mets to lung
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Pat: I'm sorry they didn't give you pain meds, you can still call and ask again. For me the pain was only a problem for the first two days. It did hurt a little (made me cough) when they drained me and lung re-inflated when they put it in but it was only 800ML. Will you be getting a home health aide (usually RN) to do the first drain? That was helpful to me to have someone show me the steps. I also get a list from my RN that I could paste on the bathroom mirror so I could just look at the steps as I was draining the Pleurx. I take it you have one on one side only? Hopefully things will really look up the first time you are able to take Sadie out and be able to breathe easily. Keep us posted!
Judi
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Hi All,
Pain is better today but still hurts when I move, cough, etc. It is only on one side, thankfully, but I need to remember not to use my right hand for everything. Bit challenging as I am VERY right handed. But I expect by tomorrow I will be better. And the folks who look after Sadie have been lovely. She came home from care this morning much later than normal, having been for a walk already. Hooray! Not sure how I would have handled her pulling.
Breathing is great and the coughing is largely gone. Hopefully we can keep it that way.
Here in British Columbia things seem to be a bit different. While I have some supplies to allow me to change the dressing, I am not able to drain it myself. I will have homecare come twice per week, at least to start, to drain it. I'm still trying to figure out how this works and what it will cost me. Cost was not discussed when I met with the surgeon for the consult. It was only when they discharged me that they mentioned that 'the supplies can be expensive'. I think typically folks that get this are at the palliative end of the spectrum so the cost is covered for them. I'm not there yet!!! LOL
I will have to see how this plays out. I have a gold plated extended health plan which should cover the costs but who knows. I'll have to see.
Thanks for all the support. Pat
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Rooting for a safe recovery Pat! Please take it easy on that right side. How big is Sadie - sounds like she has the energy we wish we had. lol Hoping your goldplated insurance covers those costs. I find mine are covered by my PPO including Ibrance! But CA is different than CN. We had a ton of rain last night here in LA, watched a few cars go into sink holes. Glad I worked from home yesterday. Linda - how was your faslodex shot? Rooting for you and Cive too.
(()) Claire
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This must be the first time that health care in the U.S. is less than that in Canada. If you are able to change the dressing, why can't you actually drain it? You must be able to reach it. Happily for me my pulmonologist (like your respirologist) was all in favor of me draining it by myself since I live alone. Yes, you'll want help the first time, but after that as long as you can reach it and apply a new dressing, you should be able to do it yourself. The decision to do it myself was easy for me. The first time a RN came and did it but the second time it was a CNA and she managed to cut the valve off the catheter taking off the dressing with her scissors. She hadn't washed her hands or put on gloves before she started, and never did. I decided I'd be better off doing it myself. That is an important part too, making sure you keep things sterile. Hope you get the supplies figured out without going broke.
Thanks for the well wishes Claire, I won't know anything until I see the NP on the 28th, and they may wait until I get my scans on the 6th of March.
Judi
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Claire - the fas shots went like a charm! I followed all the instructions on the Fas thread and my nurse said she was a pro at it. I don't feel a thing in my butt!
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Linda:
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Go Linda! Since today was a holiday I had an IV of Vitamin C + a B12 shot. It really helps with my energy, insurance doesn't cover it, but that is what savings are for. lol Hoping all ladies are breathing better today.
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Well, had my first visit from the home care nurse today. She was great and guess what? She was surprised when I asked about paying. She called later in the afternoon to confirm that until I hear differently they will bring the supplies (apparently if I pay then I need to buy the supplies). So I have no idea what that was all about with my surgeon. It's a relieve that I won't need to remortgage my home because of this stupid lung.
I woke up in much less pain this morning. However, the draining process apparently stirred things up so I have relapsed slightly and my lung is once again reinflating. It's only been a few days and she pulled 900 millilitres off of my lung. Geesh! That's depressing...
Looks like chemo tomorrow and then home care on Thursday. Looking forward to hormone therapy and dry lungs...
