If you are not Stage IV but have questions, you may post here
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I apologize for whining in advance. And I truly apologize for those of you who have much much bigger issues as I sit here and whine about what is probably a proverbial hang nail. With all of that being said...I am still having extraordinary level of fatigue. I know I've been through a lot but in al honesty I haven't really. I didn't have chemo or rads and I'm no longer on tamoxifen. I had the BMX is June and I didn't haven't this level of fatigue. I just feel like I'm tanking for no reason. I'm 43 and was in pretty good health. All of my bloodwork is great. No signs of any issues. But just to give you an example, I went shopping with my daughter for a few hours on Saturday and yesterday I wasn't able to do anything at all. My husband said he was a little scared because I was walking like I was drunk and he could see the effort I had to put in to even move my body. I couldn't even form a complete sentence. I have the same symptoms as my mother who is 79 with multi system failure. This is crazy. The reason this is so concerning is that I was fine in September and now I'm tankin but all my labs are perfect. Any idea
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Mom2four+, not sure why you are posting on this thread. Are you worried you may be Stage IV? Doesn't look like you are at high risk for that.
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sorry, wrong thread
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My wife has spinal mets and is on Femera & Zometa .the mets are scleroticmy wife that Radiation to spine from D12 to L3 as she was having unbearable pain in that area .she took -5 sessions that ended on 6thDecember -16.Now even after 2 weeks she would have pain in radiated area if she bends or exerts her spine or sits for longer periods.what would be reason for this pain ?PLZ HEL
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Hi many. Even though your wife has had the radiation it can take a few weeks to be fully effective plus there is damage to the bone from the mets which will take time to heal. She needs to try to avoid things that cause her discomfort for the time being with the hope that it will improve as time goes by. Rads are not necessarily an instant fix but they do help.
Love n hugs. Chrissy
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?
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Hi Mommato3 - I am a Stage IIIer but Very high risk - so I am constantly looking for information on this very subject. And, am (also) on Arimidex.
I read somewhere that AIs can potentially raise ALP levels...but I am definitely not an expert. I have achy knees - too. (Have had bad knees for the past 10 years - so nothing new) But - I do feel they are a little more achy since starting Arimidex about 6 or 7 weeks ago...
From what I understand...mets are VERY unlikely to go to the knees (much less start there!)
It's great news that your other labs are normal and your left breast came back benign!!! That must have been very stressful to endure.... I don't know if stress raises ALP - but would NOT be surprised!!!
I sometimes wonder - if lab values - normally fluctuate - but we would NEVER know this - if it weren't for the constant monitoring of our lab values...
Anyway...I am glad your MO ordered the scan... For what it's worth - mine was completely normal but my MO wants to do another one - one year from that one....anyhow!
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Hello all,
Hope everyone will have an energetic, pain free and worry free weekend. What a blessing that would be for all of us!
I have a question about lumps and bumps. My cancer was in the left breast but I opted for a bilateral mastectomy, no reconstruction. At my last MO appt in December 16 the doc noted a hard, smaller than pea sized lump, along the incision line on right side. She said it felt like q stitch. Since then the lump is now large pea sized. I know this could be an undisolved stitch- which amazes me 2 1/2 years post mastectomy. Possibly a cyst or possibly fat necrosis. But possibly a new met.
If my MO is still unconcerned at my January 18 appt what type of further testing should I push for? Just need confirmation it's notching to worry about, ya know?
Another concern I have is the pain from bone mets in humerus and shoulder is back 16 months post-radiation. I understand that radiation doesn't necessarily mean progression, esp since my last bone scan in October showee no new mets. Kind of worried though that the pain is back at same time my lump along incision seems to be growing.
Any insight, personal experiences with the lump/bump thing will be much appreciated as well as any tests I should request in case MO still not concerned.
Thanks so much!!
