De Novo Stage IV
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Thanks, illimae. Congratulations on being stable. Long may it continue!
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Hey NineTwelve, I think you mentioned before about the nipple retracting further as the tumor was shrinking. Can I ask, did you also notice that the tumor was no longer "noticeable"? In this I mean that in the last few weeks it feels as though tumorboob doesn't hang differently from the ok side. Man, I am not describing this right. I guess at diagnosis I became hyperaware of the bad side feeling heavier or different, and now that seems to have dissipated recently. Nipple is just about gone (its like watching a sunset, hahaha). But the overall softening as it were makes me less anxious to want to have it removed now.
I hoping that either start of next month or for sure in February once my next scans are through that new MO can sit down with all the cards on the table and we can see direction of travel to date.
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Hi Sondra. My nipple is totally sunk in now, and I can't see it when I look down. The primary tumor can still be felt as a hard lump. It shrunk by about 50% with treatment, and has not grown larger. I have more than one breast tumor, though.
I think softening is a good sign! I would be encouraged if I were you. Good luck with your next scan and your new MO.
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NineTwelve- Well put. Good luck on your scans.
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Rosie, this time of the year I start reviewing my good/not so good memories, last year when I created my account here I wanted to stand on my feet and do simple daily activities without help, so I beat it
I am grateful I am in better shape now. Snowdrop reminds me many good memories of good times I had several years ago. 0 -
Snow-drop, Thanks. Here's hoping for continuing good shape 😊. Happy memories are such a gift
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Rosie thanks for your kind words 🤗.
Ladies this website gives some ideas about variety of vegetables that we can use with hormone drugs:
https://foodforbreastcancer.com/articles/foods-to-eat-%26-avoid-during-aromatase-inhibitor-treatment
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Snowdon- thanks for the article. I like the possibility of reducing joint pain through diet, and it's something that you'll really know if it's working.
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Illimae: last few nights I am reading about the lady you referenced “Zarovka“. What an amazing woman. If I’m reading Zarovka‘s bio correctly, she was de novo. Thank you for bringing up Zarovka. She gave so much to BCO and continues to do so with her memory
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Tinkerbell, she was amazing. She tried and reported back on everything from exercise, fasting, sauna treatments, T-cell therapy that she flew to Japan for, I think. I think she also had a background in science, if you come across the post where I notified BCO that she had passed, you’ll see how many of us thought she’d crack the mystery. Her efforts were so valuable to me in confirming the role of luck in this disease.
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Z was a warrior , Z was brave. Z was smart oh so smart. Even in her work in real life she was ground breaking. She wasn’t just that way here, her work was valued by many. She helped launch a company and she was on the board of it. She was truly amazing. I agree with Mae. We thought she’d be the one to figure it out. She is missed. She did give all she had and then some. I was proud to have known her here. It was a hard loss.
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Yes, I was still in lurking mode before she passed, but her posts and the Stage V exercise thread were so comforting and inspiring to me at that time . I was still adjusting to my Stage IV diagnosis and it was good to see people with a lot of hope and the motivation to persevere.
I was so very sad to read that she had passed. Cancer SUCKS
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Sometimes a BCO member really touches our lives here. So many are missed. Some really had their spiritual life together and others were so on top of their treatments and every member brings something. I'm so grateful for this community.
I have a scan this morning in a few hours. I finally talked to my oncologist about all the questions and concerns I had, told him I was depressed and anxious and crashing. He asked what day I'm in on my Ibrance cycle and when the crash started ("yesterday" I admitted.) He told me my counts were under a thousand and even though it was only day 17 on the 75 mg dose, I needed to discontinue and give my body a rest. Weirdly, I had been having nonstop shoulder pain (injury related), and after I opened up to my doctor, that pain left. It seems like I'm one of those people who needs to manage their negative emotions for best pain mitigation.
Spent yesterday applying for disability (again; my first claim was denied) and retirement benefits. Looks like my post-retirement insurance premiums will be nearly as much as my monthly rent.
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Luck, is that what determines who survives and who doesn’t? It’s so difficult for the rational part of my brain to accept that. I have seen better treatments help to prolong survival in the 9+ years since my dx. It seems that there are more living longer with mbc, yet luck still seems to play a very big role in how things go. Now, I understand that it’s not really luck. There is something going on with long time survivors that hasn’t been discovered yet...
I’ve read so many different personal approaches to dealing with mbc from bco members. I’ve searched member’s dx line to see who “looked” most like me. Yet despite similarities our paths most often diverged at some point. And I feel guilty, very guilty about my own survival yet I am another face of mbc. I do virtually nothing extra to prevent progression (other than conventional tax). No special diets, protocols, exercises or alternative treatments. In the eyes of some, I am too passive in dealing with bc. I am completely comfortable with the path I’ve chosen but I still feel guilty. How is it that some do so much to live only to have something as nebulous as luck determine their fate?
