"Your cancer may be changing course."

[Dianne417]

Has anyone ever heard these words? What do they mean? For the first time since I was diagnosed w/MBC 3 1/2 years ago, I have had recent progression to the ribs that has caused me to have pain and mobility issues. Both my NP and a clinical social worker, with whom I spoke in the last couple of weeks, have both made this statement. I'm guessing that it's lingo for "Things may be taking a turn for the worse," but I'm not sure. Any light you could shed on this for me would be greatly appreciated.

[Hidden]

Hi Dianne417 -

I recently heard similar as my tumor markers were rising dramatically just before a scan that showed some progression... "It looks like you're turning a corner...". I took it the same way you did, i.e. progression, likely change in treatment.

It sounds like you've gotten confirmation on the progression and so are they talking about a change in treatment, or have you already done that?

But, by being phrased that way, it sounds like it's not conclusive...? Or that maybe you can delay a change for a while to see what happens?

Maybe you want to phone them to get clarification? Seems like a reasonable question...

Best of luck with it...

Lynn

[Dianne417 in reply to Hidden]

Thank you so much for responding, Lynn! I'm sorry to hear that you are in a similar situation. I hope that things will improve.

I was taken off my last drug (GDC-9545) at the end of May and started on Faslodex in mid-June, but it doesn't seem to be doing much yet, given my continually rising CA 15-3 tumor marker numbers (now at 420) and periodic fresh bursts of pain, most likely from the tumors in my ribs expanding.

I will have new scans and another tumor marker drawn in the first week of August, and we'll see what happens then. If my scans show continued progression, my medical team may decide to change my drug at that point.

Thank you again for your feedback and for sharing your experience with me!

[Hidden in reply to Dianne417]

Hi Dianne -

This might be a "stretch", but based on my limited knowledge/experience your markers and even pain might not be a bad sign?

From what I understand, the tumors can hurt when they're growing and then again when they're healing. I had some not-quite discomfort, more like sensations from my tumors early on and my doc told me that (and she was right). Also, tumor markers can spike early into a new treatment as the dead cancer cells are "shedding", which apparently has that effect (increasing the markers).

So I wouldn't necessarily assume that these are bad signs...

Take care,

Lynn

[Dianne417 in reply to Hidden]

Hi, Lynn! Thank you for taking the time to write again to share this information. I'll certainly know more when I have my scans next month. Whereas I think some of what I've been feeling is an artifact of the drug doing its work, I suspect that the often severe pain I've had in a couple of locations on my ribs may be due to the cancer actually progressing in those spots, although the vertebra in my lower back that was giving me the most trouble initially is actually doing much better.

Thank you for reminding me that tumor markers can spike early in a new treatment due to dead cancer cells being shed. This may or may not be happening. Like you, I had the experience of my tumor marker numbers beginning to increase astronomically in April and it doesn't look as though they have slowed down any. Right now, I'm in a wait-and-see mode. I'll let you know what I find out next month. Thanks!

[Red71]

I think I am also in the same place your are Dianne. My tumor markers have been slowly going up since I started on Faslodex last January. My scan 2 months ago was about the same or slightly improved but since my markers have not gone up like this since my diagnosis a little over two years ago, we are hoping that it isn’t a sign of something changing. Like Lynn says it could be getting better and a sign of healing but somehow my brain isn’t accepting that. I’m sure my next scans will tell us something. I’ve had a little more pain in my rib lesions but I also helped my husband carry a heavy sack of fertilizer which I should NOT have done! 🤦‍♀️

I’ll hold my breath, cross my fingers, and say a prayer for you! After all the drama and boredom of the Covid crisis, we deserve a break and good news.

My husband and I took our iPads and sat outside at our local coffee shop and had ice tea and muffins and watched people. It was so good to be outdoors and around people even if I wasn’t interacting with them and was over 6 feet away that I told him that I could have sat there all afternoon. It really elevated my mood!

Elaine

[Beryl71 in reply to Red71]

That sounds like a lovely outing. I had a walk with my sister and brother in law who are my bubble, we sat in a church yard and ate ice cream. I was so happy to have company and fun. This disease and the lockdown have taught me to appreciate the simple things in life.

[mariootsi in reply to Red71]

Sounds wonderful!

