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mets to lung

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Comments

  • brutersmom
    brutersmom Member Posts: 948

    Sunshine99 I got it done. Yes I did shed a few tears. No one to help. My husband works late Thursday night. Made him go along today to pick out a new refrigerator. It was 10 years old and the same model was less then 50% the price of repairs. Got a few different or extra bells and whistles this time. Think it's been going for a couple of months. It hasn't been keeping food as fresh recently. It comes Thursday. Things will come back in as I need them so that won't be so bad. I see the pallative care doctor on Tuesday. I am adding my knee to the list of things that I need help dealing with. I have more issues from drug side effects and other injuries the cancer itself right now.

  • irishlove
    irishlove Member Posts: 574
    edited August 2023

    @brutersmom Gosh when it rains dang it pours. Hope you didn't loose any food as the price of groceries today. That poor knee. I guess I'm at a lose why they won't do surgery if it's really necessary and it sure sounds like it is! Our ice maker broke on our newer fridge under warranty. The repairman had to come first to take pics to make sure we aren't fraudulently trying to get something for nothing. It's now been a month and no ice. I can't believe the cost of a new refrigerator. I noticed some rusting and ours is only 2 years old! A repairman told us might as well buy the cheaper models cause they all last about the same amount of years. But I'm like you, like some bells and whistles. Praying you get that knee fixed and not be in pain.

    @AJ I wonder how the MO rates our treatment plan when some things are settled and others crop up. Or is the Radiologists just skimmed over it. I understand sometimes they just go for the most significant findings and the next guy picks up on something else. Anyone hope that you get good news in all of this.

  • brutersmom
    brutersmom Member Posts: 948

    Irishlove. A refrigerator should last 10 to 12 years. I buy from a local company that is know for it fair and honest service. Might pay a little.more but it is worth it. As for my knee surgery would be complicated. I would have to stop Ibrance, lungs have to be clear I will know after my ctscan this month. I had evidence of intertertrestial lung disease on my last one. I have side effects from letrozole that require me to take effexor. I can't take naids while on effexor so I would have to go off Letrozole and Ibrance while detoxing from effexor. Plus in order to take the anti inflammatory meds I need to take a high does ulcer drug which could interfere with any cancer treatments. It's a mess. Sometimes when I start thinking about all of this I just want to give up. My knee has been better since the gel shot but this latest flare up has me frustrated.

  • irishlove
    irishlove Member Posts: 574
    edited August 2023

    @brutersmom Darn that is a complicated situation. I guess the best is to deal with one thing at a time? I can tell you I lost the ability to use my legs with an MS attack years ago and it was very upsetting. Hope your leg heals and quickly. Have you found relief with breathing inhaler? That pulmonologist I was trying to track down from the hospital visit when I was first diagnosed, showed up at my visit last week. What a great surprise as I adored her. She gave me symbicort. I guess that's a steroid so a no no for you? What about hyperberic treatments? If I recall SusaninSF recommended that treatment for lungs?? It's like one drug helps and screws up something else. I know being off Ibrance worries me and I think I have to do that in order to start radiation? So I understand your concerns and frustrations. Hoping for the best for you going forward and healing coming your way.

    EDITED: I want to say I hear you about sometimes wanting to give up. Do you mind my asking your age and where you live? I feel a strong connection with you as we are both diagnosed close together with same b.c.

    Laurel

  • brutersmom
    brutersmom Member Posts: 948

    Irishlove. My breathing is good. I work out a lot and have good lung capacity but I do/did have evidence of Lung damage in the right lung. I will find out on the 30th how extensive it might be. I dug out the KT tape today and hope it helps the knee as quickly as it did my elbow tendinitis. The swelling in the knee has gone down but it feels like it may have inflamed a tendon or two.

    To answer your edit question. I am 70 but most people thing I am late 50's. I got the Smith family genes. Apparently that also includes a cancer gene. A lot of my family lived to 100 on that side. Not sure I will be one of them. I live in a rural area in Berks County, PA. My mailing address says Mohnton but it take 20 minutes on backroads to get there. You may have heard of Reading, PA from monopoly game (home of the Reading Railroad), pretzels or factory outlets back in the 70's or 80's. I am originally from York, PA. By the way, Reading PA is pronounced redding. LOL.

  • gailmary
    gailmary Member Posts: 512

    AJ it's my guess he will still take the wait and see approach unless the tumor markers have been going up. Expecting to hear of progression and a new drug isn't as scary as it used to be. The meds aren't as harsh as in the past I think.

