Bone Mets Thread
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everyone,
My onc told me she has patient on my treatment plan that is 13 years.
I so hope and I wish long timers outliners would post more
Always wondering if there is more I can do.
Considering plant based diet??
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positive2strong and Sunnidays wow those are both wonderful people to know of definitely inspiring gives some hope to all
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Hi all, after five years on oral meds for bone mets, I am being switched to IV chemo. I've done my first cycle of abraxane, 3 weeks on and 1 week off and just started my second (so have had four infusions). The chemo nurses are suggesting that I get a port. I am really nervous about the port because I don't like the idea of having something foreign in my body with direct access to my blood stream plus I am a stomach sleeper and worry it will make it hard to sleep. Has anyone been able to do weekly chemo without a port? The nurses say it will be so much easier for me since I won't need to be continually jabbed, but I don't actually mind the jabs. If the chemo is damaging my vein that is a different story. Conversely, has anyone been able to have the port placed in their arm? I think I would prefer that but since blood pressure can't be taken on the side with the arm port, I guess that makes me ineligible as one arm has lymphedema risk and can't get jabs or blood pressure as is? Any insight would be much appreciated!! I tried looking for a thread on ports but my "search" skills aren't the greatest. Thank you!!
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Fight4two, I’ve had my port for 5 years and love it. It felt a little weird when bending over for the 1st week or so but I barely notice and only hurts or is uncomfortable when it hit it directly by accident. IV chemo is doable without one but it will really take a toll on your veins and I honestly couldn’t imagine trying it that way, I’d be begging for a port. Good luck with whatever you decide.
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I never had trouble sleeping on my side with a port. After awhile you basically forget it's even there, unless something bumps into it.
I've heard of people getting ports in their arms before. Not sure that would be preferable or not? But either way, weekly chemo via a port is probably better than using the same veins over and over.
I have mild lymphedema in one arm and I still use it for blood draws and blood pressure. It doesn't bother it at all. On days when I need a blood draw and an infusion, I have the lab use my lymphedema arm for the draw and the infusion center uses the other arm for the infusion.0 -
Fight4two- I guess you had your first chemo without a port and so did I, which worked out, but, It did damage some veins with phlebitis, so they are not available for anything, and my right arm large vein has a lot of scarring so I try to save it for blood draws since I go for lab twice a month. If the phlebotomist is talented I have them use a smaller vein that I still have in my other arm.
It is stressful for PETs, some of the techs have trouble, the infusion nurses are very talented and they can access my hands etc. I will be switching to IV chemo also in about 6 weeks and I don't have a port. I worry about the same things you do, but, I don't think that I can use these veins for chemo again- I hear that the ports are much smaller and easier to access and more comfortable than in the past- I haven't talked to my MO about it yet. I will say that when I had the Zometa still it was a bit nerve wracking hoping that the IV access would be easy and it often was.
Most people say that they LOVE their ports-
I did hear of one person putting it in her upper arm, but, I don't remember who it was or what the details were.
Good luck
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Fight4two - I had a port for early stage chemo and when it comes time for IV chemo again I will definitely get one again. I was slender so it stuck out a bit but I only noticed it if I was wearing a bathing suit. Once it healed, I don’t really remember it being uncomfortable.
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Fight4two, I got my port when I had to start IV chemo last October. I really appreciated getting it as the chemo I was on, Vinorelbine, is strong vesicant which will cause burning if it gets on the skin. Now I am on a different treatment but it is so great only having to access the port.
You will need to consider the pros and cons. While you may not be having trouble now, you are likely to have more trouble the further down the chemo path you go. Chemo is notoriously hard on your veins and the problem with regular access is that you are going into a small vessel which increases the chance that it will damage the vein. Ports (and PICC lines) have entries in large blood vessels which makes it unlikely that the chemo will do any damage.
In terms of discomfort from the port, it depends a lot on your anatomy. In my case I am thin and there was no natural pocket for the port to sit in. As a result, my port sits quite proud on my chest. It doesn’t bother me in terms of noticeability but it is occasionally a bit tender (the skin is thin over it) - nothing significant. I thought it was just my thinness but one of the chemo nurses recently commented that it’s not the case for everyone - some slight people have ports that can barely be seen. Go figure…
I have not known anyone who had a port in their arm but I had a PICC line when I was treated in 2001. It went in through my arm and emptied into a major artery. It was great as well but had some significant downsides. I had a tube coming out of my arm which was a potential source of infection (ports have no opening to promote infection except when the IV is inserted through a specialized access - still using sterile technique). Because of the tube, I could not bathe at all and could only shower, taking care to make sure it stayed dry. I can do anything with my port.