My apologies for rambling but mention of zarovka’s passing reminds me of how unfair this disease is. May her memory be a blessing to all who knew her
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exbrnxgrl, luck probably isn’t the only thing but luck is my go to when I can’t find another reason for the unexplained. I’m not a “ god’s will” person, so luck it is for me. I feel bad sometimes too, I read of all the extreme extras people do as I blow through 1/2 bag of skittles while watching murder mysteries.
Nonetweleve, I got your dress ready for scans, jumping in for pocket duty
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NineTwelve, I’ll be in your pocket with Mae. Good luck with SSDI. You deserve to have it.
Exbrnxgirl, I am also thinking it’s luck. Considering I went so long without treatment and here I am 7.5 years later still kicking, it’s anybody’s guess why.
I eat whatever I want whenever I want. I’m not into the whole diet thing where it will kill the cancer. That’s my choice I don’t feel guilty about it. If I did that without treatment and I’m still here, what difference would it make to switch now. Granted, I’m not gaining any weight at all from what I eat. I have a feeling it’s because the food I put in isn’t giving me any nutrition. My Alk. Phos. Is always low. One of the reasons can be malnutrition. I have had anemia since before diagnosis. It’s not iron deficiency anemia. We tested all of the iron stuff.
Just so everyone knows how I feel, diet is a personal choice. I don’t judge anybody for taking the nutrition route, and I hope they don’t judge me either for how I eat.
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Thanks all. I often have huge conflicts between my rational side and my emotional side. Yes, we call it luck for now but I hope that one day we discover exactly what that luck is, i.e. the biological/chemical and/or physiological reason for that luck.
My diet was quite healthy prior to dx and I did try a more restrictive diet initially but that made my life rather joyless so I went back to my usual earring patterns. I make no judgment on anyone’s diet either but it is hard to see people fretting over everything that passes their lips. It’s just unfair to see some work so hard to live and lose their lives while slackers like me lead virtually normal lives. Again, I know life is not fair but why, just why..
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Before diagnosis I was a gym rat. Running 6 miles a day 5days. A week in an hour. I was in the best shape of my life the day I was diagnosed, I was at the gym and did my work out for 1.5 hours. Just an ordinary day for me, if it hadn’t been for that lump. If it hadn’t been cancer. They thought it was a complex cyst. Gee thanks. Denovo and didn’t even know it until two weeks later, already into AC chemo red devil. I’m glad I went aggressively at it. At first they weren’t going to. It was going to be take this daily. One doctor took control for me and I have been Nead for 4.5 years. And I’ll welcome many many more.
Karen~nine years is amazing. Don’t give it another thought why. Be happy. You’re in the 4% group. That’s tremendous...... I’m thrilled for you.
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Thanks micmel. I am probably struggling more than usual because someone who was a parent at my school had bone mets and was recently dx’ed with liver mets. She has 3 children, the oldest in high school. We can’t see each other right now but text often. It’s so painful to watch her deal with this at such a young age. I have no death wish, but I would trade places with her in a minute. My children are grown and settled. Her children still really need her. Yes, that’s life but the emotional side of me struggles with how unfair that is
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exbrngrl and micmel you both are inspirational and giving hope to those of us that just started or are in first year of treatment (I started ibrance December 5 last year, a year in treatment?!) I want more years. Knowing that there are people who respondwell to treatment, give us hope. So nothing to be guilty about if you are looking that way.
I’ve been anxious about scans/ mri/ pet reports and kept (still do) the size of tumors recorded in my notebook so very concerned about any mm changes/ new/ old whatever. During one of my long waiting scans a technician started to talk about his wife and how they were worried during her treatment as BC patient, when I told him mine is stage 4 and stubborn tumors not going to shrink. He said how do you know, I replied scans proved it so far. He laughed and suggested to look up for scan limitations, albeit he explained his own experience as well. Today I wanted to share with you the article but I found something else that might be more interesting than the one I read before, I don’t save any articles, just fed up with this disease and enough to take some of our pc’s space..
https://cancergrace.org/post/did-my-cancer-grow-10-minutes-limitations-ct-scanning
Also during targeted therapy some of cancer cells may release from their colonies (tumors) or targeted therapy won’t allow them to stick together then they possibly enter to blood work, it is not necessary that those cells are able to find a place in the body to grow fast/ make a new tumor that is why sometimes TMs show higher numbers but MOs seem to ignore them but at the same time don’t bother to explain the fact. Correlation TMs measurement and scans and physical examinations are mostly recommended, and luck, Maybe?
I thought these might reduce some of your stress at some point.A weird bulge has been on my shoulder for a while plus limited movements raised concerns of the orthopedic, his first thought was adhesive capsulitis & biceps tendinitis but he never said it is not related to cancer, so he suggested first pt therapy and then evaluate the improvement, if no improvements happen in a time frame, surgery is an option, which I hope not. after a long waiting for authorization I could see a physical therapist yesterday, while the therapist doing massage+cold therapy, I understood how much pain is in there.
