mets to lung
Comments
-
Lalady, your treatment today sounds just awful. I hate all dental stuff! I'm so sorry you are dealing with this jaw met. I'm happy to hear the Ibrance is working on your lung mets though, hopefully it will for mine too. For some reason, I'm having a lot of anxiety lately and then I feel short of breath, which makes me more anxious, a vicious cycle. I see my MO next week so I'll talk to him but my brain tells me not to worry and usually taking a zanax will help but I just hate how this #%€¥ cancer steels so much from us.
Praying the rads will zap that stupid jaw met and it's not too awful to go through.
Hugs, Faith (in the future)
0 -
Faith:. do mention to your dr. about the shortness of breath with anxiety. That can be a symptom of a pericardial or pleural effusion, common in those of us with lung mets.
0 -
Barbe - love your barb, lol. Turns out I am allergic to taxol which was discovered out midway through my initial chemo for stage 3. I finished 6 rounds of chemo with a ton of steroids.
So when stage 4 started, I moved to Ibrance +fas which has really kept lung issues at bay and killed a lung met and stabilized bone issues in sternum, etc. But the jaw met jumped ship, so I need this frightful Freddy Kruger style mask on for a few weeks during rads. ugh I am asking my sister and others to help me drive, noting I drove alone each time except once to "regular" rads. This is a lot different. Please everyone take note of Zometa and Xgeva side effects to the jaw. Many lawsuits per my cancer dentist. Meanwhile, my lung is doing well. Faith - I take a xanax as needed, don't worry about that or ativan which are here to help us. You are a sweet lady so please check for pleural effusion too. I'm off for Germany on Wednesday! Cheers!0 -
Lalady, I have been taking the zanax more now and find it does help. Have a wonderfu trip to Germany and feel well. You are so courageous to take these trips, more power to you. You are my hero. I hope you will come back with lots of pictures to share. I'd really like to plan a trip to Italy but then I have days where I'm short of breath and it makes me anxious to think about that happening while away from home. I just need to get my anxiety under control and then we will plan for it. I even have my MO's ok to go. Just need to get up my nerve.
Cive, thanks I will indeed mention the SOB with anxiety to my MO next week when I see him.
Hugs, Faith (in the future)
0 -
I had my first dose of Doxil today. It was slow and easy and I slept the rest of the day. I chalk that up to not being able to sleep the night before. I was up with nerves and pain.
My MOs office started something new since my last treatment. I filled out a goals of treatment page where I listed what I wanted to accomplish. It felt good writing it down. One thing I said was that I needed to remind myself every day that the Doxil is working. It feels a bit scary going 28 days between infusions, but that doesn't mean that it's not working all month. Must keep remembering that...
I pray everyone has a wonderful week with little pain and much strength and hope.
0 -
Noni
I'm so pleased to hear that it went well. I've been thinking of you. Great idea to write the goals down.
It feels like you're on the right path for good results.
Be proud of yourself too for how you've handled these last few weeks which have not been easy.
Well done you. Rest easy x
0 -
Very proud of you Noni - writing down goals or journaling our meds/daily events helps center and ground us. It's a very anxious time, but we are rooting for you. Imagine every day Doxil killing off cancer cells wherever they lurk. It's a hired assassin.
0 -
So glad it went well for you Noni. You got this. Writing down your goals sound empowering. Please keep us updated.
0 -
Doxil kicked my butt this week. I've never felt so miserable. I was in the ER today with more breathing problems. The fluid levels are about the same as a week ago but they gave me the option to be admitted so they could stabilize me or send me home. I opted to leave. I hate the ER.
I haven't been taking care of myself this week. My bedroom is on the 2nd floor and stairs are much too difficult for me. So I decided to set up camp on the 1st floor, closer to the bathroom, food, and fresh water. It also encourages me to move around more often and will allow my DH to sleep at night. He's still working full time and it's exhausting when he gets up with me ever hour.
Wish me luck that this allows for a speedy recovery and healthier living.
0 -
Noni, feel better soon. You are in my thoughts and prayers.
0 -
Noni, Sorry to hear what a rough time you are having on Doxil. I hate the ER too. Last time I went I ended up just going back home because I got tired of waiting for hours.
