mets to lung
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Just got my scan results back this afternoon and unfortunately, the PET/CT scan showed some progression in my lungs. I had my largest lung tumor radiated back in June and was hoping it would be shrinking but instead the SUV is higher and it hasn't shrunk. The report also says one of my smaller tumors is .4 cm larger and there is a new active tumor. Haven't spoken to my MO yet. Guess I will have to switch treatments. On Xeloda now. Next treatment is Palbo.
Hugs, Susan
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HI Susan, Have you spoke to your radiologist about your scan? I had proton therapy to my chest and some of the radiation hit my lungs. There was a lot of inflammation in my lungs due to the radiation and the suv levels were increased. It took about 6 months for my scan to show good results. He also told me they usually recommend not to get a scan for 6 months due to this. So discuss this with your MO and radiologist.
Hugs,
Robin
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Thanks Robin! That what I'm hoping is true for the area that was radiated. Not sure if this applies to the new tumor. Haven't spoken to my RO or my MO yet. Have an appointment with my MO next Thursday. Will try to get in touch with my RO next week. Since each scan is read by a different Radiologist, it's hard to accurately compare scans. I've had the situation before where a radiologist said there was a new tumor but when my RO looked at the previous scans, it was always there. I've been complaining about this lack of consistency in the past. I have relationships with my MO, my RO for my brain, my RO for my lungs, my Ocular Onc, my BC OB/Gyn. Why not a Radiologist? It doesn't make sense.
Hugs, Susan
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Susan, I too had the problem with inconsistent radiology reports. The reports were not very detailed at all and contradicted things from one report to the next. It was so frustrating and I couldn't deal with anymore. I started going to a new facility and the reports are thorough and consistent. It has never made sense to me to have multiple readers. Have you been on Xeloda for 2 years? How bad are side effects? I think this will be my next treatment when I fail faslodex & Ibrance.
Robin
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I was diagnosed Her2+++ while breastfeeding at age 43. (Too old to be having babies). A double mastectomy - my ex chose the size which I live with and hate (too big). I declined to do any further treatment. A year later mets to lungs and bones. My lungs and bones starting healing after only 2 treatments. I thought that was how it was supposed to be. I have spent the last 8 years doing various treatments. In August I had to do Whole Brain Radiation for around 40 tiny brain mets. My latest scan shows it worked. Enter my lungs, they are a mess. Both lungs have diffuse tumors, my right lung is partially collapsed, and I did 4 - 5 thoracentesis procedures this last year. As the fluid builds , so my heart rate increases, and it gets harder and harder to walk upstairs or move around. My last EKG was abnormal, so I see a cardiologist this week.
The upper side of my right lung is puckered by a tumor.
I am seriously considering putting in a catheter, so any suggestions or advice on that would be wonderful. Has anyone had a collapsed lung over a period of months, which they healed from?
I did a test that showed that my type of cancer would respond to Ibrance (Palbociclib) - but I am ER-
I am doing a lung biopsy on Tuesday, so hopefully, we will be able to confirm the hormonal status of this cancer.
Sia - the singer, has a song called Alive - and yes she shouts - but she shouts - I am Alive, I am still breathing.
Here's sending out the intention to all you wonderful ladies, that we'll all be breathing a long time into the future!!!
Best wishes
Fern
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waterlady - I recently had the 2nd of two catheters into the pleural space removed. While part of one lung was collapsed at initial diagnosis of mets, I don't know how long it had been that way. It just really hurt when it came un-collapsed during thoracentesis. It took approximately one year for spontaneous pleuordesis to occur in both lungs, they put the left one in when they took the right one out. My lung capacity is pretty good, at least I can talk and walk briskly at the same time. I also had the rapid heart rate problem, partially due to afib and partially to trying to get my O2 to a reasonable level with the restricted lung capacity. I'd rate my quality of life vastly improved.
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Hi Waterlady - I still get a monthly thoracentisis of the left lung - bottom area of left lung collapses each month and generates about 700 cc of fluid (coughing and some pain when it fills back up with air). IR Dr says he's seen too many patients experience lifelong pain after pleuradesis, so here I am. I get a little short of breath on stairs, but I walk briskly around town and even at the mall. I am working full time, so that is proof we can keep up with much of our new normal. Susan - I have been on palbo (Ibrance +faslodex) for 11 cycles, cleared up my sternum very well. Hoping you get great results. (())
Claire
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Thank you so much for taking the time to reply to my post. You have both given a lot of encouragement, when things seem pretty tough.
