mets to lung
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blondie sending many warm hugs and well wishes your way
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Blondie, it's called folliculitis. "Folliculitis is a common skin condition in which hair follicles become
inflamed. It's usually caused by a bacterial or fungal infection. At
first it may look like small red bumps or white-headed pimples around
hair follicles — the tiny pockets from which each hair grows. The
infection can spread and turn into nonhealing, crusty sores."I'm worried because this time it's a little slow in healing. I clean my head every day when I shower, so I don't know how I got it. It could just be one of those opportunistic infections! Grrrrrr...
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Wow so sorry...
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I guess I need to quit lurking ...I have been dx with stage IV with mets to lungs. I have been reading the post of you great ladies and all you have been thur. I go to ca doc monday to get the full story but i have been so torn over it all. I was stage II bc in 2009. I will get my story out i am just still dealing right now. I want to thank each of you for sharing your stories and tx.... It gives me some hope because I just got the dx while in the hospital a couple weeks ago and i feel like i was handed a death sentence.
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Welcome, come whenever u want
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Hi Catesmom
I too also have fluid on my right lung only. Had shortness of breath just walking around. Had to have my lung drained about every six days. I finally had the doctor put in a drain where I do it myself at home. Best thing I ever did. I drain daily. It sure helps me a lot! Best of luck to you!
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liljohnnysmommy, Wishing you a warm welcome, although I am sorry for the circumstances that brought you here. I was diagnosed with lung mets, malignant pleural effusion, and malignant pericardial effusion, and am fortunate to be able to do everything I used to do prior to my diagnosis.
I think that the initial weeks and months after a mets diagnosis may be the hardest. Dealing with the shock and fear can be very difficult. But as others have said, over time it gets a bit easier, and you'll find many people who are doing well with a good quality of life!
If it’s possible, have the met(s) biopsied to see what their estrogen (ER), Progesterone (PR) and Her2 status are, since they may differ from the original cancer. If your cancer is ER+ your oncologist should be considering hormonal treatment, and if it's Her2+ then Herceptin should be added. Additionally, you may want to request testing to see whether the tumor has Androgen Receptors (AR), since there are some promising clinical trials that target Androgen Receptors in a similar manner as
current hormonal therapy targets Estrogen Receptors (ER).This is very important: Please remember to keep copies of all tests results and scans in case you eventually want to have a second opinion from a specialist outside your medical network.
You may also want to seek a second opinion at any point about your treatment.
Please post if you have questions, and wishing you a great outcome!
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Thank you BestBird
Its been a long month and half here. I started out on July 25 taking myself to the ER because i was having a lot of problems breathing and alot of pain in my right side. This was my local small hospital the er doc said i had PN and pleural effusion then admitted me to the floor to my PCP. They put me on antibiotics and after a lot of crying due to the pain a mild pain pill. On day 3 I found out i did not have PN I had a collapsed lung on the rt side my pcp wanted me to see the lung doc but it seems he was on Vacation. So instead of sending me out he continued to keep me and changed antibiotics even tho he himself admitted i needed drained. On the eight day i ask to have another doc and to be transferred out.
They sent me out to Central Baptist in Lexington and within less than 24 hours they had put their small version of a chest tube in ..it was called a "pig tail" ..they pulled off 1.5 liters of fluid total but after the first day i was feeling good....they had a ca doc come see me who told me he was a bit worried about the ct scan but after all the labs and stuff came back he said no ca but the surgeon said the antibiotics could mask infections ..I ask then " would they mask ca? and they said no" So I was feeling ok and they let me leave after 5 days.
Was home about 6 days when i started not being able to breath good again...family and I decided to drive to central baptist in Lexington instead of local hospital after what had happen last time. Central Baptist is about 3 hours plus from my home. In the ER they said the fluid was worse than last time so they again placed a "pig tail" and talked with me about VATs with talc. They also said that since no antibiotics in my system it would be better for the test of the fluids.
