mets to lung
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SlowDeepBreaths....glad to have you join our discussion board! Wish it was for another reason....but glad you are here! I am also TN with lung mets and 1 to the sternum. I have another scan next week to see what is going on...hoping for stable but will be really happy with regression.
Julie
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Hi ladies,
I've been following daily but haven't had much to add till now.
So Mary is in her third week of chemo. It's capecitabine, 3x a day for two months, two weeks on, one week off. She's doing ok, side effects yes but not too intolerable. Nausea, anxiety, extremes fatigue, etc.
but today she had heavy chest and trouble breathing. So she called her dr. Dr tells her she needs to go in to hospital for tests and prep for hospice!! That the chest pains mean cancer is all over her body. So Mary asks about the chemo, and dr says well that was just to slow it down, if it works. If it works it gives her 14 months. But now it's too late for chemo so you're looking at three months. And she insists that she's told Mary all this before but Mary is certain she's never talked time frames with her. Never. Even her husband is livid because it hasn't been discussed. Then dr says well isn't your breast oozing fluids? Mary says NO it's not! I'm just having trouble breathing! Mary has allergies too so she thinks it's allergies due to the high winds we've been having.
So she's calling for another doctor tomorrow because they're very unhappy with this one. She was callous over the phone and tells her all this info without even looking at current tests??
I don't know who to believe really....the doctor might have talked to her about time frames before and Mary just couldn't hear it, or maybe she's confusing her case with another...I don't know. Mary is usually very good about medical things but she's admitted to me before that during these dr appointments, it's all a blur, like an out of body experience. Her husband takes notes so they can discuss it all at home. But he says dr never has talked about this before.
I saw her on Sunday and she looks amazingly well. Tired but good color, cheery and fine.
Has anyone heard of capecitabine?
Thanks,
Laura0 -
Hi Laura.
I was on capecitabine for about 10 months. It worked well for me keeping things stable.
After 10 months it stopped working so now on taxol.
That oncologist sounds awful and I would get a second opinion if I were Mary. Time frames should not be given because everyone is different and the drugs work differently for everyone too.
Yes, stage IV or mets generally means treatment for the rest of your life, not many are cured (v small %). But there are many treatments and when one stops another is offered.
It sounds like the dr may have even been mixing her up with someone else!
I hope she can see someone else & get back on track.
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Blessed...your friend definitely needs to find another ONC! Or at least get a second opinion. I switched ONC after my first one told me I had 10 months to 2 years. Well.....I am having my 1 year cancerversary this Sunday and still functioning the same as I did 1 year ago! No increase in mets and everything stable. I am on my second line of chemo but when this one stops working there are others! I also have lung mets and usually on my 2nd week after chemo I feel heavy in my chest. I take a Claritin D and that seems to help. Sometimes the shortness of breath can be from the chemo.
Prayers for your friend!
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Ladies, thank you so much for your input! I looked up pleural effusions and it sounds like this is what's happening. I've sent her an article about it.
I'm stunned that a dr would treat a patient this way and give her such drastic news in such a fashion. I agree...it seems like she mixed up patients. Either way, my friend is seeking another ONC today. If anyone lives in the So Cal area and can recommend someone, please let me know.
Txrose, congratulations on your cancerversary!! How awesome!!! All of you ladies are so courageous in this fight, doing and taking all you can. God bless you all and you're in thoughts and prayers daily.0 -
Omg! I am stunned. Mary needs a new onc asap. I can't even imagine!!
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Texasrose53- Sorry, yes by chest expander I mean a saline implant. Small as it was my chest has felt tight that side ever since -10 years now
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Texasrose, Thank you for the welcome! Sending good thoughts your way on scan day.
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Dear Blessedwith6,
I hope your friend Mary was able to have her chest and breathing problems evaluated by a doctor (might be a blood clot or pneumonia or pleural effusion) and that she can find another oncologist who offers more hope. Or at least someone who offers her a reasonable explanation for the hospice referral.
btw, she may benefit from palliative care - a whole person symptom and side effect approach that can work really well to keep us going, because fighting cancer with chemo isn't the only thing that helps us feel better.
I started seeing a palliative care physician 5 years ago and it made my transfer to hospice so much easier!
Holding Mary and you in healing light, Stephanie
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Quick update...
Mary was still experiencing heavy chest and breathing problems so she went in to the ER and ran tests and confirmed it was her allergies. Weve been having alot of winds lately and she suspected thats what it was but glad to have it confirmed. They gave her a refill on her inhaler.
She is still looking into a new ONC.
Other than feeling tired and the breathing issues, she is doing ok!
Personally, i think that terrible dr needs to be reported. Id be writing letters like theres not tomorrow...0 -
blessedwith6, I am so sorry that Mary and her loved ones had to go through that!! I am so glad that is was cleared up but what a horrible experience with that Doc. Glad that she is changing doctors
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with the heaviest of hearts I'm here to tell you Mary has stopped her chemo. She told me today. She says it's not working,miss making her digestive system fail, and the dr told her she has three months to live so why try? It's up to God now 100% and she's ok with that. I started to tell her no no and no ,and how she can't listen to that moron of a doctor and there's more therapies and where's that fighting spirit! Where's that get up and go attitude?? And she said no, the dr told her what she needed to hear, and that I should do the research on how much corruption there is in cancer cures. Lastly she needs my love and support. I don't know what to say, I can't. I cannot stand by and do this.
She says she has her family's support. I don't know. Her son is my daughters boyfriend and I don't think he'd be in agreement. But my daughter says I need to be there for her. How can she give up after two weeks of feeling yucky?