Sending you both thanks and warm wishes,
Fern
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Hi Fern - I read your profile and nnoticed you have been through a lot, including tough brain mets. I'm in my 50's dealing with stage 4 for only 1 year, but started on Ibrance+faslodex as my BC is EP/PR+ and HER-, so wondering what test indicated you would respond well to palbo (Ibrance)? Are you aware that sometimes HER changes after BC? Maybe yours has? Please speak with your onc about it or possibly faslodex. We are here for you! I go to UCLA - where are you being treated?
(()) Claire
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Looks like it is a real progression in my lungs. My RO and I went through all of the scans and compared them to the previous scans. There's a new tumor in my lung close to my spine. It's only 1 cm so not effecting my breathing. Also, the radiated section of my lung is a bit more active. It's been 4 months since the radiation treatments so I'm hoping it is just taking awhile. This is the first progression I've had since my original mets diagnosis more than 2.5 years ago. So they took me off of Xeloda and put me on Ibrance plus Faslodex. So far, no SEs but it's only been a few days. Hope it works!
waterlady, looks like we are in the same exclusive club, brain and lung mets. I also had bone and eye mets but haven't yet seen anyone else with all four.
Saw a great documentary today called "The Connection: Mind Your Body". You can watch it free here: https://theconnection.tv/.
Hugs, Susan
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Hi Susan,
Faslodex/Ibrance wiped out my lung mets in 3 months!! Last scan was last week and still no activity in the lungs, but new lesion in liver. So I am off this combo and moving on to Xeloda. I found the Fas/Ibrance combo to be easy, but unfortunately I lost a ton of hair and my hair is very thing and damaged. Most women only have mild shedding and some women don't even have shedding. Boy I was very unlucky in that regard! I only lasted 8 months on this combo and was hoping for so much more because I found it so easy. I wish you the best with your new treatment. How were your side effects on Xeloda?
Robin
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Robin,
Sorry to hear about your hair and your progression in the liver. I loved Xeloda. I was on it for 2 years. Not having to go to the infusion center for treatment is so convenient. Did a lot of traveling. I did have hand/foot syndrome but was able to keep it under control (Heel balm plus exfoliation on the feel. Hand cream every time I washed my hands. Tried to avoid harsh soaps). When it got really bad I took an extra week off. If possible, see if you can get on a 1 week on/1 week off schedule. That made all the difference in my SEs. Xeloda didn't seem to shrink my lung tumors much but everything else (eye, brain, bone, breast) seemed to respond very well.
Thanks for writing back to me and sharing your great lung met response to Fas/Ibrance.
Hugs, Susan
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Susan, so sorry to hear about your progression but I have read good results on the Ibrance/Faslodex combo. I'm on Ibrance/Letrozole and SE's are doable. The fatigue is the biggest thing and like Robin, my hair has taken a big hit. A lot has fallen out and while I still have enough to not need a wig, what I have is is very thin, it seems the strands themselves are actually thinner than they used to be. After going bald the first time on chemo, I hate this hair thing but I guess it's a small price to pay if it keeps me alive.
Robin, I'm also so sorry about your progession to the liver and the Jaw met I read about earlier. Here's praying that the new treatments work wonders for both of you. You are two women I've been following because of the lung mets which is what I have. The last scan in October seemed to show the mets were stable but it also showed an infection in the left lung in the same area of the original tumor. So, being the worrier that I am. I keep wondering if the infection is obscuring the view of the tumor. The last blood work showed a very slight rise in ca 27-29 marker. From normal 30-35 range to 40. I know it's probably nothing but I have never had elevated markers even in the beginning. I also have read many times the markers go up and down and we should just rely on scans. However, as you both know, everything causes anxiety in a cancer patient.
Well, prayers for all of all.
Hugs. Faith (in the future)
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Hi Faith, I actually have a liver tumor and a bone met. Claire has the jaw met. I know reading so much can be confusing as to what is what. I would not worry to much about the small rise. My marker rose from 41 to 60 and I knew what that meant.
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Robin, sorry for mixing up you and Claire and the mets. It does get confusing sometimes reading so many threads. You are both beautiful ladies and I'm so sorry you are dealing with these mets. I'm praying for all of us.