I hope this is helpful. I think you will love your port once you have it. There will be some adjustment but I think it’s worth it. Good luck
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I had infusions for about four years with no port. First six months was weekly taxol and every three weeks taxol, Herceptin and Perjeta. After that it was just the Herceptin and Perjeta.
Im kind of a “hard stick” but it worked out ok. I’m not sure why my MO didn’t send m for a port, she asked how are your veins, I said so so not too bad so she went ahead without scheduling me to have a port installed. I preferred it this way too, the fewer invasive things I have to have, the better imo.
Now I am on subcutaneous injections so no need for the port.
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Hi ladies,
Just wondering if anyone has had rectal bleeding? I suddenly had a massive bleed when I went to the toilet followed by a further two episodes of blood loss (it was like v liquid diarrhoea). My G.P. sent me to A&E and I have been in hospital for the past 12 days. I've had an x-ray, ct scan, an endoscopy and a colonoscopy. They could not see where the bleed was coming from. However my haemoglobin is low. It dropped from 8.9 to 8.2 and I was given a blood transfusion last Tuesday. The docs assumed it was a 'one off' as they couldn't see anything on the scans. I was due to go home on Friday but my haemoglobin dropped again, this time to 7.7. So I had another transfusion. They are now planning a second colonoscopy as the first wasn't completely clear.
However my onc. thinks my bone marrow cannot cope any more because of all the bone mets. and is unable to produce enough red blood cells. He wouldn't say any more until haematology check my bloodwork. He says he wants to rule out everything before making a definitive dx. I fear he's correct about the bone marrow and am very worried.
Has any one else had the same problem with their bone marrow and if so, how did your oncologist treat this?
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Aoibheann, Sorry, what a shock to have this after 10 years of successful endocrine treatment for MBC!! It will be interesting to see what is proposed; low-dose chemo was used in the past but now there are so many other options, maybe an ADC. Is the cancer lobular? Hopefully they do a bone marrow biopsy and get some genetic information about the cancer, figure out the best way to beat it back...
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Aobheann, I had bleeding after I started Verzenio and while I was on a blood thinner. The constant diarrhea led to hemorrhoids and the blood thinner just caused a.lot of bleeding. I'd stop the blood thinner and then it would get better. I did see a GI specialist and she confirmed, so we let the hemorrhoids heal and reduced the dose of the Verzenio. All of that helped.
I hope that this is something that can heal and resolve easily. I'm so sorry you're going through it.
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Hi Aoibheann,
I'm sorry you are dealing with this. It does sound like there is a bleed somewhere. What treatment are you currently on? Could that be the problem? I developed hemorrhoids from the adjuvant treatment I received in 2001. I had no idea at the time but the combination of the chemo (which hit rapidly dividing cells including the walls of my colon) and the anti-nausea meds (which caused constipation) led to thrombosed hemorrhoids - not fun I can tell you! I have rarely had problems but there have been times when they have flared due to various treatments. I believe it was when I was on Verzenio that I suddenly had a toilet bowl full of blood. Depending on where they hemorrhoids are, you may or may not have any pain.
I have not had issues with my marrow due to the bone mets per se. However, my marrow does tend to be very susceptible to toxicity from the treatments. I had to stop Ibrance as it was completely wiping out my red blood cells, taking the hemoglobin with it. Verzenio was better but still had an impact. And, while Xeloda was great in terms of beating back the liver mets, it was also very hard on my marrow. My RBCs and hemoglobin were doing a slow downward slide and there were several other blood measures that indicated toxicity to the marrow. As a result, my MO wouldn't let me stay on Xeloda unlike many women on this forum who are on it for years. Interestingly, once I stopped taking it my marrow recovered. I've been on Vinorelbine and now Eribulin, neither of which are impacting my marrow (unfortunately I also didn't respond to the Vinorelbine and the jury's out on the Eribulin... I have my doubts based on symptoms) and, in fact, my blood counts are better than they have been in years.
I hope they get to the bottom of the issue and that it is treatment rather than cancer related. Sending positive thoughts your way.
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Thank you to all who replied about my port fears. You’ve given me the courage to go forward with it. I realize BC has caused me to do many things I’d never choose to do. I plan tojust grit my teeth, trust in the professionals and be encouraged that the port has worked out positively for many of you. Please think good thoughts for me on Wednesday morning!
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In your pocket! As additional encouragement, the insertion was a piece of cake for me. I only needed local freezing (that was actually the most impactful part as the freezing being injected stung), no sedation. It was a bit sore for a day or two but no extra pain meds required. Everyone has a different experience of course but I’m sending wishes for smooth sailing!
