I was just wondering about diffrents treatements I've read about here.
I'm puzzled.
I was diagnosed de novo in May 2020 with extensive bone mets. I was put on Ibrance and Anastrozole, was NED in January 2021 and had primary breast tumor removed in March 2021.
In May 2022, slight uptake in two existing tumors. Onc says we stay on the same treatment and see in september 2022.
In September, still more or less the same slight uptake. Onc says stable, we stay on same treatment.
If on next pet uptake (SUVmax) increases, then radiotherapy on the tumors, but stay on same treatment.
I'm puzzled because this doesn't seem to be the way most of you are treated.
Thanks for your comments
Lovexxx
Lucie
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Lulu4545
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seems a reasonable course as the therapy is mostly holding and your onc is trying to get the most out of it before moving on. Your cancer isn’t wildly not working and getting radiation might be key to years of benefit. Seems all very reasonable but I haven’t managed to get radiation ever before. But might soon for my bulgy lymph node. They have kept it in place as the “ canary in a cold mine” to be able to touch and feel how each treatment is working since all my other bits are in bones and very stable now.
Hi There, I agree with you! It so puzzling! I know everyone is different but for a treatment that suppously is quite standard (at least for the first few lines of treatment) it makes me anxious to see that onc use different next steps. First, thank you to everyone that openly share details of their treatments, I have started writing down treatment options people mention on their posts so when my next progression arrives, I can ask questions. Also, I go to my regular onc and also to a university onc twice a year just so when my next progression comes, she/he can give me a second opinion on the latest and greatest combo. Actually, the onc at Stanford Univeristy said when you get your next progression, call me before you start your next line of treatment, so we can check what else if out there. Not sure, this posts help, but PLEASE advocate for yourself. Cheers, WF (Winter Flowers)
I agree with your onc. Why start another med when the one you are taking is working for the most part. Just my opinion. Good that you get a second opinion.
My oncologist says it's all a matter of doing enough but not too much. Toxicity is a big deal--I'm feeling the effects right now of unexpected high blood pressure (more typically occurs after one year on Bevacizumab) after one treatment. Actually, they didn't measure blood pressure after the first, but before the second it was higher than it's ever been in my life, and normally I'm a 118/74 type of gal. Now it's occasionally 150/103, but comes down with two little white pills--but not to my normal. All very wierd. Stable for four+ years on Ibrance and Faslodex (Letrozol did nothing for me) and now wierd on Capacetabine and Bevacizumab. The former gives me gas and occasionally diarrhea or nausea, but not too bad. I have to say, though--felt much better on the Ibrance and Faslodex combo.
How about your markers? Do they use them as well as a complementary tool to follow the performance of your meds? Uptake on PET-Scans may differ from your previous one due to different reasons. At the end of the day scans are just an instant photograph and not a video movie...so unless there are significant variations from one to another accompanied by new clinical symptons and blood test results, it is better not to think about it too much as it is energy consuming and will prevent you to use it to enjoy your day to day routine, which is very important as well for the management of your disease. Try to stay focus and do not anticipate too much...most treatments will stop working eventually but in many cases is probable is a question of years, not months, nevertheless it is mandatory a frequent check. All the best, and have a lovely weekend!
ask your oncologist and the radiation oncologist why they are redommending radiation therapy. When l had it l was told in no uncertain ter s that the treatment was to treat the horrible pain l was having that it had no cancer kiliing or stopping effect. Also ask about side effects. Get a second opinion , do research if you have doubts.
In reply to LUlu and NPmary - two things I would like to share. First of all, again thanks to all that are here sharing our stories. We really need each other. Ok, ER/Pr + Her2-. Dx in 2016 had lump removed and many nodes under left arm, sentinel and aux, took out 13 and 4 were positive. IIIstage did the chemo and 17 days straight of rads to left breast. Then on anastrozle. That med lasted about 2 years. 2019 mets, vertebras, hips, sternum, clavicle, etc., no organs. Took Ibrance 125 with fasoldex for about 14 months only. In 2020 my T10, I think was causing a lot of pain and my onc had me do radiation. IF IHAD KNOWN IT WAS ONLY FOR PAIN AND NOT KILLING THE CANCER, I never would have done it. 2021 the mets came back again and one in the same place T10. Plus, in May of this year scans showed RT-pulmonary fibrosis and bronciatis (sp). I do not have the coughing bronchitis, it is just something in my bronchi and I asked my doc what the RT meant and he said from the radio therapy years prior, as it stated tangible to left breast. I will never do rads again. 2ND thing - Now, I have been on Capacetabine for 6 cycles and my tumor markers have gone up from 70 to 250. Had ct and bone scan on the 16th and 23rd and both report state stable, showing the difference from June's scans and current, side by side. No progression, but the damn C is still on my vertebras and hips-I can feel the pain. I really thought that it had spread even more because of the pain and the week of of cap is when feel it worse. When I take cap, I do not have the extreme pain. So, now what? See doc tomorrow on the 3rd of Oct. We will see the tumor markers and take it from there. I, personally would like to see lower tm's and stay on cap, just like everyone here trying to get as much time out of the meds before changing. Acutally I should have 2 more cycles to go, but some women have been on cap for a long time. Sorry for the long post, but I wanted to share the 2 issues. Stay strong and blessings to all.