Have any of you taken the Pneumonia vaccine? I decided to take it because of the lung mets. Figured getting Pneumonia would be a nightmare. I had to pay for it out of pocket, about $200, but will see if my MO can give the insurance company justification for it.
Hugs, Susan
0 -
One other thing, I had been using an electric heating pad under my upper back because I thought it helped the tightness in my upper back and I also thought it might help my lungs. My massage therapist told me that electric heating pads generate a lot of electromagnetic waves. I did some research on it and, although there is no definitive research linking cancer with EMF, it just makes sense that there would be one since EMFs can damage your DNA. I remember wondering about it when I bought the pad but I thought, they wouldn't sell it if it was dangerous. The recent progression I had was at the back of my lung near my spine so I wonder if there is some connection. I mean, they warn people about sleeping too close to an alarm clock and here I was sleeping on this pad for 2-4 hours a night!
Just wanted everyone to know. Hope no one else is using one
Hugs, Susan
0 -
Susan, I got a pneumonia vaccine for the same reason. Although my insurance company at first told me that I'd have to pay for it and they would reimburse me, my doctor gave it to me and dealt with the insurance through her office and I didn't have to prepay. If you are on medicare, it is covered as preventative and I believe the ACA also covers preventative vaccines.
0 -
Susan, I also took the vaccine. My insurance covered it. My husband has Visiting Nurse to his business every year for flu injections...etc. I also have a diagnosis of asthma so maybe that helped to ease the coverage.
The Dr. I worked for recommended that I take it, didn't even talk to my onco. I had already had the previous pneumonia vaccine
0 -
my onc did not want me to get the pneumonia vaccination but did want me to have the flu vaccination.
0 -
Thanks everyone for the feedback on the pneumonia vaccine
0 -
Hi ladies. I had my second Doxil infusion last week. I have more energy and truly believe that it's working on shrinking my lung tumors because I have been breathing better.
I've also been eating better, which is a mixed blessing. I indulged in too much holiday ham and the sodium caused quite a bit of fluid back up, including around my lungs. I doubled up on my water pills and water intake for a couple of days and it made quite a difference. I never thought how that could play a part.
My biggest concern at the moment is what was a minor rash on my legs last month and has turned into something quite more serious. I've been put on steroids and Claritin daily. The rash is now all over my body except my hands and feet. It's red, itchy, and gets oozy. Hate it with a passion as it makes sleeping nearly impossible. But I have to keep reminding myself that my breathing is better. In my book that's more important.
My next infusion is February 1st and I'm hopeful things will be much improved by then. I'll have a scan the first of March.
How is everyone else doing?
0 -
Hey Noni
Great news about the Doxil (despite crap skin rash - hope that sorts quickly). You sound really good and thank God you're breathing better.
I've started on letrozole (4 weeks in). So far going ok.
Hope everyone else is doing well
0 -
One week on steroids and my oozy rash is no more. I've still got a rash, but it's a lovely shade of brown rather than the bright and shiny red. The itch is gone too. Not sure how long to continue on the steroids. I'll be calling my MO this week to check in.
Another positive is in my breathing. I woke up this morning to find that my oxygen had fallen off overnight. I woke up breathing fine, with my oximeter showing a number of 94. Not bad! I decided to stay off oxygen all day, just to see what would happen. Very happy to say that I never dipped below 91 and I was fairly active. I even made it up and down the stairs a dozen times.
I had people caution me that Doxil was a hard drug and doesn't always work, but I have faith.
0 -
Fab news Noni! Sounds like Doxil is working for you. FYI I haven't needed a lung drain in over a month, so hoping the Ibrance is doing it's thing.
(()) Claire
0 -
Noni, great news on the Doxil. Claire, also good news on no lung drain for over a month.
Praying these drugs keep working for all of us.
Hugs, Faith (in the future
0 -
Glad to hear you are doing better, Noni and Faith. Me too. The lowest my O2 has been since the removal of both Pleurx catheters is 96, even after climbing the stairs. Gives you a real appreciation for breathing.
