You mentioned a couple of posts down this page that you are starting Taxotere, Perjeta and Herceptin in a few days. Although I don't have lung mets I do have bone and liver mets and have recently finished the chemo side of this treatment. There is a thread on here called 'Pertuzamab' if you want to look at that for more info and experiences of other ladies who have had this combination. Sorry I can't help with any lung mets queries and I hope this treatment works well for you.
Again, sorry I can't help with your query Bev. As Porkie has ssaid maybe mention it to your team? Could it be something to do with the steroids as they're only given at the beginning of each cycle although you probably weren't having any whilst on Capecitabine.
Hi Bev I havent got lung mets although I do have some pleural fluid apparently. When I had docetaxol last year I had some episodes similar to you but this stopped when chemo stopped and I have not had any other adverse effects. I would mention it to my oncology team when you go if I were you unless you find it gets worse then perhaps worth a phone call. Hope you are feeling better today.xx
Does anyone with lung mets get this at all?
For the week following each chemo I've had since july ....Capecitabine, docetaxol and now with carboplatin. ...my breathing gets noisy for the week again..and...i wake up during the night to cough because I can feel something rising in my throat. I sit up to cough it out but most times it just slips back down (sorry!) But if i am successful in spitting it into a tissue its a small piece of brownish red sinew that comes up....only about half an inch to an inch of it but it worries me, as it only happens the week after ive had chemo.
By the end of the first week the breathing gets back to normal and the coughing stops at night.
Hope you can help .....bev xxxxxxx
On my tablet. Clicked your icon alongside here but cant get to see profile page then. Just list of your tags a nd threads. Will keep trying xxx
So encouraged by your story and wanted to say how thrilled i am for you to have had such success with your treatment. Im desperate for good results myself, i started Capecitabine in july for 2 large lung mets 5cm and 2 cm in right lung, following primary 2005 TNBC then new primary same spot 2009 weakly pos. had chemo and rads first time then just tamoxifen after 2nd.
Dx may last year with the lung mets.
Sadly i had progression after 3 capecetabine...of 20-30% of original mets so Cape stopped and started docetaxol end nov. CT scan 2 weeks ago also showed docetaxol not working as there is now spread into other lung....onc said lots of small tumors between 1mm and 10mm. Also few more enlarged lymph nodes that werent there before! Although the 2 original mets have not changed since last scan.
I feel desolate that I'm now having to start a third chemo....carboplatin but with letrozole. Had my first in friday and feeling quite ropey today.
Im worried that I'm going through my options too fast. Its frightening.
Im amazed how good your results are and hope and pray i eventually get to that.
If you have any advice it would be welcome!!
Love and hugs to you .....bev xxxx 😊
Home from drs. Well we had a lovely chat. Talked to him about whether or not he though the cancer was in the lung lymphatic system. He said it could be but might be new, said it was "differential". Not sure what that was supposed to mean. He did say that can be a cause. Then we talked about treatment options. He said he wasn't sure that increasing the xeloda would do much and leaned towards changing treatment. I agreed it was time to try something else so good-bye xeloda hello gem..whatever it is called. I did ask him if it was in the lungs lymphatic system since my cancer is slow growing could I live longer than the poor prognosis I've been reading. He said he thinks I will be here a long time. I said more than a year and he said yes..as long as nothing unusual happened. Thanks for all the well wishes! Funnyface
Hello ladies, I'm freaking out. I got a phone report from my oncologist about my CT. It shows the tumors are the same, but the ground glass opacity has increased. I talked to someone who is very well versed in breast cancer and she told me that ground glass opacity can come from pulmonary lymphoganitic spread. My oncologist had said he still wasn't convinced that the ground glass was from the cancer. I have an appointment Wed. morning and I'm scared to death to go and ask questions. Funnyface
Hello, Helen. Barton from Cap thread here. Sorry to butt in on Lung thread, hope you all don't mind! Just thought I would add to your comment on breathlessness on Cap. I too am very breathless on Cap. I was breathless on Anastrazole (the hormone therapy tablets), and was glad to come off them for that reason, although not for the Secondary diagnosis reason! I have become extremely breathless on Cap.and can only walk very slowly. Not sure that I've noticed feeling better on week off, though. Will have to think about that as I have just started cycle 5 week off. Barton.x
I have a good think about it all and the arrows all point to IV chemo which makes me wonder why it wasn't given when I was originally diagnosed with secondary in lung in the first place? Anyway I can't think about the past I have to be in the now and do what I think is best for me. I hated IV chemo the first time around back in 2012 but I did manage a regime of 3 x Fec and 3 x Tax. As the progression is in my sternum and pelvic joints I will have to have a bone injection too. Oh and the wonderful steroids.
