De Novo Stage IV
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Denny, thanks for the information, I hope you get your vaccine soon.
Hello ladies, I hope everyone is doing well and stay safe. I had a quite week.. a sudden and severe pain started in my lower back last week, pain was so bad, I rest- couldn’t do anything else- with a lot of pain and tears I managed take my scheduled cat scan, was hoping it would show if something happened, like fracture again? I hope not... Reports back, nothing new but confusing it saying Punctate sclerotic foci, multiple “small bone islands” in femoral shaft and iliac bone. Please help me understand those terms I don’t know any of them, tried looking up not much getting thou, do you think those things “islands” or sclerosis cause the pain? Thanks 🙏
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I had bone islands noted in my report years ago, they are not cancer and haven’t caused me any pain. Sorry, I wish I had more to offer on the subject.
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Denny - thanks for the heads up. Lymphedema on one side, nodes removed on the other. Hopefully they will let it be in thigh. Probably cannot get vaccine until May. If they do not have screen, I guess everyone will be treated to a view of my glorious butt.
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Just for information purposes.
Significance of the Genomic Landscape of a De Novo Endocrine-Resistant Metastatic Hormone Receptor–Positive Breast Cancer
Show all authorsMaithreyi Sarma
, Yara Abdou, Ajay Dhakal, ...First Published December 16, 2020 Case Report 
https://doi.org/10.1177/11782234209763870 -
Very interesting, Tinkerbell. Thank you for sharing. I’m very thankful that Ibrance and Letrozole have held back progression for me, although I still have a high tumor burden.
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Mae, thanks that is great to know these islands are not cancer, such a relief. You said you had them years ago, did they disappear in your recent scans?
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Snowdrop, it was mentioned initially and noted as odd but is only mentioned on occasion over the years, not because they’re not there but I presume it’s just the difference in radiologists reports. Some note everything and some are only looking for cancer and changes. I brought this up to a trial doc who radiated by bone met and he just said yeah, some people have them and it not a concern, just a kind of random thing. I left it at that because in my experience, if those looking for cancer are not worried, then I get it out of my head and move on.
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re: Calcium Supplements.
I’m not sure how many folks struggle with constipation. I got exhausted swigging on MOM every week. Approximately 2 weeks ago I made a change from calcium carbonate to calcium citrate. Grant it, It’s only 2 weeks but it did make a difference surprisingly with constipation. FWIW when your bottle is empty making a change may help if constipation is an issue. For awhile I decided not to take a calcium supplement but my numbers were on the low normal side. Unfortunately I was unable to obtain enough calcium in food.
Any success stories with changing products for constipation? I tried to add fiber 2 but it wasn’t helping that much.
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Tinkerbell, I take a generic form of Miralax every day or every other day. It really does the trick for me.
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thanks KBL. When I first started treatment I purchased Miralax and Mag Citrate. If the calcium citrate fails I most likely will start the Miralax. Do you take a calcium supplement
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Mae, I am glad you had a chance to discuss this with your trial doctor. It is a peace of mind for us knowing that something is not a concern.
Tinkerbell, very interesting to know, I did not know about citrate vs carbonate, just checked my calcium! Will try citrate next. I also learned to take daily calcium and vitamin D from ladies. Constipation, as far as I was told, related to low blood counts. I use lax when it is necessary, and eat dried prunes late evening. Despite I feel pretty much better with prunes, recent scans with 5 hours fasting was different from my expectation!
A question for all, what pain medications you use?
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Snowdrop, I only had tramadol for a couple days after surgery but nothing else. I’ve been super lucky to have no general or frequent pain.
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Tinkerbell, yes, I take a calcium/vitamin D combo.
Snow-drop, I take a naproxen but very sporadically. I don’t need it every day, maybe once a week or even once every two weeks. I always have pain, but I have a high tolerance and just keep moving.
I’ve always had a constipation issue, but I’m more inclined to think it’s because of my thyroid issues I’ve had for too many years to count.
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Snowdrop and KBL: Thanks for your input. It seems when you start adjusting with one side effect, something else comes along. I've been fortunate managing pain (knock on wood). When first discovered w/ bone met, pain began escalating beyond a NSAID. Until I was scheduled for SBRT, I did benefit from a Lidocaine patch (mainly helped me to sleep), pain was worse lying down. So if you haven't tried lidocaine (creme or patch) maybe it could help you w/ pain symptoms.
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Tinkerbell, I will keep lidocaine on my mind and try it if pain becomes unbearable. Thank you for the suggestion.
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When I was on Letrozole, I found the lidocaine patches to be very helpful for my joint pain. Now I'm on Faslodex and don't have that joint pain just the usual arthritic kind, but Tylenol works on it for me.
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Tinkerbell. I take a dose of Miralax every evening and from 1-3 stool softeners. I never saw a difference with the Calcium supplements.
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Denny123: Thanks for your response. Glad to hear Miralax works for you. I have a feeling Miralax will be in my not to distant future.
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Tinkerbell...it and the stool softeners are safe. My constipation started over 7 years ago when I started on Kadcyla. So that is what I have had to do ever since.