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Pat: That is great news! My home health aide was suppose to supply the kits, but didn't and since I fired her right off, I had to order them myself. However my insurance company still paid for them, but I had to buy them from a specific supplier. My concern is that you will be re-inflating that lung every time at only 2 drains a week. Draining every other day I still was pulling off 800 or 900 ML each time on my worse side. You are not suppose to drain more than a liter each time. It will help to slow it down a little especially when you start coughing, just ask your aide to slow it down or pause when it starts to hurt. And it gets better after you get use to it. Here's to some great breathing while walking Sadie.
Judi
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Pat: How is it going with your Pleurx? Walking Sadie again?
So my skyrocketing TMs resulted in a CT scan that was pretty good other than a lesion in my liver that went from mm to cms. Now my MO wants me to switch to Faslodex with Ibrance. Haven't decided about the Ibrance but I'm scheduled for my first Faslodex injection next Tuesday. He got mad at me because I kept interrupting to try and ask about the Aromasin instead. He was giving his spiel and didn't like that I was thinking of something other than his recommendations the Faslodex/Ibrance first, Faslodex alone or Zeloda. Suggested I might want to find an other MO.
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Hi Judi
The catheter is definitely an improvement in terms of the breathing but I have been feeling a bit down about how little progress I am making in reducing the fluid. The logical part of my brain gets that I have only had two rounds of chemo and it takes time but the crazy person in my brain is getting a bit panicky. I thought things were going in the right direction but last Thursday they drained more than 800 millilitres after only three days and Monday they stopped at 950 millilitres. They have been draining me Mondays and Thursdays but I had to move it to tomorrow this week. We'll see how much I have then but I have noticed I am a bit more short of breath on my walks again at times. Oh, and I'm coughing more again. It just feels like the BC is picking up the pace (again, the crazy person talking).
My MO wants to use the fluid to determine if I am responding to the Taxol. I will see him in about three weeks after my third chemo infusion so it will be interesting to see what he decides to do. He did mention switching to another chemo regime but I wonder if we shouldn't just move to Arimidex. So many of you just went on hormone therapy. To be honest, I'm a bit freaked out about moving through the chemo arsenal so early in my Stage IV diagnosis. I so want to get to some semblance of normality which is difficult when I'm dealing with this stupid lung. It makes me feel like I have a terminal disease...
I can't believe your MO behaved that way. Was it just an off day for him? Before you make the move maybe you can try to discuss this again, asking why he feels that this is the best course of action at this time. Do you get copies of your reports? That might explain his thinking.
I know it seems that the Faslodex/Ibrance combo is quickly becoming the gold standard in the States. Here not yet. My MO (in his notes) suggested chemo then hormone therapy (Arimidex and then Faslodex). I intend to ask him about Ibrance when I see him and also question if he feels there is any advantage to starting with the Arimidex. It's so challenging to know what's best as they all have their preferred treatment pathway and it seems the advice changes constantly depending on new discoveries and the source. It does feel like such a crap shoot at times.
Hope you can get your relationship with your MO back on track.
Pat
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Hey Pat(and Sadie)! I don't know how long it takes for Taxol to work on decreasing the fluid, but there is someone (I think Claire) who was on Ibrance and femara and it took almost a year I think before she could stop having Thoracentesis monthly to drain the fluid. My pulmonologist had me draining every other day because he said that keeping the fluid down helps to get a spontaneous pluerodesis more quickly. The letrozole wasn't really any help at reducing the fluid, but it was keeping other things at bay apparently. How long has it been since you stopped taking arimidex? I know you didn't like the femara, but it has been approved with Ibrance in Canada (and funny how things change once you get mets). My original chemo was ACT so I had already had taxotere and I was taking Femara for a year and half before my TMs took off last month.
And no it isn't the first time my mo has gotten a bit snippy. It happened when I first met with him with me trying to tell him where I was on the mets thing and him trying to tell me how I had nothing to worry about. Standard MO pat on the head. He is the only MO with my medical group so it would be really a pain to change MOs and I see more of the NP who I get along with well than him. I will be seeing her monthly now if I go ahead with the Ibrance since I will have to do blood work every week. I think MO is really rooting for Faslodex + Ibrance because the new/bigger met is in my liver.
Judi
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Sadie, hows the draining going? Getting any less now?