You want as much mileage as possible from each line of treatment. My onc is treating me the same way. As I understand the SUV can be somewhat open to interpretation depending on who is reading it. Mine tends to go up and down.
Yes it has. I have a lesion on my hip that increased and because of the location and risk for fracture I had one dose if radiation to zap it into submission. This was a precaution as I have no pain. The others' SUV go up and down. I am still on the 1st line of treatment. My entirely unscientific observation of comments on this board is that some onc are quick to change treatment if there is any change at all and others are more patient and watch things. My preference is to squeeze every ounce of use out of each treatment before making a change. It appears that each subsequent treatment is useful for a shorter amount of time. You have to make the decisions that make you comfortable and I hope your onc respects that.
I’m on the same treatment. But you’re lucky to have had surgery to remove. They say I can’t have surgery but don’t give up hope. I have cancer in my lymph nodes and it’s gone and and my tumer in my breast has shrunk. The met on my T12 I had radiation and that’s gone. I just now am suffering with Uti now going on 13 days. They can’t figure out what is wrong. The drugs also gave me severe osteoporosis so we just can’t win. I was so positive at the start of this journey but I’m loosing faith. This is my 6th uti this year. Best to you!!
Dont lose faith! Reading about your uti’s, I felt compelled to say, ive had the utis, but think ive learned why and how to keep them at bay. I take Verzenio (which keeps my neutrophils low, often neutropenic) which makes me more open to infections (eg, utis) and Femara (letrozole), which lowers the estrogen significantly. When i started getting utis (ouch 😣), I drew the lines about my condition and began probiotics orally and prebiotics vaginally (only takes once a week for the vaginal one, but everyones different). Also, during a flare up, i do unsweetened cranberry juice and oregano oil (fights infections). Im no doctor, so ask yours about these supplements, but i have found you have to do your own research if you want to benefit from supplements. Also check for interactions when combining any supplements with your prescriptions. Focus on your blessings. Everything always works out.
I had several months of utis in my second year of ibrance and letrozole. I was prescribed various non hormonal vaginal lubricants to keep that area healthy and the oncologist recommended cranberry juice. I found a pure and unsweetened one called Biona, which I dilute and take daily. Plus I take a small amount of kefir and probiotic tablets. I have had no further issues. X
I have to agree with all that you have stated. If you can get the cranberry concentrate that helps to using 15ml and mixing it with a bit of filtered water. Over the last 6 years, I have never taken pain pills because they can damage your liver and kidneys. I too use esssential oils like frankincense -boswellia serrata, specifically and mix with olive oil and and peppermint oil and literally dab on my spots on my back and rub in my hands and then rub over my illac crests, side of hips, lumbar and siactica. The peppermint rally helps with inflammation. I also take tintures of 2000mgs of CBD oil 3x day and I do pretty good. Hope this info helps anyone looking for pain relief w/o taking pharma pain drugs. In addition, I also take quercetine as it lowers the estrogen and bromeline which helps the lungs.
I had lots of UTI's also--nothign that gave a positive culture result--just irritation shown by bacteria found in urine. My oncologist prescribed 0.01% estradiol vaginal cream. Studies show that at first a little estradiol crosses to the body but after the tissues build up no more crosses. It has worked wonders. The vaginal epidermal lining (and others in the body) become very thin and allow bacteria, etc. to get into the urethra. Ask about it--or search for studies to show your onc. Best to you!
I take Over the counter Azo for bladder symptoms . It helps a lot as all the anti estrogen meds we take are very drying especially to the bladder and vagina. I do get my urine checked if I have burning on urunation.
I am experiencing the same thing--small amount of activity in one rib--but it remains the same. We are just watching it--and I am not on any treatment currently. The SUV max is a very unreliable number--if you do a search you will find it sometimes varies by 25%. My onc says we will only call it "progression" if we see an increase in size or more tumors--not an increase in SUV max. I also had two spots light up in a vertebrae--and on the next PET no sign of them. Not even mentioned. All tests cannot be repeated 100%--allowances are needed for reproducibility. Best to you!
Hi Lucie--I was on treatment for 3 years--anastrozole, fulvestrant, then letrozole. Ibrance off and on with these. They made me so ill--memory loss, fatigue, extreme brain fog--I felt like a dementia patient since all I could do was sit around. I went off letro and Ibrance as an experiment--and my head totally cleared. I could not go back on. I only had 1.6 cm tumor in breast which was removed by lumpectomy. No other tumors ever in body. At de novo dx I had one brain tumor--also 1.5 cm. I found a new onc who said there are studies of older women (I was 75) getting progressively worse cognitive problems--so she said let's stay off treatment. After about 1 year PET showed spot in rib and vertebrae. Five months later rib is stable and vert spot gone--so we are waiting another 6 months to see. (Brain tumor was removed via craniotomy and then follow-up SRS.) I am "oligo" so slightly different case! Let me know when you have read this and I will delete it--since the confidentiality on this site is questionable! Best to you! Kay
Bone mets change pretty slowly, so it sounds like a good plan. Don't be in a rush to change treatments- you may end up with side effects you dont want.
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