Thank you ladies for you being there.
Love and light
Sorry to hear about your stay in hospital - never a good place to be for a long time is it? Even though they do a fab job, you just want to get out! I dont usually post on the lung mets thread but I also saw a copy of this post on another thread so thought I'd add my experience.
I had FEC chemo (iv) 6 years ago and then went onto hormonal treatment which kept my bone mets stable for nearly 5 years. I then had progression and went onto Capectitabine. After being on this for 18 months I then had further progression and have now gone onto another iv chemo (docetaxol/Taxotere). I found Capecitabine was very doable, once I got settled with it as, at first, I really felt quite rough on it, and it doesn't 'interfere' with your life quite as much as the side effects of the iv chemo does. It did shrink my liver mets but quite slowly, presumably as they are slow growing as the post on the Liver mets thread described. I have found the iv chemo harsher, especially the first dose, but the second one has been much easier to handle - or the side effects have! Plus the Prof I saw at the Marsden (for a second opinion regarding treatment) felt that my liver mets would be 'ablated' in his words - something I don't think Capecitabine would have achieved (for me anyway). So, having had both oral and iv chemo, I feel the iv chemo is the best chance of reducing my liver mets to the smallest they've ever been to give me longer without having chemo again. Having iv chemo definitely isn't easy but I am still finding it doable. I hope you find the same if you go down that route and that you get some good results for your lung mets.
Hi dani....hope youre getting plenty of rest now youre home...it takes time to get over these procedures. As for the chemo options, not sure if I'm in a position to advise but it may be something that will be relevant to me in time as I've been on Cape now since july as a first line treatment. I'm hoping that it will work for a long time as I'm dreading going down the I.v. road too.
eard too that vinorelbine is another oral option but hadnt heard about its effectiveness, I suppose if my onc advised me to start on I.v. then I would probably take his guidance on that especially if there was progression. Difficult though.
Also think hard about non conventional treatments at this stage....could possibly hinder your treatment.
Sending you love and hugz .....bev xxx
I am back home after a 2 week NHS hospital stay with a return of pleural effusion and feeling overwhelmed with anxiety and concern regarding my onc appointment. I spoke with her today before leaving hospital and she has advised that I should try Eribulin which is IV chemo. Something I swore i would never go through again. She said there is the option to go back on oral chemo (previously on Cape but stopped working) called Vinorelbine which has less toxicity but less effectiveness that studies have shown. She said to hurry with the decision and not to wait longer than 2 weeks to decide. She also pushed for me to try the IV chemo over the oral one as they have just received funding for this and she wanted me to try it. I asked about trials etc. but nothing doing. Hormone treatment alone is something she doesn't feel would help.
I feel bewildered by it all as never expected for the Cape to stop working after a few months. Progression is now in sternum and sacroilliac. I don't have any confidence in the chemotherapy option at all and wondered if anyone feels the same way?
I'm Her2 neg and est pos.
I do have non conventional option to try but is not ready yet.
Love and light
Lulu, I'm sorry you are having a difficult time. I hope they can get you more comfy soon and out of pain. Hugs! Funnhface
Chocolates sorry just found your post. I typed to you last night and it's not here. I'm trying to keep busy with planning a big party to celebrate my 60th plus plans for a vacation. I live in the USA in Pennsylvania near Philadelphia. Hubby I are driving across country to Albuquerque, New Mexico for a big balloon festival. We both need to visit 3 states to have visited all 48 continental states. I'm anxious to get answers about my lungs but don't want them before vacation. I don't want to make any changes til I return. Thanks for responding.
Welcome back lulu! Good to have your post but sorry youve had such a rough time of it..this disease is bad enough without all the little extras that come with it eh?
Hope they get those lung mets under control and shrink the little uggers into oblivion! Do they know why they're still growing after rads?
Dont worry about posting here regularly....you have enough to contend with. Just get plenty of rest and enjoy that painting!!
Big hug for you ♥♥♥♥
Love bev xxxx