Faith (in the future)
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I need some advice please. After a bad scan last week I will be going back for chemo (Doxil) to battle new and increased lung tumors. Before that I will be having radiation on my spine for several compression fractures which are painful as heck.
My worry is breathing during my treatment. I was sent home on oxygen last week and found that I really am dependent on it. I had a very difficult time with a brain MRI last week because laying down made me feel like I was suffocating.
On Thursday I went in to my RO office for mapping / sim and was also unable to lay down. First the pain on my back was unbearable and then the sensation of not breathing freaked me out. I'm going back to try again on Monday was was instructed to double the pain meds and ativan. I pray that I can get it done.
Does anyone have any tricks for surviving both the mapping and the rads, when dealing with lung mets? I've spent the last year sleeping sitting up or on my side and it's only gotten increasingly worse. I'm thankful that my RO has agreed to zap a few of the lung tumors along with my spine but I'm so damn worried.
Help please?
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Thanks Faith! I hope you had a great Thanksgiving
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Noni, I am so sorry you are going through this. I don't have any tips but hopefully someone else will come around who does. Sending you positive thoughts.
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Noni, I really don't have any experience with this but I have heard others actually being sedated in order to have an MRI. It that a possibility? Good luck, I will pray there are some answers for you out there.
Faith (in the future
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Noni: What do the doctors say about not being able to breathe? Could they do a contrast CT scan leaving your head out so you could be on oxygen while they did it? Sounds like you may possibly have a pleural effusion. I know that's what caused my extreme shortness of breath.
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I was unable to do the mapping again yesterday. It was just too difficult to breathe while on my back. They had me on an incline but that didn't provide much relief.
My RO feels there is more fluid around my lungs. I had one drained a week and a half ago and he scheduled me to have them both done this week. The first will be Thurs and the other on Fri. Then he's going to try mapping / sim immediately after the second is drained, so hopefully it will be easier.
It's frustrating because I really need this radiation. The pain in my spine is dreadful. I need some relief.
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Gentle hugs sweetie.
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Hi Noni - you will feel better with both lungs drained and should be able to lie down for mapping easier. So sorry about bone pain to spine, but hoping rads can do its magic there soon. How much fluid was drained from your lung?
(()) Claire
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I decided to forgo the second shot at draining. My MO was anxious to start chemo, as I've been without treatment for far too long already.
I am starting Doxil on Monday. Crossing my fingers and hoping for the best.
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Noni - I had my left lung drained today, it was at an all time low of 400cc, so we are planning more time between drains.
However I start jaw rads on the 19th and get simulation tomorrow. What treatment were you taking before Doxil? Did onc consider Ibrance? Rooting for you on Monday and hoping you get some much needed pain relief!0 -
llalady why jaw rads? Necrosis?
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Lalady1, 400 is a better number. I hope you felt better after.
We had talked Ibrance in the past. To tell you the truth I am not sure why we/he opted for Doxil. It's a combo drug and I can't remember the other med. It all made perfect sense when we discussed it, but that was days ago and my mind gets mushy.
I have the paperwork in my bag, I should bring it out and read it. This is the part about it that I like the least. As a patient with a mere Dr. Google degree, it doesn't matter how much I know, I will never know more than the experts. It stinks that we have to make these decisions, but I know it's important that we do. In the end I have to trust my MO and thankfully I do.
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Ibrance and the Pfizer Co-pay one card. For those of us on the copay one card that expires on 12/31/16, I called to inquire what steps, if any, we need to do to get it for 2017. I was advised that at this time they have no information as to whether the copay discount will be available for 2017 as was told to call back closer to the end of the year, I.e., 12/16/16. If anyone else finds out anything differently please let me know asap.0
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Hi Barbe - I have a lone jaw met in addition to mets in my pleura/sternum. Today's sim was terrifying, imagine dental trays in your salivating mouth while a warm latex mold is placed over your face and throat and you cannot move for 10-15 minutes. My heart goes out to the brain mets ladies on whole brain radiation who suffer something like this. I asked him how many sessions - 10 or 15? (we had discussed 3 weeks) - he said 18. So I countered with no, I just have a jaw met, not ONJ, and this radiation won't eliminate my stage 4 cancer. So I am hopping off the table when I feel "done". Ibrance is working well on my lungs - 400cc is pretty good. Noni please keep us posted. Doxil can be tricky.
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Have they tried something else before rads? Feels kind of radical (pun intended) to get so much radiation!!! Chemo???
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