So I agreed to faslodex and ibrance. So far so good after 1 day.
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Hi Judi,
I'm feeling much more optimistic this week. Nurse tried to kill me on Friday night though. I had a new nurse who had not done many of these drains so one of the other nurses came with her (the one that tried to kill me by continuing to let the suction run after the lung was dry - I had several days of discomfort as a result). The new nurse ran the suction so fast that the catheter sucked up against my chest wall (I think) which caused a bleed. They stopped at 950 ml but I still had lots of days of discomfort as a result of the hickey on my chest wall.
The good news is that it was only 850 ml on Monday but that was only 2 1/2 days. This time I am sure it was dry. It's interesting. I'm not sure if I am more sensitive than others but as soon as bubbles start to show up in the catheter I find I have a sensation that runs up my chest. I think it's from the vacuum effect but I have some issues with deep breathing and coughing for about an hour afterwards if we shut off the suction at that point. If they let it go on it takes days to feel normal.
I had my third round of chemo yesterday. Generally feeling pretty well, although slightly punchy from lack of sleep (suspect the steroids). I am looking forward to finishing up chemo so that I can move on to the Arimidex. I meet with my oncologist in two weeks so will discuss the plan at that point in addition to probing a little more deeply into expected prognosis. He indicated "I would do well for a good long time" but that is a tad vague. I know he will be guessing but it would be helpful to know if we are talking 5 good years, 10 good years, etc.
Glad you were able to resolve the treatment question. What made you decide to include Ibrance? I'm curious as this is another question I have for my MO. He has indicated Arimidex first and then Faslodex. I would like to know if Ibrance is likely to be in the cards given the very positive outcomes reported. Given my age I would like to get as many "good years" as possible before they have to start throwing the heavy stuff at me. That's when the whole quality of life debate comes into play.
Let me know how the treatment goes.
Cheers. Pat
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Well I spoke too soon about clear sailing. I was supposed to have stitches out on March 2nd but the home care nurses never felt comfortable doing this with less than optimal light at my home. The problem was the surgeon tied the stitch quite tight around the catheter. Ultimately the decided I should have my GP take it out. They gave me a sterile kit, bandages, etc. and sent me to my doc.
I couldn't really say why but this whole situation made me very nervous. I needed to be. Despite the fact that I told the receptionist what needed to be done when I made the appointment and also told my GP about the stitch that needed to come out but nurses were afraid they would nick the catheter he misunderstood what was to be done. He was running behind schedule and I guess in a hurry as a result so didn't listen.
I gave him the kit but indicated they did not provide sterile gloves. No problem he had some but didn't use them when he ripped the bandage off, letting the catheter drop onto the highly unsterile exam table. He did thankfully look for sterile scissors but pretty much had the kit spread all over the place. At this point I think I was having palpitations.
He clipped the stitch but then kept tugging and pulling while I said "ow" over and over. Finally he asked if it was attached anywhere else as he could not get it out. Ahhh. He was trying to remove the catheter! Thank god it is stitched in under my skin! He then proceeded to soak me in alcohol instead of using the swabs provided, was going to put a tiny bandage (clear sticky one - can't remember the name at the moment), instead of the big one, over top of the catheter instead of putting a gauze pad over it.
So, tonight I can stress, hoping that he didn't do any damage to the catheter. If he has, I will need to go through all this again and who knows how long it will be until I can get that scheduled. At least home care is due tomorrow so I won't have to wait long.
Are we having fun yet
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Oh Pat you poor baby. Are they trying to figure out how much you can put up with? I told you I started draining myself after the CNA cut the valve off my catheter. Sounds like you have a whole slew of health care folks trying to reach your breaking point. And yes I didn't mention it (probably because it was the most painful part), they generally take the stiches out in 10 days. I was really lucky that I got referred to a top notch lung doctor associated with a highly rated hospital and my care regarding the catheter was wonderful.
Ibrance has only been approved in Canada with Femara I think. It is possible it will get approved with Faslodex soon. Were you off arimidex when you recurred? If you were taking it when you progressed, you probably won't respond to it. I had never taken an AI because I didn't have insurance so I did respond very well to the Femara for 18 months. My latest blood test my ca2729 was over 1700, more than doubling from the month before. At least we know that TMs work for me, so I have to agree that my MO was right when he insisted I go on both Faslodex and Ibrance.