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Hello, I am new to this board. I was diagnosed with multifocal invasive ductal carcinoma grade 2, ER+ PR+ Her- in July 2016. I underwent a single mastectomy with DIEP flap reconstruction in August and are believed to be Stage 1. My mammaprint came back high recurrence rate so I started chemo in October 2016. I completed 4 rounds of dose dense A&C and just finished my 2nd of 12 weekly Taxol treatments. I ended up in the ER a few weeks ago for breathing issues and something showed up on my CT scan. After a bone scan and MRI of thoracic spine they found a 1.2cm lesion on my right T11 vertebrae. I am now waiting for a bone biopsy to be scheduled.
I don't know for sure if I have mets to the spine but I saw this forum. Has anyone ever heard of a spine lesion in a person with breast cancer being benign or are they all typically cancer? My doctor tells me the fact that I have no pain and that there is just one is a good sign it may not be cancer. I know it is wishful thinking but I am totally scared out of my mind. I am 38 years with 4 young kids. We told our kids we caught this early and I would be fine because that is what we were told. The waiting piece is always the hardest part of all of this. I don't know how to relax and not think about this until I know.
Thanks, for your help.
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Hi mjrst, welcome to BCO. Sorry you need to be here but really glad you found us.
I understand just how worried you are right now and while it is a possibility that the scans showed a met it is also a good possibility that what it showed is something totally benign. Please try to take a deep breath and let the worry go as you are really only upsetting yourself on a possibility.
Should your biopsy be possitive, and I'm not saying it will, please be reassured that it is possible to get to NED (No Evidence of active Disease) as a stage IV. I am living proof, seven and a half years with mets to bone, six of those years NED.
Hang in there lovely, just take one day at a time and try not to project the possibilities just wait for the biopsy answers and go from there.
Keep coming back if you have more questions/concerns and please let us know how you get on.
Love n hugs. Chrissy
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hi Chrissy,
My name's Christina. My mom who's 57 was just diagnosed with breast cancer liver Mets in September. She's doing really well with her chemo. Her first chemo they did a very weak one because her blood was so bad. It reduced the tumors by 40 percent. They were very shocked at the immediate response. Now they can no longer feel the tumors. I have hope and I pray.
My question to you is are there any supplements or foods that you believe have helped you remain Ned?
We have been giving her beet juice and I also juice carrot juice mixed with apples. I also have been giving her cabbage juice. Which she may or may not enjoy. Lol
Any recommendations would be appreciated.
Christina
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Hi, Christina. You might like the book Anti-Cancer: A New Way of Life by David Servan Schreiber. It has a lot of info about food. According to Schreiber, cruciferae (including cabbage) and alliums are some of the best. Be cautious about supplements during chemo and keep the oncologist in the loop. Other things that may help are exercise, sleeping in a very dark room, de-stressing (meditation, laughter, nature, etc.), having social support, and avoiding toxins and xenoestrogens.
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Hi Christina,
Talk with your Mom. Listen when she needs to talk, give her a hug...laugh together, repeat. It's a lonely, scary illness and my daughters' friendship has been the single most influential factor in me feeling life is worth living. It's a lot for you to handle so find some others who are in a similar situation and get some support for yourself, too!
And exercise and eating well. These have a daily impact on whether I feel well during treatment. The book recommended by Shetland has been my manual for living.
Warm wishes!!
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Hi there. My mom was diagnosed with HER2+ IDC almost 7 years ago. She had a single mastectomy, radiation and chemo. She had a recurrence 4 years later as stage 4 with mets to the chest, neck, jaw and lymph nodes. She had chemo again and was NED for almost a year and a half.
Now her scan shows new small nodules in her lungs since April of 2016. They have not changed in size but her onc recommended she resume herceptin because he is nervous about the nodules. As of now the nodules are the same size. He theorizes that the herceptin has kept them at bay. On the other hand I am wondering if the nodules are benign. She is tired of treatment but scared of mets. Anyone had experience with this?
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Almasi, your Mom can always ask that they be biopsied to stop the speculation and give her and her doc a clearer picture on which to make decisions.
Hopibg they truly are benign nodules.