They decided to go ahead with VATS with talc and the surgeon took biopsies while he was in there....the ca doc came to talk with me but i was in and out with meds but he informed me the ca was back and mets to lungs. My world dropped I have been lost since. My husband was with me but he bless his heart is use to me being the question and answer person with MD's ...I do know from my electronic sent lab and ct stuff that it is ER+ , and PR+ and i think her2 neg. CT showed 2 17mm areas but that was not a final.....I go Monday to get the full story. Since getting out of the hospital little less than 2 weeks ago all I can do is cry. He put me on Tamoxifen before leaving hospital and i have had so many SE but i am taking it. I don't know which is worse my anxiety or my depression. He even told me to file for my disability. I am so torn over everything. Husband has been laid off for over 2 years I am the only one bring in a income my job is where our medical insurance comes from. Just seems like too much smacking me in the face and i don't know what to do....husband seems to be in denial ...love his heart keeps telling me " your going to be here for a long time to come". I don't know how long but after reading alot of the stage 4 pages i have some hope but i know i need to be prepared. even more I smoke...i am trying so hard to quit but they smoke around me and when i get anxious i grab them.
I keep praying to god that i can deal with this that i can make the life changes i need to make but I am really scared right now.
I will ask about the Testing for Androgen receptors.
Thanks and sorry I ranted on for so long
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Lol good 4 u, a brave person u r
Lil hang in there, I have had lung mets 4 over a year n whst best saidi is useful info, when I got the open lung biopsy that is what thry checked 4 so msybe thry checked 4 u
We r here come back n if u want to talk on the phone just pm me n I will call u
Question, is anyone on oxygen
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liljohnnysmommy,
Like others have said, those first weeks are the hardest but if you are ER+ you should be able to go on hormonal therapies which should be much easier on your body than chemo. At first diagnosis I had a 4cm tumor in my lung plus "satellites" as well as a bunch of enlarged lymph nodes in my chest, brain and eye mets. I have only been on Tamoxifen since the biopsy of my tumors in April and have no side effects. After the first three months my enlarged lymph nodes are all normal and my lung tumor shrank to 3cm. I used to have a persistent cough and sometimes had trouble sleeping I was coughing so much. Now I rarely cough. There are lots of treatment options out there for us and those of us on this board will do our best to help you navigate.
Hugs, Susan
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lil - So sorry to hear of your need to join us here but welcome. You will find this is a place of support and a wealth of information. I too am rather new to stage IV as I was only dx in May of this year. I know only too well what your experiencing. I had what I called rushes of horror when the reality of my dx would flood over me. In only a few months I have come to accept it and vow not to let it take my good days too. My MO assures me he has lots of stage IV bc patients that live many years and the key is finding the treatment that works for you. I am currently doing a drug trial and will find out shortly if its working for me. I reach out a hand to you as you can join our circle and hopefully find some comfort in numbers. Yes there are many wonderful women in our circle.Cathy
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liljohnnysmommy, you have certainly been through the wringer, and misdiagnosis of pleural effusion is unfortunately all too common. The good news is that you are ER+ and PR+, which means that there's a large volume of non-chemo options available to you. These can vary, depending upon whether you are pre- or post-menopausal.
I had a Pleurx catheter placed in my chest when I was diagnosed, and a litre of fluid was drained in the hospital. I had the catheter for 6 weeks until things dried up due to my systemic therapy, and fortunately (knock on wood) have not needed it again thus far.
When I was diagnosed, I thought I'd have less than a year to live due to the extensiveness of my disease. I've since learned that responding to therapy is pivotal to survival - even extensive disease can recede in response to a therapy that works for the individual.
Please know I'm thinking of you and feel free any time to send me a Private Message if you have specific questions. When you go for your consultation tomorrow, please bring along a list of questions and jot down the answers so that you can cover everything that's on your mind!
With best wishes!
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Thank all you ladies for the encouragement! Tommrow is got me so scared but I know i got to get the information so that i be proactive in my treatment. I feel such a baby right now.
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good luck
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liljohnny so sorry your going through this. Good luck tomorrow.