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thanks ladies for your inputs and support 🙏🙏🙏
I had a zoom meeting with my MO, she suspected a possible uptake in the area of pain, as I had similar experience before when a sudden and severe pain started in my lower back ended up vertebrae fractured. The radiologist also said there might be something that scans not able to show. MO recommended a bone scan, I convinced her for MRI instead. I continue taking easy for another couple weeks. Optimistically I really hope it is not C or serious.
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Snowdrop: Hope you have your MRI soon. I never had a bone scan but from reading on these threads nothing has swayed me to consider the same.
I received my FDG Pet CT Scan report. MO is out of the office for 2 weeks, fell on the ice, we had over 30+ inches of snow in PA. In any rate, a new finding on my scan, I swear the RO descriptions are so mind boggling. Every 4 months I have a different RO reading it but this is new on Findings: mediastinal blood pool suv 2.4, Liver suv 3.5. Overall impression: No avid FDG malignancy.
Since the MO fell on the ice, I wont receive an interpretation unless I make an appt with her PA-C. The good news is no malignancy but is my liver inflamed, or pre cancerous. Should I go on supplements to reduce liver inflammation, then again who knows if it is inflamed? Perhaps when I go for my lab work, the liver function test may add some data. Anybody else have a similiar finding?
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Tinkerbell, my understanding is any uptake between these 2 numbers mean stable/ normal. These are 2 baselines, blood pool and liver function. I have limited knowledge about pet , I might be wrong. when my reports were ready I was in transferring to new MO so I never got a chance to discuss it with anyone!
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Snowdrop: Thanks for your interpretation. This is my 4th FDG pet ct scan since diagnosis. Never seen SUV data, with my bone met the term was " extensive Osseous metastatic disease in L2".
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I think if the uptake is higher than those baselines, it should be on the report, for example my axillary lymph node has uptake x (forgot the number) times higher than the baseline while primary tumor in my breast few times higher. Those tumors/ Mets that respond well to treatments (got radiated for example) are not showing active in pet examinations, so some radiologists don’t bother to report them.
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Hello all!
It has been a long time since I have posted on this community board. I took a break for a while because I have been doing advocacy work with Living Beyond Breast Cancer and it has taken up a lot of my "cancer" energy. I hope to be able to take a moment and catch up a bit and see how everyone has been doing. I really miss having check in's with you all.
I am back again because I have been dealing with some changes to my MBC situation. The biggest concern I am having right now is that the cancer in my right breast, where the primary tumor has been and then completely shrunk on Ibrance/Letrozole, has now come back with a vengeance and is very high grade with a Ki67 of 75% (which my new MO told me is incredibly high especially for ER/PR+ breast cancers). I am meeting with the oncoplastic surgeon on Tuesday next week and getting shuttled into surgery ASAP.
I am wondering if anyone else has dealt with this and what are your thoughts and experiences?
My MO is taking the stance that he believes the cancer in the breast tumor is quite possibly different from the cancer in my bones (and maybe in my liver which is a mystery at this point because a CT scan and liver MRI showed multiple liver lesions and then the Petscan showed no metabolic activity. So either there are lesions there and they are "senescent" aka sleeping or somehow the first two scans were just wrong?
Looking for guidance from others.
Much love and hugs,
Philly
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Welcome back philly!
I had a high ki67 too, 80 or 90%, I think. In my case HER2 was likely driving it. Are you still HER2 negative or could that have changed?
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Philly I had a somewhat similar situation. After being stable for over 5 years I developed a new breast tumor. It was decided just to watch and see because it would be unusual for my cancer to suddenly turn aggressive. When it doubled in size in 2 mos then a biopsy was done. The new tumor had different receptors so it was decided it was a new cancer. So had a mastectomy. Continuing treatment is based on the old metastatc cancer because it is what risks my life according to tumor board. (I dr. at large U hospital)When I have new sites of mets I dont know how they will determine what treatment will be. At this point due to my long survival there arent a lot of answers! I wish you a treatment decision soon that is successful with gentle side effects.
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Philly, good to hear from you! Welcome back.
Sorry you're getting mixed messages with scans. If I remember right, you had mixed scans with your liver dx like me 18 mos. or so ago. For me, the PET ended up being the definitive answer. I feel like the CTs may very well be showing sleeping mets if a PET shows no activity; IMHO. I'm really sorry the BC has returned to your breast. I agree with Mae that perhaps you're now Her2+ since it's aggressive? I was Her2+ since dx and for 4.5 yrs, but now they've determined I'm not anymore. Hugs and best wishes as you go through surgery.
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Hi, lovefromphilly, sorry to hear you are going through this right now.
I also had a Ki67 in the 70% range at diagnosis and the tumor was also HER2+
Could it be that you are HER2 low, which might open up future treatment possibilities if needed in the future?
Wish you the best of luck with your surgery
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Hi, Philly. I don’t have anything to add, as I have not been in your position, other than I’m filled with mets to every part of my spine and stomach and they never have shown on a PET scan. I have ILC, though. I just wanted to say welcome back, and I hope you get the answer quickly.
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