mets to lung
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Cive - that is nuts. Pfizer has a $10 US copay program - can you look into that? https://www.pfizercopayone.com/ibrance-card What would you take instead? Please don't sit out a month without meds. Pat - your dog is great. Sorry to hear Coach has a cone. I get my new kitten around the 22nd of this month - very excited.
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Cive - I'm so sorry to hear that. I am still waiting to hear from my extended health insurer but was relieved that Ibrance seemed to be much more accessible in the US. The whole issue of drug pricing is interesting. Here in Canada the list price of Ibrance is about $6500 per month. Ouch! Is there any way that you can light a fire under the folks holding the application?
I'm now dealing with another minor annoyance. My workplace recently changed group health insurer and I just received a letter indicating I need to apply for LTD. I did take 6 weeks off when I was first diagnosed and dealing with all that fluid on my lung but once I had the PleurX catheter I was keen to go back to work. (Not that good at leisure.) Well, as is typical with larger organizations, there is a process which involved a back to work specialist. It was decided that I would have a phased approach to returning to work. Not my choice but I agreed to it, starting back at 80%. It's not like I am not working at all!
According to our policies, I have short term leave (STIIP) for up to 6 months and need 15 days of continuous work without STIIP (or vacation) in order to reset the clock. However, the insurer is indicating that "There are significant impacts if you don't apply: we will not have a diagnosis of my original claim, and without a diagnosis, a review of future absences for possible payment cannot be made. Therefore, you will not be entitled to receive any STIIP or LTD benefits for absences due to illness or injury for any medical reason until you have a full return to work for a continuous period of six months or more." WTF?
I'm trying to get in touch with the back to work specialist as this makes no sense to me. Given that I have no desire to go on LTD at this precise moment, particularly now that I am on Arimidex with zero side effects beyond some edema, I am not thrilled with the idea of having my specialist or GP attempt to process this form (and BTW... it costs me to have them fill it out).
So, one more issue to resolve. My plan is to return to full time as soon as possible as it will simplify things but, as you know, there are no guarantees in how we will do from one moment to the next as we switch from treatment to treatment. Hopefully I will tolerate Ibrance well if I get to take it but...
I find it so challenging navigating the system at times. It seems that there is always a black and white approach to everything but MBC is not like having your tonsils out. We learn pretty quickly to roll with the punches but the system doesn't roll with us. And the funny thing is, I would likely be better off financially if I go on LTD. I can see why folks say to heck with it and just take the LTD.
Sorry for the little rant. Hope you all have a great Easter weekend.
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Pat, You needed to rant! Why is it that what seems fairly easy always gets f**ked up? I didn't miss my appointment because they gave me the Ibrance, but I can't start yet because my white blood count was too low. The state fixed the glitch there, so until something else goes haywire, smooth sailing. I go for blood work again today and if the white count has come up, I'll be able to start round 2 tomorrow. Hey with the way you've handled your pleurx, Ibrance and/or faslodex will be a breeze!
Now if you can just get your work thing straightened around, you'll be flying high again. Sadie must have enjoyed having you around more.
Judi
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Yeah. Well that's good news Judi. I'm glad they sorted this out so that you could get the Ibrance. I'm still in limbo in that regard. Not sure how long it will take for the insurer to respond. And my back to work specialist is also not responding. Sigh...
Sadie still has me at home two extra days a week as I work from home on my drain days. She was a hoot this morning, little wretch. She's not wild about getting wet and it was raining for our walk this morning. What a performance when we got home. She tries to dry herself off... on me! And then thinks it's hilarious when I try to dry her with a towel. Got completely worked up and started running around the house like an idiot. Nothing like a little pre-work chaos.
Hope the counts improve soon. Cheers. Pat
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Pat, keep us updated on the insurance/work problems. Meanwhile Are you back on arimidex?
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Yes, I'm on Arimidex. I sent a note to the RN from Pfizer's patient support yesterday and she indicated it often takes 7-10 business days before you hear. It seems we spend our lives waiting, and waiting.