I'm still anxiously awaiting my chemo plan for the new lung issues and chest lymphs. I meet with mo on Wednesday but still have 6 more wbr to finish first. Finding it hard to get a good breath the last few days. Wondering what drugs will be suggested. I think they sent off to check my androgen receptors earlier this year but the day the mo has to see me in the ICU was the first appt scheduled that we would have discussed anything. Anxious.
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Dear Johnnysmommy,
Welcome to this thread! Please keep sharing your thoughts. It really helps with the anxiety and the depression! September 11th is my one year anniversary since I got my "death sentence". It was the worst time of my life. I was in the hospital for 5 days with pleural effusion and the thought that death was imminent. Today I am breathing very well and I feel I have many, many years ahead of me.
Hugs,
Brenda
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Brenda,
So happy to hear you say that! I'm hoping to be right there next to you for many years ahead!
Hugs back, Susan
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Thanks Brenda
I hope to be there with you all as well but my Doctors appointment today was very disappointing. After a 3 hour drive and a 2 hour wait due too hubby likes to get there early. When Ca doc walked in he looked at me and said the Tamoxifen was working (at this point no new labs or ct scan) He then said you know how i know? i of course said no. He said "because you have not been back to the er" .....I am so confused and torn. How can he say that? because i have not been back to er is not a ct? ....... I had the VATs with talc to help with the pleural effusion so to me thats why i have not been back to er. When I ask about tumors or nodules he did not give me direct answers other than "its on the out side of your lung in the pleural space"....ask about the Androgen Receptors (AR) testing and he stuttered and said they don't do that its still new and being studied . told him about all the side effects from the tamoxifen and mainly ask for thing to help off set them some....stomach meds, stool softners.....he was a bit smart " if this is so bad how u going to handle chemo?" ....informed him real quick last time chemo all most killed me but now I have to wait till Oct. 6th to do a ct scan and follow up again with him on oct. 15.........thinking maybe he is not the doctor for me.....I just want some one who will be up front and honest with me....I don't want to be flying blind. I don't feel i was aggressive i just ask direct questions and got No real answers. Now just lost more
thanks for letting me whine...I am doing my best to put my hand in gods and let him lead me where i need to go.
Frances
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Frances, sounds like you should get a 2nd opinion! It's so important to have confidence in your doctor and your treatment plan. A second (or 3rd or even 4th) opinion can give you the information you need to evaluate and participate in your treatment plan.
A source I discovered to educate myself is the NCCN website. NCCN is a consortium of cancer treatment professionals who come up with guidelines and spreadsheets on the current standard of care for many different types of cancer. To get access to the treatment guidelines that are provided to doctors, you have to register as a doctor, but they don't check. Reading those guidelines helped me to see that my doctor was on top of the most current treatment recommendations.
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littlesjohnnysmommy: what a bum! Maybe it is not the right fit. Pay attention to our fears and concerns.
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what a disappointing dr indeed Frances. Communication is so important. I hope you get a second opinion if not just for a second personality. Hoping he is right though. :-)
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treatment like that from any doctor is not ok. You are asking very legitimate questions. Is there another doctor in that practice you can meet?
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Frances wow not what u were looking 4, ask aroundd if u want, remember the rr works 4 u n can fire yhem at any time. U have to feel safe, understood n respected..
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well here's a huge load of hugs to you, Blondie!! It sounds like you have really been through the wringer. Wish there was more we could do to help xxx
Had chemo on Fri - have this Friday off - interesting we get chemo on the same day, Brenda - will think of you on Fridays specially now! Hope the inflamed hair follicles clears up soon. I seem to sleep the day after chemo too, despite the steroids - my night's sort of up and down for the first 2 nights after, but my body is so tired I crash all day for 2 days!