I think she's holding back some info from me. The truth. Maybe the three months was THE truth. Maybe it is. I don't know. All I know is that it's so unlike what I personally would do. I just watched Creed last night and I'm in a fighting mode.
I wish she was too.0 -
Ok, Mary has decided to seek a second opinion. She got a recommendation from a friend and she's made an appointment for Monday. It sounds very promising. There will be a team of five physicians reviewing her case and they will give her a diagnosis and options by the end of the day. It's a UCLA physician who comes highly recommended. She's excited.0
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I'm so glad she changed her mind!
I hope the appointment goes well on Monday & she gets some encouraging news & hope!
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oh, thank goodness. I was really upset at the last Doctor. Thankful she is getting another opinion
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We looked up reviews for that awful doctor and saw she had terrible ratings. They complained of her misplacing records, condescending attitude, dismissing of patient complaining of pains, and not keeping accurate records for clinical trials! When Mary had asked her if she could be given a tx based on her height and weight, the dr replied oh no, we don't do that here. Everyone gets the same kind.0
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Awesome that she changed her mind! It is everyone's decision on what treatment action to take and when to stop treatment....but it is so hard for me when I hear of someone that has decided not to proceed with treatment especially when they have other options. I know there will come a day when my body says it cannot go on any longer....but until then....I plan on fighting with all my strength and using any available treatments to live life to its fullest!
Praying for your BFF!!0 -
Blessedwith - I am treated a UCLA by the head of hematology who is one of the oncs that spearheaded Ibrance studies. I hope she can see Dr. John Glasby or Dr. Dennis Slamon - she won't regret it. I bolted from my former Drs at Cedars in 2013, and have never looked back. Sending warm thoughts your way!
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Soglad she changed her mind and is getting another opinion!
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Yes I'm so happy too! Lalady, I gave her the names of those doctors and she wrote them down. Let's see who she ends up getting but just the change in hospitals should be a big difference.
Today she told me her leg has been hurting, and actually she's been aching all over for a long time. It's a sharp tearing pain similar to the ones in her breast. She says it's probably the cancer spreading. She says she's always in pain somewhere. What do you ladies think? Is she right?0 -
Blessedwith - she needs a PET scan to determine if cancer has spread to bones, etc. Let's hope her new UCLA oncs get her best treatment available. I am so happy she is getting second opinion. Sending hugs to both of you. For what it's worth my combo of Ibrance #125 + faslodex= clear lungs on my April PET scan.
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LaLady, that's terrific news! I'm so thrilled for you! Awesome awesome.
Ok, I know she had a PET scan before which confirmed the lung cancer but I'm hoping they run a new set of tests.
I don't know if with TNC she can take Ibrance or not. We are all anxious for Monday to come.0 -
Lalady, happy dance time! Awesome news
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I am wondering if anyone has been told to stay away from massages? My onc said some small research said it may not be a good idea. I am assuming she meant specifically for mets to lungs
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Lalady...Awesome News!
I had a PET scan today and get results on Friday! Hope I have the same news to share.....would really be just as happy with a report that I am stable
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Lalady, That's is great news!!
Texasrose, In your pocket on Friday!!
Blessedwith6, I'll be keeping you in my thoughts on Monday.
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Last week I was diagnosed with a 3 cm mass in the upper lobe of my left lung. I was first diagnosed with TNBC 7 years ago. PET scan results show activity only in the mass, nowhere else. My thoracic surgeon wants to remove that lobe of the lung. Has anyone else had this procedure done? How painful, debilitating is it? How long were you out of work? Thanks for your help!
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Texasrose - rooting for you! Do we have more ladies on Ibrance here? It's a powerful combo against lung mets - along with faslodex. Hi Singlemom - I was told to avoid body massage at stage IV to avoid potentially circulating cancer cells. But I think mani/pedis are great.
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Minxie, back in 1989 I had the lower lobe of my right lung surgically removed. I have to say it was painful and my recovery was slow. I was in the hospital for 10 days. Now, this was a long time ago and I'm sure there have been lots of improvements both in surgical procedures and pain meds. I had been diagnosed with breast ca in 1987 and had right mastectomy, The cancer in my lung was NOT breast cancer but a separate lung cancer. I have not had a recurrence of the lung cancer. Wish I could say that about the breast cancer! I would, of course, have surgery again in a heart beat, considering I'm still here. If you are uneasy about having the surgery, I would highly recommend a second opinion. A little peace of mind is a good thing. Wishing you well! Glenn
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minxie, On April 14th, I had video-assisted thoracoscopic surgery (VATS). They did an upper wedge resection to remove two nodules. We originally thought there was one nodule, but it turned out I had another small nodule on the original nodule. The surgery was quite amazing because they made three small incisions and one bigger incision. The surgery was done by video so it's less intrusive. There are many videos on YouTube that show the whole procedure.
I was home the next day but I do think I left the hospital too soon. I think another day would have helped considerably. I also tried to recover with minimal pain meds, so I was in a lot of pain that first week. Leading into the second week, I was doing much better.
Tomorrow it will be three weeks since the surgery and I'm feeling pretty good. I've started walking and doing my normal routine while not lifting anything heavy. Yesterday, I felt good enough to clean out my fridge and pantry!! I have a chronic cough, but I'm told that is normal and will eventually go away. I also developed cellulitis and I'm on an oral dose of antibiotics. I have a history of infections after surgery.
I know everyone's experience is different, but I'm glad I went through with the surgery. I almost backed out at the last moment.
Feel free to PM me if you have any questions. I'm more than happy to help in any way I can.
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