Love n hugs. Chrissy
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Thanks for the recommendations. I never even thought about sleeping in a dark room. Yes I will pick up a copy of the book. Between myself and her grandchild, we try to keep her busy and share some laughs. Thanks for your help. Bless you all
Christina
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Oh, a grandchild is very good medicine, indeed. For anyone reading who wondered about the dark room, it is to allow natural melatonin production and a normal circadian rhythm, which may be anti-cancer.
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Morning ladies,
On 12/28 the pain started in my upper abdominal area. above the belly button to the right but below the ribs. The pain is not constant/all day but frequent occurrences through the day. I have not observed any patterns such as pain occurring after eating, or sleeping on one side or with activity or when pressing down on the area. The pain is a little harder for me to describe – some times a sharp ache and sometimes it feels like pulling. I had a chest scan early September so not sure how far down the chest it goes to see the liver area. The only thing it said "small hiatal hernia is present. The visualized upper abdominal organs show nothing significant."
I saw my onc mid December and labs seemed good or they didn't say anything:
August labs ALT = 26 / AST 26
December labs ALT 38 / AST 31
I saw my oncologist yesterday and he wants to proceed with a scan to be safe - it's scheduled tomorrow at 9 am. I was curious if there were others that could describe their liver pain. I am not freaking out yet as the pain isn't there all day and the frequency isn't increasing day over day. I'm over here hoping for a busted gallbladder or something
Any feedback is welcomed!
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Hi jenjenl, I'm no doc but your mention of a small hiatus hernia made me think that the pain you feel is from that rather than mets but I'm really glad that your onc is checking it out just in case. Good luck with your scan.
Love n hugs. Chrissy
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I can only address the issue of supplements, which I have experience with, as I have not had liver pain and do not deal with her2+.
I began taking supplements several months *after* chemo, surgery and radiation. I cannot say for sure that they keep me stable, but I feel proactive taking them. I consider them complimentary treatment to what I already had and to go along with the Arimidex I take daily and the zometa iv I get every three months. The arimidex is what I attribute stability the most.
Here is a photo of the supplements I take. The vitamin D I get on Amazon. The others I get onlineat Vitacost. Combined, they cost less than $150 for a year's worth.
Also, I agree with Shetland. The Anticancer book is great reading. Your mom is blessed to have a caring daughter in you. Best wishes for both of you.
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Chrissy, we did discuss this and he mentioned the pain would be in the mid chest area.
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Chrissy,
Scan went fine, called for results today (24 hr turn around). No cancer. They think it's the hernia but are a little perplexed that i don't feel the pain around my belly button but further to the right. The oncologist didn't have a desire to explore further since it was not cancer related. They scheduled me an appointment with a general surgeon for Tuesday for her to look at the scan further and confirm it's from the hernia. So, I'm obviously pretty pumped. xo
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Jen- didthey say anything about the hernia being related to the flap surgery? Just curious. I had an abdominal hernia repair in 2013. It was simple, so if that's what you need, I hope it's as easy as it can be. I'm planning to have DIEP flap early this summer...
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That's one thing I have on my list to ask. When they did the DIEP my BS did work on my actual abdominal muscles too I guess my jumbo kids tore them apart? So I do wonder if that was part of it, I'll ask and report back
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Jenjenl I'm so happy for you that there is no cancer! Good luck with your visit with the surgeon and I hope he/she can give you some answers.
Love n hugs. Chrissy
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Thanks for the information regarding the supplements. I think I will go out and get her some of these. She just had a scan she is ned. we cant get to excited as this could be short lived. the doctor said this was a shocking scan. her liver tumor was 7cm and her breast tumor was 10 cm. She is triple negative so they didn't give her any pills or anything. she goes back in a month to check.
My friend at works takes those changa mushrooms for her lupus. That might be something I look into. I think you can get tea off amazon. My friend also gets her water tested and makes sure the ph level is correct. I guess it has something to do with alkaline.