Had a bad bout of diahorrea on Saturday night, slept most of Sunday. Went and got Neupogen shot yesterday morning, had a tea with a friend, and spent the rest of the day on the couch. Had the 2nd Neupogen this morning, so that should set my wbc right now. Then a lymph drainage massage, divine, now I'm on my couch, resting from my terribly energetic morning! A bit later a friend is taking me grocery shopping, time to get some berries and good yoghurt, and some other stuff. I eat such small amounts at a time, so I freeze in little containers, where I can. Eating is a challenge, have no appetite, plus I have a bad metallic taste in my mouth, which makes everything taste foul. So will get some plastic forks (god, I hate eating with plastic forks) and more lemon drops for that. I have a lot of muscle weakness and it's an effort to do stuff, need to rest often. So going to the shops will be a push, but I will rest up again at home after! I figure the less I use my muscles the weaker they'll get, and it can get to be a vicious circle. So I often have to drag out whatever will power I have to get going..
I'm feeling very hopeful that my scan will show at least stable, tho of course I'd like some serious regression. I've found I've been so bad at predicting the results of my scans, when I've been sure there's been improvement, there's been progression; when I've thought there's been progression I've gotten stable - so I should really give up on trying to guess, but it's hard not to! Going on my past chemo experiences this should do some good for a while, even if it's 6 months, then there's always been progression despite the chemo. Maybe this time it'll be different?
xxx
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sounds like a full day Carol! I hope your SEs improve.
Curious which chemo regimens you guys are all on. I'm still anxiously awaiting my MO appt. wbr got delayed yesterday and it's making me feel desperate and helpless.
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It just made me my nervous and anxious for him to act like that
. Carol I hope your SE's get better0 -
Carolben - I know what that Taxol can do first hand. That is such a terrible metallic taste it leaves.. with drinking too. Hope better days are ahead and hugs to you and all.Cathy
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liljohnnysmommy, I agree with Beatmon, 33skidoo, and DeleriumPie about obtaining a second opinion or even switching doctors. AR testing is not cutting edge, although it's a relative newcomer. And the comment that since you are having se's on Tamoxifen, how you will you deal with chemo is totally inappropriate.
Bottom line is that you need to find and work with a doctor you both like and trust. And one who is willing to answer your questions fully and candidly.
Sorry it was such a difficult visit - hopefully with a new doctor things'll become much easier!
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Frances, Please get another oncologist to handle your care. Your current onc either needs a nap or a vacation but either way you need someone who is smart and follows the standard of care for your dx..AND sees you as a person. It is not uncommon to change oncologists....your association and care with that person will be ongoing for a long time...needs to be honest and follows the standard of care. You deserve much better. Hugs, Peg
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Hi Frances: My mets are also in the lining of my left lung. At one point, after 3 months of carbo/gemzar, my tumors "disappeared". Then they came back after 3 months of no chemo. We tried carbo/gemzar again but this time I had progression, but still all in the pleural lining. In the past year I have had 3 attempts to biopsy my mets, but the information I'm getting is very limited, and nothing about androgen receptor status either. The individual tumors are just too tiny to get a nice tissue sample. I saw my onc the other day and I asked him if we could send out my lymph node biopsy (done a few months ago) for a genomic profile. He said, "We are not there yet. You are in your second line of treatment (Abraxane) and a genomic profile will not change the treatment plan that we have for you." Then he enumerated about 7 more chemo regimens I could try in the future. So, there is a reason why my oncologist is not so excited (as we are) about the profiling of my tumors. It does not change the treatment plan. We are not there yet. I told him I was frustrated about the result of my liquid biopsy, which stated that I had no known mutations at the moment. He reminded me that this result means a good prognosis, because there were not enough circulating tumors in my blood to warrant a search for possible mutations. Well, I know there's mutating going on because there was active cancer according to last ct-scan. So I continued to argue with him, but I lost the argument because in the end he is the professional and he has done more research about it than I have.
I agree with the others that your doctor was not being proper in his response to your concerns. But it does not mean he is not knowledgeable or capable of dealing with your disease.
Carolben: Your s/e's seem severe. Especially because you were so active before this regimen! I am hoping and praying that your s/e's diminish in time. BTW I have the week off as well! Whoop whoop!
Hugs,
Brenda
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