TRIPLE POSITIVE GROUP
Comments
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Different oncs count the year differently - I had a total of 17 and missed none, but I have seen others have 18. I would seriously doubt whether missing that 18th dosing is going to matter. It may indeed have to do with the 12 month elapse and insurance if the 18th dose falls outside that window.
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Hi Ladies, I am on Prolia but just found on my calcium is in the high level. Terrified this means my cancer is back and spreading. Has anyone here at high calcium while on Prolia?
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tld - what is your Vitamin D level? If your calcium is high and Vit D low, ask your MO or primary care to run a parathyroid panel.Is your higher calcium a sustained high, or is this a one time event? My calcium was occasionally above the range during the time I was on Prolia but it always came down again.
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Thank you so much for responding! Calcium is 10.4. I don't know Vitamin D. I am shaking, I am so scared. This is the first time it has been high but they have not checked it for a while.
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SpecialK, do you remember if yours was near 10.4? If it happened to you, and all was well, that will give me some hope right now.
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Absolutely, it has been that high, I'm so sorry you're scared - try not to worry about a single test result. My calcium jumps around but hovers pretty close to 10 most of the time. The Vitamin D test is a blood draw and just takes a day or two for results. It is a send out from my MO's office, done by Quest or LabCorp. If you're super curious you might even be able to do a Vit D as a walk in at a place like that. Have you had a DEXA done lately to know your density status?
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My vitamin D runs low so I take 2000 a day. I went in for a port flush yesterday and had a sudden shortness of breath and chest pain. They called an ambulance and I was swiftly taken to the hospital because the NP thought I had a pulmonary embolism caused from the blocked port (for some reason, it would not let blood flow). No blood clot showed up in ct scan and the pain eventually went away but the scan did show two nodules in my lungs. Also, the bloodwork looked fine other than the calcium. I have osteopenia, hence the prolia. I had my 2nd dexa scan last fall and it was fine. I had a friend die this morning from breast cancer - hers had spread and she suffered for quite a few years. I guess yesterday's events, the nodules, the calcium level, and my friend passing away, have sent me over the top with fear this evening. I'm sorry for sounding so urgent - if I could hug you right now, SpecialK, I would!
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Tld2017 - I took a look at my calcium test. Mine report (below) shows that normal range is 8.5 -10.5. I looked through several of my tests, and like SpecialK, mine jumps up and down. FYI - Quest and LabCorp have a feature that lets you chart blood levels from multiple tests.
My condolences for the loss of your friend.Calcium measurement (Calcium) 9.2 mg/dL 8.5 - 10.5 0 -
The hospital lab marked it as high (their lab said it should not be higher than 10.2) and my oncology NP noted it because I'm on Prolia and it should "not" be high, and I made the mistake of googling it and freaked out at 5:15 tonight after she was already gone for the day. Grateful for your response as well! Thank you for taking the time to respond!!
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tld - my goodness, you poor thing! I wish I was there to give you a hug! That is a LOT to process. FWIW my DH has benign lung nodules, very common, a number of people who post on this site do as well. For my DH some arelarger than the threshold for concern, but they just kind of hang out there doing nothing. That is sometimes the problem with scans - they reveal things that are doing that but now have to be investigated, and cause worry. One of my good friends often had issues with two way flow with her port, but did not have the physical reaction you did - that had to be scary for you! Nsbrown posted above about range - do you have the actual lab report that shows the range they were using?
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i just checked my labs and the standard they use is 8.6-10.4 as normal range for calcium
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Depending on the testing platform the high end of the range varies from 10.3-10.5, I believe. Calcium results should be age adjusted though - in your 20's you can get close to 11 and still be normal, but at 50 you should be closer to 10, and as you continue to age you should be in the 9's. Parathyroid issues are suspected with high calcium and low Vit D levels. There are several threads here on BCO that have posts about members with this situation.
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The range they have on the report is 8.8 - 10.2 for calcium. I'm 54. I am just floored that it could still be high while on Prolia! I will definitely search through older posts! Very grateful for this forum and especially you ladies that have responded!