0 -
Hi Cive,
I can echo your comment about a new appreciation for breathing. I don't see the oncologist until Friday so still don't know the status of my MPE or where else I have cancer potentially but I am struggling to cope with the shortness of breath. I have a 4 1/2 year old collie (Sadie) who needs her exercise but it's getting pretty challenging.
I had also forgotten about the feeling of having all those tests when cancer is staring you in the face. As I mentioned in another post, I'm almost 16 years out from my original diagnosis of stage 2a. I had a bone scan last Friday and the radiologist decided I needed a pelvic x-ray too. Sigh.... CT scan and blood sometime next week and then hopefully a game plan. The wait is sooo stressful!
Glad there is a place where I can vent a bit.
0 -
Sadieservent: Has your doctor considered putting you on oxygen until you get a treatment plan worked out? I was on oxygen for several months while they first got the appropriate diagnosis and then got my catheters in. It's a pain dragging around O2 but better than being really short of breath. And yes, I have a very sweet cocker spaniel that insists on being walked several times a day.
0 -
Hi Gah,
I am sure there are others that can comment on how quickly the pleural effusion progresses but can say that mine was pretty quick. I picked up a bug flying on a work related trip (typical cold symptoms) in late October. When I couldn't shake the cough I went to my GP after 3 1/2 weeks. He ordered a chest x-ray that showed some fluid accumulation in my right lung (same side as my original BC). Next was a CT scan on December 23rd which showed swollen glands in the chest and a LOT of fluid. Explained the stupid cough!
A thoracentesis drained about half the fluid (1.5 litres) and the biopsy showed malignant pleural effusion. The rest is history so to speak.
I did not have much pain until mid-December but attributed it to all the coughing. I was definitely getting short of breath. I had some relief (about 4 days) after the thoracentesis but the fluid has been building since then. Now I am really struggling with the SOB and have quit a bit of discomfort. I think a big part of it is gas pain as my digestive system is not working as it should. I'm trying to eat though as I have lost about 5 lbs in the last month or so.
I can't wait to see my oncologist on Friday. I'm anxious to start moving forward with treatment as, thanks to the ladies here, I am sure there are many years ahead and I plan to enjoy them!
Hope you get some answers soon.
0 -
Hopefully someone on your team will refer you to a pulmonologist. They are the folks that do lungs. I had the same problem until I got my catheter in, they filled back up after they emptied them. Like you I had 1.5 liters in one lung and I also had 0.5 liters in the opposite lung. It was actually the lung opposite my original BC that had the most. Hope you get relief soon.
0 -
Hi Sadies - sorry you have to join us, but there is a lot of support here. Will you be starting Ibrance +faslodex or something else? Curious what your onc is thinking.
(()) Claire
0 -
Hi Claire,
I don't know yet. Still two more days to go and the wait is awful. I'm trying not to panic but it's hard not to imagine the cancer running rampant. After my bone scan there was a quiet conversation between the technician and the radiologist who decided I needed a pelvic x-ray. Now my blood work came back with a worrying trend - GGT was already elevated at the end of November (80) and now it's up to 210! I'm starting to imagine cancer everywhere.
I'm in Canada so they often use slightly different protocols. I'll know better on Friday but am trying to work out options with pretty limited information. Wondering if hormone therapy is in the cards given that I have already completed 5 years of Tamoxifen and 3 years of Femara. Stay tuned...
Deep breaths would be a good idea, if only I could breathe! LO
0 -
Sadie - if you are ER+/PR+ and HER-; I'd talk seriously about Ibrance +faslodex or Ibrance +letrozole as your next choice. This protocal can work if tamox/femara have failed. Hang in there with scanxiety.
(()) Claire
0 -
Thanks Claire,
I really appreciate the advice. But at the risk of sounding a bit dumb, can they tell the characteristics of the cells from the pleural fluid and would they normally do this typing? I don't have a copy of that pathology report yet and the only info I had from the first diagnosis was ER+. I am trying to figure out how we can find out the rest given that there may not be an obvious tumour. My only experience was with a core biopsy - bit different when it's internal.
CT scan now out of the way. I was surprised they did not scan my brain but at least did everything else from the neck down. Results tomorrow. Hooray!
0