Perhaps you will find that you can accept the Femara with Ibrance unless faslodex gets approved with ibrance in Canada. If you were on any AI when you recurred, they will probably not work according to my MO. And now I've called you a dog (wrong name) but speaking of Sadie, how are your walks going.
Judi
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There are always a few adventures on this journey Judi. I had some great stories from my first go around. And yes, they do seem to want to find new and interesting ways to abuse me! I think things are likely okay. If he nicked the catheter it would have leaked through the night. And I don't imagine that he managed to dislodge the catheter (although he tried hard). I'll know in an hour when the nurse arrives to drain me. Thankfully I just had chemo on Tuesday so my blood is still good.
Definitely looking to have the surgeon take out the catheter when the time comes. The GP is not coming near it again!I am many years out from my original diagnosis so Arimidex is still an option. I finished all treatment in 2010, five years of Tamoxifen following chemo and then three years of an AI. I was on Femara for almost a year and then switched to Arimidex. The Femara made me soooo bitchy. It was like perpetual PMS. No fun for anyone! I can be kind of cranky at the best of times but that was very much over the top.
They don't seem to do tumor markers here so I don't have that to rely on. I do have complete faith in my MO so feel that I am in good hands and that I will do well on the hormone treatments once I get there.
Walkies with Sadie are going well. It's great to be able to breath again. I do find I don't have as much energy as I would like still which cuts down on the play time a bit. She has these silly games she wants me to play, chasing with a ball, playing tug, etc. All require some exertion and endurance which is in somewhat short supply with the abuse being heaped on my body (chemo and lung tortures). At least spring seems to be arriving in Victoria finally and the days are getting longer so the walks are a bit more fun.
Thanks for checking on me. I appreciate the support and guidance more than you know.
Pat
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Pat, the taxol has a side effect of robbing energy. Perhaps you could have a heart to heart with Sadie and explain that. Yeah right.....
Yes, I would say leave all things related to the Pleurx to the surgeon that put it in. Good heavens, you'd think your gp would talk to the surgeon before messing with the thing!
If you can get on an ai and get stable for awhile, then hopefully by then Ibrance will be approved in Canada with faslodex. I was progression free on famara for 18 months. TMs for the most part with someone like me who is really responsive can prevent having to have CT scans or PET as often. My MO will probably never order another scan until my TMs skyrocket.
Do you have a oncologist? Does s/he talk to your GP?
Judi
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Doctors communicating with each other? What a novel concept. No, my oncologist does not communicate with my GP (just sends reports) and the surgeon has not communicated with either my oncologist or the GP. That was one of the comments the GP made was that they should send orders with this. Part of the problem was that the nurses were supposed to do it (and there really is no reason they could not). They punted me to the GP and he had no idea what he was doing. But, he should still have slowed down and listened to me when I said remove the STITCHES. Not remove the catheter. But all is good. I just had my lung drained again and it was only 600 milliliters. Woo hoo! Let's hope that's a trend.
I am hoping that Faslodex and Ibrance will be an option by the time I need it. I am fortunate as my MO's area of research is extending the resistance period and/or eliminating resistance for hormone therapy so I think I will have his support when the time comes.
I have tried to reason with Sadie... not working...
Pat
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Pat, maybe the taxol is kicking in! Wouldn't that be lovely! How long are they going to keep you on taxol?
My MO only sends a written report to my GP, but does it every time I see him. He also was sending the reports to my lung doctor before lung doctor released me from care.
Yeah, I don't have much luck with my heart to heart chats with Coach either. He just wags.
Judi
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Hi Cive and Sadie - rooting for you. I've been on Arimidex along with Fas+Ibrance for 16 cycles and my lung draining ended after 12 mos. Last drain I had was only 300cc. I am hoping Ibrance and/or faslodex gets approved in CN for you soon. When does your Taxol finish?