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Hi everyone! I was wondering if anyone knew of a product that gave the same protection as a port pillow,that would be put on a seatbelt, but the size of a strap cushion for purses? I need to start going back to wearing crossbody purses like I used to, but my favorite side is where my port is. I would switch over to the other side but the cancer spread to that lymph node where the cancer used to be .
Thank you!
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Phoenixrose8 - check this out from Amazon
Wanty 1 Pair of 2 Black Color Neoprene Multipurpose Comfort Shoulder Strap Pads Shoulder Cushion Pad Protector for Laptop/Travel Bag/Messenger/Boxing/Car Seat Belts Protect Pads (black)0 -
Hi, I hope everyone is doing well and having the same beautiful weather as I am today. 🌻
I met with my gynecologist last week. Because I have endometriosis, she's been pushing me to get a hysterectomy for the past couple of years. At this last appointment, she also highly recommends I have my ovaries removed. My appointment with my oncologist got bumped forward so I haven't gotten his opinion but I asked my surgeon and she said that if I did decide on a hysterectomy, she agrees that I consider the ovaries as well but only if I was already planningon it.
I'm leaning towards doing it but was curious if anyone could share their experience. Up until chemo started, I took the pill continuously to stop my periods to control the endo and have now been in chemopause so both doctors think my menopause symptoms will be minor. I am worried about weight gain and it being harder to lose. After hitting my 40's, I've already been seeing the weight creeping up on me without any negative changes in my eating habits or activity level. 😕
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I had my 6th HP treatment yesterday and experienced pancreatitis pain. It last about 90 minutes and I didn’t go to the ER. I’ve had pancreatitis in the past, had lots of testing and they’ve chalked it up to idiopathic cause. I eat a low fat diet, don’t drink and had my gallbladder removed 9 years ago. Anyone else experience pancreatitis while on chemo?
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Ugh, Nsbrown54. Pancreatitis is super painful. I had it 18 years ago when a gallstone escaped from my gallbladder and got lodged in my bile duct. (Also had my gallbladder removed.) No, I didn't have pancreatitis during chemo, but I did have some painful cramping after my 11th infusion of Taxol. I wonder if that was pancreatitis? I chalked the cramping up to a stomach virus that we all got around Thanksgiving of that year. Hope it doesn't come back!!!
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nsbrown - I didn't have any issues with that, and sorry that you had pain, ugh. Mostly wanted to post because of your new cute avatar - look at your hair!!
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Hi ElaineTherese - I was surprised by my attack, especially since my liver enzymes have been consistently normal in blood work. For me, pancreatitis pain is the worst pain I’ve ever experienced, even worse than labor and appendicitis. 😱
SpecialK - Thank you for the compliment. 😀0 -
MsMurphy - I had both ovaries and uterus removed at age 37 because I had polycystic ovaries. I have never been sorry although wonder now about the years of HRT. One less place to worry about cancer is my feeling at this point. Will be interested in MO's response but I don't understand why one wouldn't take the ovaries as well. Ovarian cancer is so hard to detect until late.
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Nsbrown, like SpecialK, I noticed your new "do" right away! It looks great! I'm sorry you're in pain, though, and hope you feel better soon.
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Hi wonderful ladies,
It’s been quite a while since I last popped in, and even longer for writing. Maybe a few of you still remember me. I was happy to see a few names from years before still doing fine!
So I decided to do a quick update about how I feel nowadays, maybe it will encourage some of you. 4.5 years after diagnosis life is great and my health seems to be the best it’s ever been. After shaking off that terrible pain in my feet (no idea how, it just stopped), exactly two and a half years ago I changed my lifestyle a bit. I started exercising every single day and lost 54 pounds. I still exercise every day, but can’t seem to get rid of the last 12 pounds...
I feel much better now. I went to school to become a beauty stylist (lashes, makeup, skincare and dressing for your body), so now it’s my love project to help women feel amazing. Photography is still my main job and passion, and I can combine it with my new skills.
My two beautiful fur babies are also well and one cannot ask for better cats. I am grateful every day to have them. They helped me so much, and still help me every day.
Maybe you remember that my mum also had cancer (ovarian). She was given 5-6 years tops, if she was lucky... but she fought for 11 years. And honestly, if her first doctors had been better, I think she could have fought for even longer. I’ve lost her a bit over two years ago. When I saw that her battle was coming to an end, I started exercising on purpose: to help me cope with stress and heartbreak. And it did, maybe that’s why I’m still sticking to that routine.