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Some details and terminology may not be exact but I'll do the best I can. My mom has been fighting breast cancer for 7 years, she was diagnosed in 2010 when she was 51 years old. She has one of the worst breast cancers you can be diagnosed with, called Triple Negative Breast Cancer. It has come back every 18-24 months since then, I won't go into every time and what happened because it would be the length of a book. I always felt like this cancer thing was going to be something that would flare up, and she'd fight it and that would be that, nothing would really happen. Through all these years, there's been ups and downs and up and downs. We were always told that the cancer was in her lymph-nodes, as long as it wasn't in a major organ, that was a good thing, scan after scan and it never was in a major organ- more cancerous lymph-nodes would pop up and some would even go away, we knew things were getting more serious because there was only one medication left for her to use to treat her cancer. That was scary but through it all, mom continued to be positive. Last summer, she started getting a lot of swelling in her leg, they couldn't figure out why, doctors appointment after doctors appointment, it was assumed it was from the immunotherapy treatment she was on - through the fall it continued and then it was both legs, then she started physical therapy. At Christmas things were great, mom was a little tired and the swelling was bothering her, but her and I cooked and she gave the kids all of their gifts. And then the week between Christmas and New Years is when everything started happening. My mom called me and had said her dad and I were on their way to a regular routine appointment with her oncologist, no worries, nothing to be concerned about, just a check up. The day before a check up my mom gets blood work. She called me a few hours later and said her kidney functions were off, they thought maybe dehydration, so they sent her to the hospital to fluids, after another blood test, something was still not right, they did a few more tests and discovered cancerous lymph nodes in her kidneys that were causing a blockage. They scheduled surgery right away to put stints in her kidneys. We were nervous about surgery but also positive because this meant that the swelling would go away-finally, they figured out what was causing the swelling in her legs. She had surgery. Afterwards the pain was awful. I have never seen my mom or anyone in so much pain. We thought it HAS to be from the surgery, it has to be, she wasn't having this pain before surgery! But whenever the doctors would come in, they would slightly shake their heads at the pain being from surgery, just enough to cause us concern that maybe it wasn't from surgery, maybe something else was going on. They wanted to do a special test in her back that would take a couple hours, we were told the cancer was in her back but just to pray it wasn't in her brain. Just pray, so we did, we kept praying. They never got to the scan of her brain because the scan of the back showed that the cancer was in her spine and not just in one spot, and that's when they told us that they can manage her pain but there's nothing they can do. Since that day, our lives will never ever be the same again. My mom is now home, hospice comes twice a week and we are caring for her and spending as much time with her as we can. They gave her 4-6 weeks and I I'm really confused. She looks great, she's walking, talking, I mean, she has a morphine pump but should we be getting a 2nd opinion? I'm so confused, she's only 58, she looks great, I just can't imagine 4-6 weeks. Is she just going to not wake up one day?
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I am so sorry for all your Mom and your family and friends have gone through.
The doctors obviously will have to tell you specifically what they found. It sounds like it could be they found cancer in her spinal fluid which does shorten a person's lifespan significantly. I am sorry if they did not make this clear but the doctors need to advise if this is the case. My guess is strictly that, a guess. For now, enjoy your Mom as much as you can, be glad if she is walking, talking and feeling good. Cherish that no matter what the doctors tell you. It is a blessing that she can at least feel good. I hope they clear everything up for you. Hugs for you and your mom.
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yes, you are correct, it's in her spinal fluid. I didn't know the difference between spine and spinal fluid when I wrote this, my brother was telling me last night that there's a big difference. Thank you for your response.
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i would maybe get a second opinion. There is one client I know, his wife is going to Ottawa to have some kind of stem cell surgery. They implant them, then radiate it. Then they do it over again.
My mom also has cancer. She is OK but I dread the day when things get bad. I try and do everything I can. One of my father's co-workers wife was given a few weeks to live. They did chemo daily, she changed her diet. Try some beet juice. Now she is cancer free. This was ten years ago.
All the best to you.
Christina
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