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Hi Ladies,
Yes, perhaps the Taxol is starting to do it's job. I'm now just about at the halfway point, had Round #3 infusion on Tuesday. MO has recommended six cycles but did suggest we might switch to another drug if I was not responding. I should know what he thinks when I see him on the 29th. I am looking forward to Arimidex. I am at the most challenging part of the Taxol cycle today with extreme bone pain and body aches.
Interesting that they stopped draining at 300 cc. My surgeon has indicated that he wants it below 50 before they take out the catheter. So, I have a ways to go yet!
Thanks for the support. Pa
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Hi Claire - "seeing" you on the fas/ibr thread too. Butt shots just a minor annoyance, they really don't hurt, just the standing like a heron. First day on Ibrance I had a little indigestion, but not since so it may not have been the Ibrance.
Pat: You're making less juice so it looks like the taxol is working! Time for the happy dance. Wishing you spontaneous pleurodesis soon.
Judi
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Judi - you had me a "standing like a heron". lol Sometimes those shots take so long standing on one leg, but it's worth it to go slow to reduce the pain later. I drive home an hour from UCLA, so my butt needs to feel ok. Pat - I did not have a catheter, rather I drove to the hospital for a monthly drain - my IR said we need a little fluid in our lungs to function, but not sure how much. Happy dance for you, and glad those trips have subsided for me. Breathing well this month and looking forward to some sun soon - sadly looking at more rain next week. Has LA become the new Seattle?
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We here in the desert have really appreciated the rain. When I go jogging with dog, there is even grass growing in the sand with the weed flowers. Unfortunately it may turn into a fire hazard later in the year.
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Hi ladies;
I'm on navelbine two weeks on and one week off. I have had four treatments so far.
During my week off I cough a lot, the shortness of breath comes back while when I'm in the weeks on I feel a lot better. Is anyone on navelbine here?
TIA
Ziz
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Hi Ziz - there is a Navelbine thread where my friend Naturegirl is on after Ibrance and Xeloda failed her. How are your treatments going? So far I have had no lung or pleura recurrance, but will get a PET end of the week to be sure. Just finishing taxes this week. lol
(()) Claire
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Hi Ziz,
I'm not on Navelbine but can relate to the lung issues. I have had three rounds of Taxol and am not sure it is actually working for me. I currently have a PleurX catheter to drain my lung but have noticed that I am a bit short of breath now when I exert myself and the frequency of coughing is increasing again. I see my oncologist on Wednesday and suspect that he may decide to shift to something else. It does seem odd that you feel better during the time you are having treatment though... I would have thought you would see an improvement over time.
Claire, did you go straight to hormone therapy? I'm thinking that rather than another chemo regime I should just go on an AI. I know it takes longer for it to kick in but I feel that I would rather save the big guns until progression (MO has suggested Xeloda if Taxol fails).
Pat
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Pat: I had hormone only therapy for 18 mos before the big fail. Is the amount of fluid you are draining continuing to fall? It sounds more like it isn't draining right if you are getting short of breath again. Don't you just hate that?
Judi
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Hi All,
Well, met with my MO today and he agreed that the Taxol was not working. He also agreed that, given that I am managing well with the catheter, we have a bit of time to get this under control. So, the decision is to switch to An Arimidex/Ibrance combo. He has me starting on the Arimidex tomorrow but it will take a few days to get the Ibrance. Fortunately I have a very good health insurance plan as Ibrance is not currently covered under our provincial health care.
I'm happy to avoid chemo for now. It may be illogical but I feel like I want to keep those options in reserve if things go sideways.
Overall it was a good appointment with most of my questions answered. The one issue for me was the challenge of discussing estimated survival. We skirted around the issue but he did indicate that median survival was two years. That definitely took the wind out of my sails! While I get that my prognosis is better than that given my long period between diagnosis and treatment, I am struggling to figure out how to move forward. In particular, should I continue to work or should I seriously consider LTD if that is an option? Unfortunately my pension is not that great if I retire now as I don't have that many years at my current job and am too young for many government benefits. Lots to think about.
I know I am more than a number but it's hard for me to get past my need to plan. LOL. It's what I do! I just want to enjoy my life and know that in some ways work gets in the way.
Pat
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