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Hi All,
I've posted a couple of places do forgive me if this is a repeat. I received word from Pfizer today that my insurance is covering the Ibrance. Hooray! Now just waiting for Pfizer to connect to discuss shipment. Hopefully I can start treatment soon.
Pat
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hi sadie wonderful news feeling good already ..less worry
All the best Bright
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Judi
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Hi ladies and gentlemen, I'm happy to see that some of you are doing well, with some improvements and I'm also broken to see that others are not so well unfortunately.
I don't write a lot but sure I check in everyday and I send good vibes to everyone in need.
Forgive me but since I have met in my lungs, liver and bones I will I'll be repeating in the other threads.
In April we went to Denver and we had a good time, my kids got to ski. I didn't do much just hanging around and watch Tv, eat and we went to basketball game, baseball game, etc.
In the ski resort things didn't go so well as a I have mets in my lung and couldn't real walk a normal pace, we went to dinner and I threw up right there at the table.
When we got back to Costa Rica, it was time for another CTscan. When the RO and MO looked at the images they were really scared. I had fluid not only in my right lung but l also had in my heart. I hade to be admitted and have all the fluid drained. They left a drain in my hurt and in my lung. The drain in my lung had to be drained every day but the one in heart drained itself and once it was dried they removed.
I was sent back home and put on a new treatment (Gemzar combined with Abraxane). I've had only one infusion and was not so bad but the next day I started feeling pain alll over my lungs as if someone was punching me.
Now the MO wants me to have oxygen in the house but I'm so keen because I don't want to scare my kids.
On Friday I was admitted again as I had cough and and I was very tired. I've been in oxygen for the past 3 days that I have been herein the hospital. I feel better but I go home today and I'm scared. The MO thinks that I get panic attacks.
My only hope is that this new combo works wonders.
Take care everyone and let's all hand in there.
Aziza
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Hi theziz
i hope your specialist convinced you to have oxygen at home ...as this hopefully will continue to mprove your lung capacity also help you feel less anxious ...you needto be kind to youself ...continuous air flow from fans are good for coping with shortness of breath
Maybe send message to someone maybe @sadieservant directly to ask for hints to help with adjust to this problem
All the best Bright
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yes I have oxygen and embulizador
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The ziz, I was where you are a year and half ago, except no real pericardial effusion just a bilateral pleural effusion. I used oxygen during treatment. Got rid of the pleural effusions draining with a pleurx catheter on one side then, the other. Believe it or not I'm actually able to jog (albeit not exactly run, but then I'm 67) after having the catheters removed. I don't know for how long, but I do it while I can. To me it is better not to be short of breath so I used oxygen when I needed it. I got a little pack that only gave oxygen when I breathed as well as the generator to refill it.
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Cive thank you for for share your experience with me? Jog? I miss so much my morning jog.
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Hi;
I have had two infusions of abraxane and gemzar and I still don't see any improvement. I still use oxygen, get shortness of breath and a lot of coughing that makes me throw up.
I'm just so tired of not feeling good.
Cheer
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theziz, Both sadiesservant and I had to have pleurx catheters and drain them for a while since the initial treatments required either thoracentesis a couple times a week or the pleurx. I drained mine myself but sadiesservent has a health aid that comes. I just made it way too fast. lalady didn't get a catheter, but she only had to have her's drained once a month while she was on faslodex and Ibrance. I felt pretty good during that time because at least I could breathe.
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Hi lung ladies, I hope that we are all doing well.
I don't know if you already know about Hansaim passing on Feb 7.
I sent her a private message to ask how she was doing because it had been a long time since she posted something.
Her husband replied and shared the sad news.
Ziz
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Thanks for letting us know Ziz. It must have been very sudden. I didn't know her well as I was very newly diagnosed when she wrote to me on February 5th. Very sad.
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To all you wonderful people on this discussion board, I want to thank you for your collective wisdom and the beautiful spirit you possess in encouraging each of us on our personal journey with breast cancer. It has been a tremendous blessing to me. I am posting this in the threads I either participated in or read regularly due to my diagnosis. Sorry for duplication.
