a second opinion about that. And a second opinion for your treatment options. Perhaps a return to a CDK 4/6 is a viable option to try. Wishing you all the very best through this challenging time. Sending you light and love!

[hurricaneheather]

i do not have the experience regarding the inquiry. i hope you continue living 'as full as you can.' may you live with ease while making choices about all that has been presented to you.

[Mardy72]

I was 66 when I was diagnosed with MBC. I had a compression fracture to T7 which is in-between my shoulder blades. The neurologist said to quit work and not do anything, that i could be paralyzed from the waist down in any minute. 2 weeks later I had a 5 hr surgery. A cage replaced T7 and I have rods and screws from T9 to T5. I have 12 screws. I live in Arkansas. I had it done at UMAS in Little Rock.

[SoulJourney in reply to Mardy72]

HI All and thank you everyone for sharing and your support. 10 years ago they did do surgery and replaced my T12 and fused it to other vertebrae. This time around there just isn't enough healthy bone however someone wrote about a whole spine fusion. Depending on what is going on in the rest of my spine things could change.

In the meantime I have had a week to sit with this and I am hopeful for whatever chemo options they can give me. If there is something to create regression of disease my body may be able to lay down bone and there would be something to stick to in the future. I just have to play it safe in the meantime.

I have been at this for for 8 years longer than anyone expected. I have often said I am living on God time. No of us knows for sure when and i still really don't know. So my life has been in my oncologist's hands till now and she has out done herself, no reason to stop believing yet.

It is looking like I could truly use a miracle and Tuesday will be a big day! Will keep you all posted!

Thank you so much for the support because you all understand and I needed to hear that!

Hugs Tammie

[TammyCross]

What happened, Tammie? How are you and what are you doing?