  • emac877
    emac877 Member Posts: 688

    Brutersmom - I am so sorry about your knee. I had an ACL replacement years ago and have had knee issues a lot, mostly arthritis, nothing surgical. It's just brutal to be dealing with frustrations and have to deal with a meniscus. I can see why your surgeon would probably hesitate. I do think the idea of adding the knee to palliative services is a good one. Maybe they can run interference with that for you and come up with something that will help if surgery isn't an option.

    AJ - I agree, they may take the wait and see approach since if I remember right, you are fairly new to your current treatment (?) I am familiar with reading reports and still find them challenging to interpret, especially since we don't have privy to the images so we can see what the report is talking about. I love that I get the info quickly but sometimes when I have concerns or questions waiting for my MO is the hardest part.

  • AJ
    AJ Member Posts: 261

    @emac877 , thanks for the reply. You’re probably right that it will be a wait and see approach. Yes, I’m fairly new to treatment and have had good overall results from Verzenio and Letrazole. I wish I didn’t have to wait to see what my oncologist will say. Next time I’ll try to schedule my scan and Dr appointment closer together. I’m getting tumor markers done next week so we’ll have more information then

  • AJ
    AJ Member Posts: 261

    My pcp told me to use a steroid inhaler for the inflammation and attributed it to my asthma, which has been super mild previously. It really does help with my breathing

  • irishlove
    irishlove Member Posts: 574

    @brutersmom Oh I remember now you are from Reading. So am I. My brother lives in Mohnton. Are you near Maple Grove area (if I recall)? I had hoped to come home for Christmas, just in case. But I'm in FL and it doesn't look like I will be well enough to make that long trip. I am 67, feel 167. lol. My grandmother on father's side lived to be 99. Her Mom, 92. Other side, no such longevity. Filled with b.c.. I miss the old Reading. I grew up in East Reading, moved to West Lawn and graduated from Wilson. 50th class reunion coming up in Sept. and can't make that either. York is a beautiful town. Always traveled thru and stopped a few times on our way home. Thanks for responding and wishing you a peaceful, beautiful day.

  • brutersmom
    brutersmom Member Posts: 948
    edited August 2023

    Irishlove. Yes I remember we do have that Reading/Mohnton name connection. I went to the Italian Festival in Temple today. Tony Farina was entertaining and some friends are Tony Groupies and food lovers. I put KT tape on my knee yesterday and when I got up this morning about 80% of the pain was gone. I don't know what it does but I can't believe I didn't do this sooner.

  • brutersmom
    brutersmom Member Posts: 948

    Emac877. My oncologist was funny on his last visit. I see him every 4 weeks. I told him I was on vacation the week I would normally see him, have my labs, have my scan, and start Ibrance. He told me he is not ruining any of my patients vacation if it can be avoided it. He told me to do the labs when I get back. Start Ibrance some time that week. Scheduled my cat scan for the week of my return and see him the following week. Hopefully nothing new shows up because I to have to wait a week to see him.

  • brutersmom
    brutersmom Member Posts: 948

    I have a question for those of you with cancer to the lung. I am on vacation this week at the beach. Today was very hazy and humid. I find that I get short of breath really quickly in this humid air. More then I do at home. When I am in AC I am fine. Has this happened to anyone else.

  • AJ
    AJ Member Posts: 261

    @brutersmom , the smokey air here in the PNW is making my lung issues worse. Since I started Verzenio there has been lung inflammation on my scans and my PCP said it was asthma. The mets are not growing so oncologist isn’t concerned.

  • brutersmom
    brutersmom Member Posts: 948
    edited August 2023

    I want through that in June in south Eastern PA. The smoke was awful. Today reminded me of that but is wasn't smoke it was moisture off the ocean. Very hazy and humid.

  • emac877
    emac877 Member Posts: 688

    I agree with AJ, the smoke here in the PNW has been awful. Since starting Piqray and weekly Taxol my breathing has been normal and I am off oxygen but if I go outside I close right back up depending on the AQI. We've been pretty dry in southern Oregon so I can't speak to humidity outside yet but I do notice if I don't leave the door open in the bathroom and it gets too humid my breathing is not as easy. I do best in AC right now. That may not be the best of comparison. I wasn't able to go to the coast as planned earlier this week because it would have been during the days the Taxol hits the hardest and I didn't feel I would have enjoyed it as much so we postponed until I'm done in November.

  • brutersmom
    brutersmom Member Posts: 948

    I am trying to understand my cat scans. In my opinion they all read differently. I have an appointment next week and I am trying to put together some good questions. Can any one help are they all the same just worded differently or are the discussing different things. I can't tell if I am improving or new things are happening because they are all worded differently. See the attachments. Thank you.

  • cookie54
    cookie54 Member Posts: 825

    Hey there , So it seems to me like the small 5mm nodule and the fissure nodule in the left upper lobe were not seen on the previous. The right lung seems to have made a nice recovery. There were some abnormalities in the left lung previously but by description seems to have been lower than what they are seeing now. Assuming that has all cleared since it is not mentioned.