I've been meaning to update you all on the study I was in, but I couldn't because typing (or anything with coordination) was pretty much out of the question. I officially started in the study on May 22, and found out on May 26 that I had acquired a whole new crop of small tumors in the brain, while the one larger one had grown to more than 3 cm. I immediately began 10 days of wbr. There was a great discussion and it was decided I could stay on the study if I didn't have more than 7 days on 2mg of decadron a day. So, I underwent the radiation surviving on an alternation of Tylenol and Advil to keep the headaches down. We timed the decadron so I could have it down to the end. Really, I wouldn't recommend it, although it pretty much eliminated coming off the stuff at the end since the dose was so low.
My 40th birthday was June 25, which coincided with a low point for me. My coordination on the right side of my body gave up and I took to eating with my left hand out of necessity. I was already scheduled for CT scans on the 30th, so they added another brain MRI to go with it. End result, progression everywhere, but it's my poor brain that matters. I was immediately put on 4mg of decadron 4 times a day. What a help. I can now walk and type and slice a banana. I actually took a shower by myself a couple of days ago. But the brain gets tired and I have to remember to make allowances for it.
July 5, I went to see my onc for the actual report from the scans. I saw all the pictures and know the worst. She has never wanted to give me a time frame, but she sat there and said I have 4 to 9 weeks, and there is no way to know how many of those weeks I will have a functional brain.
There is just no way to convey how that hits. Maybe a long, long silence. In the 22 years that I have known my husband, it is the first time I have seen him cry. I know that he has, but I have never seen it. I'd rather not have.
My parents were visiting and working on our house. It was good to have them here. My older son came home from the summer camp where he was working, because he needed to be with me. That was before we knew, and he was planning to go back. He'll get it his stuff tomorrow when we pick his brother up from a week there. He does not yet know, and I dread the telling of it. I hope this week has been really good for him and that he has made closer friends with the other boys from our church that were there. He's going to need them.
I have been referred to hospice care, but we will wait on that (by mutual consent) until we return from a long drive to Ontario, Oregon to visit my big brother, who cannot come to see me. I haven't seen him in 3 ½ years. We were planning a little family vacation in August to DC. We've just changed the dates and direction. The onc said to go!
On the home front, we are making preparations while I can make decisions. I am amazed at the number of responsibilities I have to extract myself from and train someone else into. Hopefully that means I've been of some use to my fellow human beings. Yesterday we visited a couple of funeral homes in the area. It was a curious, but okay experience. We tend to be very practical and straightforward people, so it didn't seem emotionally taxing, although it must have been as we both came home exhausted. Since we have the choice, we want to have things lined up and sorted out as much as possible so my beloved ones don't have that descend on them at the last moment.
Strangely, I am at peace with all this. Back when I knew the bc had returned, I gave it all into God's hands. It was a good choice because He's carried me along and I've been happy and cheerful all the time. I probably won't be posting on this board again due to time constraints and the emotional energy involved, not to mention mental effort. However, I want you to know I think you all are the BEST!!! My beloved has offered to post on here to let you know when it's all over. That's a sample of my man!
Wishing each of you the very best. Keep your heads up and smiles on your faces. It always makes the day go better!!
With my family on June 17.
Aren't they just the best?
With my beloved on the eve of my birthday. Our church gave me a fantastic party!
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Hi ladies,
I was dxd earlier this year with liver mets and malignant bilateral pleural effusion after many years of just bone mets. The pleural effusion has not caused me any discomfort or breathing difficulties, it was only found on a scan. I am on Navelbine (oral), and due to have it again tomorrow.
Well no discomfort until tonight. My chest is so painful, and when I breathe deeply it hurts like hell, it has been like this for the last 4 hours. My GP and MO are both away for another 10 days, and my husband is away until tomorrow. It is 11.45pm, and I'm not driving myself to hospital down a steep and winding mountain road at night. I also don't fancy calling an ambulance, I live in a remote area and it would be at least 4.5 hrs round trip, if they have one available to come straight away.