I have read about the divorce and depression. I know it is tough, can’t even imagine how tough. But maybe exercising could help: it really turns your mind off and the endorphins also help. It could be worth a try.
Oh well, I have written way too much, sorry! Last bit of fun fact: I am still on Tamoxifen (1 more year) and got my last Lucrin shot a year ago. My period hasn’t come back yet (doc said it won’t as long as I am on Tamoxifen). Well, I got my Covid19 Pfizer shot... and the very next day I was menstruating. It only lasted for 3 days, and we have no idea whether it was a “one time thing” or it started something for real in my body... but I was so surprised after over 4 years to see my body work...
Hugs to you all, and just again, thank you for being there for me when I first found this group. You helped a lot.
Love,
Photogirl
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So glad to hear good news Photogirl81 and that you're feeling good.
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Hello, all, I have a radiation question and I thought I'd post here rather than the rad board in case my issues are related to my ongoing TP therapies.
I finished rad on March 1, and I handled it with relative ease. I had one area about 2" by 3" on my collarbone where the skin peeled, but otherwise I was relatively unscathed during the course itself. However, that area, which appears completely healed and normal, continues to burn and itch if anything touches it. It comes and goes in intensity. I have slathered on Aquaphor multiple times a day and it does not appear dry. I can feel that one area feels smoother, so maybe it's still dry, but the symptoms I'm experiencing are severe and seem odd given the skin's normal appearance. When I cannot resist scratching it (while asleep, for instance), as soon as I stop scratching I get these deep shooting painful itch sensations. I'm still getting Herceptin/Perjeta, I started Trelstar on March 8, and I started aromasin at the end of April and the symptoms do not seem to be tied to any of these dates (but I know some people very rarely can have a late rxn to rads triggered by another substance, so I mention it here in case anyone thinks maybe that's what's going on). Also since radiation, I’ve had lymphedema in the treated breast. Had four lymph nodes removed with lumpectomy. Not sure if it’s radiation-induced lymphedema or it’s its own thing, but just throwing that out there
What fresh hell is this??? Has anyone experienced it? I called my RO's office a couple weeks agoand their initial reaction was that it had been so long since I finished rad that it probably wasn't related. That response pissed me off so much that I've been reluctant to call back bc I'm so sick of being told I'm wrong about my own body. If I had an idea of what might be happening or what might help, then maybe I could suggest something to them and they might be more willing to hear it. Anyone? Thank you so much for your advice.
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That's odd about your RO's office. My RO believes that radiation can cause long-term damage. That's why he advised me to seriously take care of my skin during sunny weather, using sunscreen and wearing sun-blocking shirts at the pool, among other things. You might want to check with a dermatologist about getting something to stop the itch since your RO seems unhelpful. Good luck!
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Anna - It could be nerves regenerating causing weird sensations. That's what I'd put my money on. Hopefully it just goes away eventually. I had weird itching every now and again for a long time after mastectomy and rads (honestly not sure which was the cause) but all's good now.
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I didn’t think I’d be back here on this site after having a previous full response to chemo. That what when I started chemo in Feb 2017. Here it is 2021. Now I’m 37. Today I had my ultrasound done showing I have 2 masses. One is 1.5cm and the other is about 1/2 the size. The radiologist said we need to go a biopsy and said my BIRADS was 4.
This all started rolling so quickly last week. On Tuesday I met my oncologist virtually, Wednesday had blood work done and they always check my tumor markers that are now teetering on the top high side. So by Thursday I was pulled in for a physical exam where my oncologist found a lump on my left side not even my right side where my cancer originally started. Friday they did a brain mri which was clear. Today they did the ultrasound that wasn’t clear.
A boulder is rolling over me, I can’t move up, I’m going down a mountain I just fought so hard to climb!! How is this happening again! I hate cancer so much! I just hate it!!!!
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I am so sorry beautifullybroken. That sounds terrifying. Hopefully it is just a scare though. Maybe it is not cancer. The tumour markers are still in normal range, just the higher end? Did you have genetic testing?
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I'm so sorry to hear you may have a recurrence.
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