[Dianne417 in reply to Red71]

I'm so glad to hear that you got out, Elaine! It definitely makes a difference -- sunshine, fresh air, tea amd muffins, with a steady stream of people watching to keep you entertained! Good for you!

I wish you the best of luck with your next scans and thank you for taking the time to write.

Dianne

[Julie2233]

I heard similar statement from my oncologist a few weeks ago. The nature of breast cancer can change. Mine was initially hormone positive and her2 negative but over time it can become hormone negative or her2 positive. I’ve now had 3 treatments that haven’t worked so am waiting the result of a liver biopsy to see if it has changed. You can also have different types active in your body at the same time.

So I wouldn’t assume that the statement means things are taking a turn for the worse it might just mean that the nature of the cancer has changed.

[Dianne417 in reply to Julie2233]

Thank you, Julie! This is very helpful. I was supposed to have a bone biopsy when I completed my last trial, and another one done at the same time before I began my current trial, but both were scrapped because of Covid-19. DF, like all hospitals and care facilities in the Boston area, was trying to keep as many people outside its doors as possible, which meant dispensing with procedures that are not wholly necessary. So right now I have no idea what is happening with my cancer, but I greatly appreciate the point you raise. I will have scans again at the beginning of August and will see if my new drug (Faslodex) is doing any good.

I am so sorry that you have had three treatments that haven't worked. That must be so discouraging. I hope your doctor will find something that works for you soon.

Thank you for taking the time to write and share your experience with me!

Dianne

[Julie2233 in reply to Dianne417]

I was on faslodex and ibrance for 18 cycles and it really suited me. It stopped working last summer with spread to my liver. At the time the oncologist mentioned that sometimes when breast cancer moves location it’s nature can change, I asked for a biopsy then but he wouldn’t give me one. He also said that it can change nature at any time and often does after a few years.

Hope you do well on faslodex 😊

[Red71 in reply to Julie2233]

What have they changed you to, and is it working? If it’s not working, then I think a new biopsy would be in order to see if you need to change to a drug that is more appropriate for the type of cancer you are dealing with. It seems only logical to me, but sometimes these things don’t seem to be be decided by logic!

Elaine

[Julie2233 in reply to Red71]

Yes I’m a big cross as it’s taken 9 months of ineffective treatment for him to agree to a biopsy. But as you say our oncologists don’t always seem to follow logic 😊

[Dianne417 in reply to Julie2233]

That's so interesting! Thank you for taking the time to share that.

I'm glad that the Faslodex and Ibrance lasted a good while for you, but am sorry that your cancer has spread to your liver. What are you taking for it now?

Dianne

[Julie2233 in reply to Dianne417]

I’m off treatment at the moment while we wait for the biopsy results. Hopefully they will come through in the next couple of weeks and I can be started on an appropriate treatment 😊 I really don’t like being off treatment.

[Dianne417 in reply to Julie2233]

I don't blame you, but it sounds like it is worth this pause to find a treatment that will work. Fingers crossed!

[Dianne417]

Hi, Elaine! They changed me to Faslodex, which was the drug randomly chosen for me by the trial I just enrolled in. I don't know if it's working or not. My medical oncologist said that it is the drug she would have chosen for me next, even if it had not been selected for me by the trial. I will have scans again on August 6 and we'll see what they say then.

Thank you for taking the time to write!

Dianne

[Hidden]

Hi, when I was first diagnosed I was told that Cancer is clever and gets used to the drugs we take and eventually mutates to a different form. Not sure if your explanation means the same. On the bright side I was also told there is so many other treatments that can be taken if this happens. I hope this helps.

I was diagnosed with bone and lung mets Stage 4. This was 16 months ago. I’m on Ibrance, Letrozole and Denosumab injections.

Best wishes

[Dianne417 in reply to Hidden]

Thank you Flowerfairies2 for getting back to me! Yes, cancer is very smart. I don't know if mine has changed or not, but I will inquire at my next appointment whether they have done any genetic testing of my primary tumor. Unfortunately, bone biopsies I had been scheduled for were canceled due to Covid.

I appreciate you taking the time to write!

Dianne

[Hidden in reply to Dianne417]

Keep in touch Dianne.

Best wishes

Cheryl

[Dianne417]

Thank you, Cheryl! I'll let you know what my scans say next month.

Dianne