So any tips on getting more comfortable for the next 6-7 hrs (until daylight)? Thanks
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hi freya sorry your by yourself im in australia
Would be good to give the ambulance ?hospital a call with your symptoms the info so someone can start the journey as it sounds like you would would not be able to drive down. Have them contact hospital for info ...is it any easier lying down feet up
Comfort vibes Bright
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Hi Freya,
I really think you should call an ambulance or the hospital as Bright suggested. I have had a right pleural effusion for several months. They inserted a catheter in February but before that I had almost 3 litres of fluid in the one lung. When the lung is that full I had severe shortness of breath on exertion but never the pain you describe. After the lung is drained it is irritated and breathing deeply causes me to cough. I did have some discomfort after eating when I was initially diagnosed. My digestive system was not working well and, while I tried to eat, I had nausea and gas pain/bloating in my chest area.
I know it's challenging but really feel you should see someone. This does not sound normal from my experience.
Hope it eases soon.
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Thanks for your replies, I ended up calling the ambulance. It is winter here, and the road is notorious for black ice, that was one of my main concerns. The trip was fine and the dx was bacterial pneumonia. I didn't even know there was more than one type of pneumonia. DH collected me from the hospital late today on his way home. No chemo this week, I don't know whether to Yay about that or not LOL.
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Take good care of yourself Freya
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hi freya wonderful to hear from you...glad you called ambo i even wondereded if it was heart issues as well so all good keep us posted
Huggs Bright
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hi theziz hope you have also shown improvement
huggs also
Cheers Bright
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Rgc77,
I don't have the words. You are an incredible, loving and brave woman. I am glad your faith has been supporting you during this time. I pray for you and your beautiful family. G- d bless you.
Bonnie
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Hi ladies I am new to this board. I was diagnosed with bone and lung mets in Jan 2016. We tried abraxane that did not work, then I got to do immunotherapy with Opdivo. It worked great, until I had to stop due to pulmonary toxicity. But my bone mets are gone and almost all the lung spots are gone! I have not done any treatments since Feb. but I will be starting cisplatin in Aug. to try to fight off the rest of the lung mets. I am not looking forward to it.
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welcome ks we seem to be a quiet group thankyou for posting your treatment info
Excellent that your mets has reduced
All the best bright
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Greetings to all you wonderful people! I am delighted to say I am still in the land of the living with all my mental faculties in place. Four weeks have flown by. We drove 4,335 miles between Northern Indiana and Eastern Oregon. We had a fantastic visit with my brother, which was the whole point of the trip. We also enjoyed the Tetons and Yellowstone. Two things on my wish list got covered.
Following are pictures of our trip and some wonderful things that happened right after we got home.
Supper with my brother's son and daughter. It was serendipitous that they were visiting at the same time.
My 80-year-old uncle and his wife drove 8 hours across Oregon just to see us. It was wonderful.
After spending two days visiting in prison, we headed off to the Tetons. We spent one night in a cabin. It was so nice to settle down and rest for a bit. We did our own food and just relaxed. My husband loves photography and is very good. He took three hours from dawn and just drove and took pictures to his heart's content. This is outside the cabin, about 2 miles south of Yellowstone.
Just a sample of his work.
Old Faithful obliged us during lunch.
My one walk was out to the Fountain Paint Pot and its friends. 8,000 feet and I didn't get on really well. I like breathing! The sun was really bright, hence the less than cheerful aspects.
i came home to another amazing experience. I've been working on my Master Guide for my Pathfinder Club. It's the highest level that can be reached and it takes a lot of reading and other time to get done. I haven't finished the material, but they Invested me anyway. It's such an honor.
After I got home that day, the best of all came to me. My sister, with some assistance from our mother, rapidly finished a quilt she had started for me. I saw all the bits and pieces before I left for Oregon. We were gone 10 days. The whole thing was completed by the time we got back!
This is with my mother, showing off the back a little. It is all quilted with notes and treble clefs. Because of the way it got done, it is completely reversible.
Myself, my sister, and our mother.
The title of the quilt is "The Music in Me". There couldn't be a more appropriate title for me.
Detail of quilt.
Just wanted you all to know how I'm doing and to encourage you. We take one day at a time, but we look ahead and set small goals of things we want to do. That's how we keep going in good health and cheerfulness. Blessings on each of you.
Raewyn0