    So yes you're right in some regards they do read differently but for a good reason with resolution. Sure they will keep and eye on the left upper lobe and compare to your next CT. Obviously not a doctor over here but do have CT experience. Let's see what the MO thinks at this point I highly doubt it's a game changer. Fingers crossed for stability on next scan.

  • brutersmom
    brutersmom Member Posts: 948

    Cookie54 what is weird is told in January I was told that everything referenced the right lung. The scar tissue and pleural thickening would always be there. And my left lung was clear. I can feel that my right lung feels tight compared to my left when I work out. It expands differently. In 2020 I had a 4 mm pleural nodual in the left lung. I suspect that is the same one. I do hope my oncologist reviews the report. Everything is confusing to me and ussualy I have enough knowledge with the help of Google to sort things out. Not this time

  • moderators
    moderators Posts: 8,536

    sending you hugs @brutersmom and hope that you can talk soon with your oncologist to get a better understanding. It's just too difficult without their professional read and clarification.

  • brutersmom
    brutersmom Member Posts: 948
    edited August 2023

    Moderators here is what I am thinking the cancer is in my right lung and pleura. I was told there was some permanent damage. Nothing is referenced about the right lung. Everything is about the left lung. I am beginning to think I need to call them tomorrow and have them review their report. Part of me thinks they read the wrong ct scan. I had it done an hour later then my scheduled time because my veins were totally uncooperative for my contrast and I ended up being scanned at 3:00 instead or 2:00.

  • cookie54
    cookie54 Member Posts: 825

    @brutersmom I understand, it can be much to decipher without your MO's opinion. I'm sure your MO will read your report thoroughly and if they feel comfortable looking at the images can pull it up for you also.

  • brutersmom
    brutersmom Member Posts: 948

    Cookie54. The more I think about this scan I feel like there is something wrong with the report. I understand the first 2 scans. This was supposed to be a comparison scan. All the initial cancer was in might right lung. The left was clear. There is no reference to the right lung. Some of the things identified will always be there I was told. I was an hour late getting my scan done due to my uncooperative veins. I feel they either read the wrong scan or he rushed through and did not really compare anything. I am going to call them tomorrow and ask that they double check their finding. I am not saying they are work I am saying the review my be incomplete.

  • emac877
    emac877 Member Posts: 688

    Brutersmom - I agree with Cookie54. It does appear the left lung had changes and also the reports are confusing to compare with one another. I hope your MO can add some clarity for you. Just based on my recent experience if there is pleural involvement I was told that it won't show on a CT you would need to have a CTA (CT angiogram). The difference being how fast the pictures are taken. Please let us know what you find out. I'm here for support.

  • sunshine99
    sunshine99 Member Posts: 2,723

    emac, the CT angiogram sounds painful! I'll have to look that one up.

  • brutersmom
    brutersmom Member Posts: 948

    Emac877. Thanks for the feed back. Besides dealing with cancer I am very anxious to have knee replacement surgery done. While many of us struggle with pain form cancer I struggle with tension, muscle, swelling and bakers cysts that break in my left knee. It is always there to some degree. Some days it is a 3 or 4. Other days it is more like 6-7. I have to be NEAD before the surgeon will even discuss it with me. Then there is the issue of scarring noted on one report. Incomplete reports like this don't help my frustration.

  • brutersmom
    brutersmom Member Posts: 948

    Sunshine99. I thing that that means they use contrast. All mine were done with contrast.

  • sunshine99
    sunshine99 Member Posts: 2,723

    brutersmom, thank you. All of my CTs have been with and without contrast. Glad to know the angio-thing doesn't involve a line up my femoral artery like I was picturing.

  • brutersmom
    brutersmom Member Posts: 948

    They did use a vein in the middle of the arm. My veins suck. First on blew and I have a huge bruise.

  • cookie54
    cookie54 Member Posts: 825

    Hey ladies a CTA is a CT Angiography the difference in a CT with contrast and a CTA is the timing and the rate at which the contrast is put through your IV. A CTA needs to be put in at a fast rate because the contrast needs to be caught in specific arteries. For example for a PE( pulmonary embolism study) It is timed so that the contrast is very "bright" in the main pulmonary artery and other small branches. If the timing is off the correct arteries are not opacified as they should be for a quality scan/diagnosis. So no pain is involved you may just feel more pressure in your arm being the contrast is going trough very fast as opposed to a regular CT.

    brutersmom If your MO feels the same as you do about report and wants clarification they should definitely return your MO's call. Keep us posted, fingers crossed for your appointment.