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fight4two I will be thinking of you on Wednesday. I was nervous about getting my port but it wasn’t a bad experience. I was in and out of the OR quickly since I opted for local anesthesia. I sleep on my stomach without a problem. Since chemo was hard on my veins, I’m grateful for my port. I was on the same Abraxane schedule in 2019, It was easier on my body than my first chemo regime, so I hope you do well, too. The time commitment was an annoyance but I had fewer bad side effects
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Fight4two- good luck! Let us know how it goes!
Aoinhearn- I did get a hemolytic anemia a few years ago and struggled with blood counts for two months. No bleeding issues, but the cancer rapidly progressed in my bone marrow and destroyed cells until the new treatment kicked in. You should have lots more info after the hematologist gets the lab work back.
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Aoibheann, I wish you luck in figuring out the rectal bleed. Worrisome indeed.
Fight4two, I haven't had a port yet and would be apprehensive as well. The ladies here have reassured me everything will be fine if and when it's my turn.
Positive2strong, I wonder too what I can do.. my Oncologist is big on vitamin D, melatonin and tumeric always adding 'but I'm not a naturopath'. Also exercise, exercise, exercise!!! He cracks me up. He's also big on meditation, massage and accupuncture. One could make a hobby of this.
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I briefly interrupt this discussion on bone mets to say I’m finding the new layout of the forum to be a bit disorienting. Everything on my iPad is all one color so its hard to tell what’s new that I haven’t read. I’m sure much effort went in to the new look so I hope I can adjust. It may take me awhile.
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YESSSSS! There is a learning curve for sure!
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How do you log out??
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I couldn't find it either but it may be easier to NOT log out. When I stayed logged in, I could find this thread quicker to post a response. 🤷
Signed,
Still Learning
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Unfortunately, I think the new site is an epic fail. I am having a terrible time viewing. There is far too much white space which is hard on the eyes, the text is crammed together with no differentiation in fonts, etc. making it very hard to read. To be honest... I may have to bail on BCO as it's just horrible.
Edited to add: I am also finding it very hard to determine what I have read/what's new. In addition, I could always easily see the Stage IV threads as that showed as a section I visited. It made it much easier to sort through the multiple posts to see relevant threads. That's gone as well. Really challenging for users.
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I agree. I don't like the new site. It's difficult to navigate and it's hard to tell which posts are new in my "Favorites" section.
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I don't mean to be harsh but I come at this from the "older eyes" perspective.
In my work we are often focused on accessibility in terms of web based presentation of information. As a result, I'm sensitive to the readability of sites. 0 -
On the topic of website changes, I agree that the white background is a little bit of a harsh adjustment without the faint background color we were used to and I do miss the colored font, particularly for the user names and “post s comment” function. I knew changes were coming but didn’t think the community pages would be affected, however, this is not the final product for the community part of BCO, so please don’t be too discouraged or leave just yet. It’s a work in progress. Also, “new” is not obvious but it’s there and hopefully will be more prominent as modifications are made. I included a screenshot, just because it is so easy to not notice it.
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I too am not happy about the new site. It is hard to read. I am not leaving here, but I wish it stayed the same. Not a good change.
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A few issues I have: the pages load slowly. I have a brand new iPad Air less than one year old and updated to the newest ios version and have excellent broadband internet, so none of those are the problem. But the loading of the pages on the forum are slow.
I see no indication when I go to the stage iv only section which threads have new replies that I haven’t read yet. Previously, the word “new!” was in front in a color different from alllllll bllaacckkkk anddddd alllll whittteee. Yes, I’m frustrated as you can tell. And the print seems tiny. Maybe its the same size, but it all blends so its harder to read.
Also, I was logged off after my last visit here and it’s hard to find where to log on to when previously there I easily saw and clicked on the log on link.
My son is a successful software engineer who loves creating user friendly webpages that are visually appealing with color and fonts and simple to use. I’m going to be getting his opinion on what he thinks of this.
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And now your avatar has disappeared. Oh dear... It is painfully slow which is odd. I also had a terrible time trying to figure out how to log in. I finally managed to get there by closing the page completely and then reopening it.
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Ahhhhhhhhhhhh - loading a page is very painful (and in one case never loaded - got some funky error) and the font is crazy small. I sure hope this isn’t the final product. I think the font color in certain areas is actually grey. Very hard on my eyes
My signature has been broken for a long time. I’ve updated my treatments but my signature never updated. I thought this redesigned site may have fixed that. NOPE. Sigh.
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