Happy Friday everyone 👋
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Karen, I’m so sorry about that parent at school. I will send good thoughts that family’s way. There are no reasons I can understand why it would happen to a needed mother. I’ve seen women diagnosed at pregnancy, it can be a truly maddening disease. I hate it. But I don’t hate how well you and I both are doing. You have double time on me, and that makes me hopeful. There is no rhyme or reason. I miss my strength. But I feel blessed to be doing well. I hope it goes for years and yearsfor us both. I just want a cure.
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I just found out about this topic and didn't know that it was here!!!
Well, I did it! So far, so (almost) good. Today is the beginning of my 19th year after being diagnosed with Stage 4 MBC de novo. I started out with metastasis to my liver (now clear), then about 11 years ago, I had metastasis to 2 chest nodes (also cleared). Now it seems that I have metastasis to my ribs. I am still hanging in here but 19 years of chemo is a very longggg time. Besides being afraid of death by cancer, I am also haunted by Covid19. As I hibernate as much as possible....
I am currently on Xeloda and Herceptin, but that may change after my April CT scan.
Denise
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Hi, Denise! De novo Stage IV for 19 years!!! Wowww, that’s awesome. I think that’s the longest I’ve heard of. If you don’t mind me asking, how did you find out it’s in your ribs? I’ve been feeling some pain in my left rib, and it’s been intermittent, but lately there is always a twinge. Did you have pain in your rib or ribs?
I’m sorry about having to hibernate. This has been a tough year. I hope it settles foe everyone by the spring and we can get back to some sense of normalcy without COVID.
It’s a long wait to April. I hope you stay with this thread and keep us posted.
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Denny123: Wow, truly amazing. Did you add anything else as far as diet, supplements, exercise, which you give credit to enhance your treatment? Even though I am not Her2+, a lesson can be learned. I'm trying to make a few lifestyle modifications. Mae had referenced having some luck doesn't hurt as well..
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My thanks again to snow-drop who told me about this topic. I have looked in the past, for any topics related to me, but I missed this one!
I have been on this forum since 2004, way back when....
KBL...I have had broken ribs 4 times in 3 years...for no real reason. The last break was when I was putting on my undies! Seriously. I had a break in my left ribs #6 & 7 about 3 1/2 years ago, and subsequent breaks were on my right side. The worst was when I got out of bed and broke 3 at once. Ouchy.
I do have osteoporosis and have been on bisphosphonates for 20 years, currently on Prolia. But I am now also on a nasal spray in addition to Prolia. Anywho, my latest CT scan showed something abnormal in my left ribs 6 & 7, so a bone scan and an X-ray showed a high probability of rib mets. I am only on 2,000 of Xeloda a day at 7/7 plus Herceptin. My onc is waiting to see what my next scan in April shows.
Tinkerbell...since I am on Xeloda, with sore hands and feet, that pretty much eliminates exercise, except for my recumbent bike and maybe one lap a day on my treadmill...until I get my usual "toe-pit" cracks. My onc told me not to exercise at all because of my rib breakage. And my new Dr, an endocrinologist...agrees that I shouldn't exercise.
I have exercised all of my life and was in great shape with a very healthy diet when I was first dx'd. (And I never missed a mammo). If yu can exercise, you certainly should take advantage of that ability.
I eat everything in moderation, but no alcohol at all, and no alternative "cures", supplements, herbs, etc. All vitamins or minerals are approved by my onc. I do eat sugar since it doesn't feed cancer.
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Thank you, Snow-Drop for letting Denny know. My goodness, that has got to hurt when you break them. I definitely don't feel my ribs are going to break. I've had widespread numerous mets in my spine that went undiagnosed and just started Zometa four months ago. I was working out all the time between 2013 and when I was diagnosed. I am grateful I didn't break anything. I hope you don't have any issues while you wait for April. Thank you for sharing your story.
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Denny, Thanks for letting us all know you're 19 years in. That's amazing! Wishing you many more years of enjoying life. 😊
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Denny, thank you for sharing your story, I wish you all the best for many many more years, congratulations again for this 19 years, it's really great and admirable 🎊
Ouch for broken ribs, I can understand the pain and discomfort, my L-spine broke as tumor non-stop growing and I had to stay less- move/ no- move over six months, risk of paralysis. Best of luck with April scans. and please keep checking this thread 🤗.
KBL thanks to you for creating this conversation room 🤗.
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Denny,
19 years! Congratulations and may you have many, many years to come.
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Denny: Thank you for your input . I appreciate it greatly hearing your perspective on lifestyle.
The journey we face is unique recognizing different stages mentally and physically. However there are a lot of commonalties in reviewing posts. Exercise stands out if able to do the same. Everything else appears to be a "crap shoot", some MOs recommend this or that based on your treatment or side effects. Having a balanced diet, of course, Sugar is one of those areas in my mind I go back and forth with, but in the end for me, moderation in all things I guess, no magic bullet. Positive attitude but also being realistic with my mental health needs, this can be challenging... Sleep hygiene, this is a major struggle, a lot of folks take Melatonin on the boards. I tried it even at the 20mg dose, still not effective for me.. So I circle the sleep remedies hoping to find something that lasts long in duration. Well gonna try to get a walk in today, Incremental change, right... Have a good day everyone...
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