mets to lung
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Novagirl, I don't have Lymphangitic carcinomatosis but just wanted to say I'm sorry you're going through this.
I have read that the issue with resecting this presentation is much less likely to work than a solid tumor. Even though it appears to be localized to one area, I understood that it's possible the whole lung affected and just not detectable in other areas? That's how I was taught it in a pathology class. I think that's why a systemic treatment would be the best option but I think you should obviously gather all the info you can.
Maybe you can get some second opinions? I hope your team comes up with a treatment plan you are confident with.
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You ladies are the best! This site has the most helpful people.
Figtree, I was thinking about wedge resection or VATS. I did research lobectomy, it is MAJOR surgery. I would do it if they thought it would knock out this LC. Do you regret having it done? That’s great your MO wanted to be aggressive. I didn’t know a thoracic surgeon performed these.
I had SBRT at Hopkins in February this year. They have one machine...I felt like I was pleading my case to have L2 zapped. I was able to get it because when I had radiation right after MBC diagnosis initially-they inadvertently radiated my bowels to get to my lumbar spine. I was so messed up with dehydration and diarrhea for 6 weeks. My bowels have all sorts of issues now because of it...verzenio constipated me so badly it was inducing vomiting. I was thinking I’d have diarrhea like everyone else.
I like your idea of doing SBRT. If Hopkins doesn’t agree I can go somewhere else. I am worried about time. I see my MO tomorrow, I will discuss all of these options with him.
Dee, thank you for the big hugs. I gladly received them. I was coasting along on Ibrance then thought I had finally settled into verzenio and this blind sided me. It’s so rare and it’s hard to find people that have had it.
I read the same case report on the eribulin.
Thank you both! I’ll keep you posted on what MO says and what we do moving forward.
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I had the VATS procedure two Fridays ago. They also decided to replace my Pleurx with a new one in case the VATS procedure didn't work.
Two weeks out it looks like the VATS procedure was "successful" and the linings of my pleura reattached. Happy about that outcome for sure. However, I had a ton of pain after the procedure and have a ton of pain now. I'm weak and can barely get out of bed though lying in bed for so long gives me a backache. So there's no comfortable position for me. I am scheduled to have the new Pleurx removed on Wednesday and hopefully, that is the culprit of the pain. No way to know for sure. I'm on Ibuprofen, Gabapentin and Oxycodone and it barely scratches the surface of the pain. Had an x-ray and bloodwork two days ago and all looked good. Wednesday seems a century away and the removal will likely cause more pain in the short term.
Any ideas or experiences to share? I'm so miserable and sad. Can't stop crying.
Hugs to you all, Susan
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Susan,
I’m so sorry to hear about your pain. I had no idea you were going through this. Unfortunately I have no suggestions. I recall the pain from them over draining my lung like it was yesterday and can only imagine how hard it is for you to cope with. Sending virtual hugs.
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Susan,
No advice to offer but just wanted to say that I'm thinking of you. So sorry for your pain, and I hope the procedure on Wednesday helps to clear it up. Hang in there. You are a fighter for sure.
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Susan,
Intractable pain is a horror. I join you in wishing for Wednesday's speedy arrival.
By your side,
Tina
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Susan, I'm glad your VATS procedure was successful but so sorry to hear of your pain.
Are you home or in hospital? I'm wondering if you can get a referral to anesthesia for a regional nerve block while this heals. They're often placed during and post surgery and they reduce the requirement for opiates. They're being increasingly used here.
Or maybe an urgent referral to palliative medicine - they're really the best at managing pain. Your mobility is super important so one way to think about this is that you need to get pain managed so you can get up because not being up is extremely dangerous.I hope your team can put something together to help you asap! Meanwhile sending lots of hugs
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Oh Susan, it sounds horrible and I am so sorry you are going thru this. I don't have any knowledge to share but I am thinking of you and sending you an air hug.
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Susan, I’m so sorry you are in so much pain. I totally agree with Moth at a nerve block is the way to go. When I had VATS to remove a lobe of my lung, the surgeon did nerve block along the nerves on my ribs during the surgery and it helped A Lot. But maybe your pain is caused/exacerbated by the new pleurx placement. If that’s the case I wish Wednesday is already here for you. Sending calming thoughts to you...
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You are all so wonderful and kind to get back to me with comforting words. I am so grateful to be on this board. I had one friend in my support group who was dealing with a Pleurx but she invoked her right to die last week. She was only 32 and such a kind and strong woman. Her death has made all of this harder to take.
I will ask about a nerve block if the pain doesn't subside after the Pleurx removal. Great idea. How long does it last? I spoke to my Palliative Care doctor today but he didn't mention a nerve block. He did clarify that I need to take Gabapentin regularly but can take Oxycodone as needed. No one explained any of this to me when I was prescribed the drugs. Spent most of today at the Cancer Acute Center at UCSF getting tests and a brain MRI done. Last Friday my Neutrophils (usually around 1.5. Went up to 8.35) and WBC (usually low around 2.9. Went up to 9.2) jumped so I was worried I had some kind of infection. I also have a droopy right eye. They were really worried about the droopy eye but I was thinking it just needed a warm compress. Brain MRI looked great so they are less worried about that.
Tomorrow is already Wednesday so I'm very hopeful but at the same time worried about being disappointed.
figtree, The pain of removing a lobe has to be many magnitudes worse than what I'm experiencing. So glad the nerve blockers helped.
Big hugs and love, Susan
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Has this ever happened to you?
My MO's office just called and said that due to shortages they are unable to get their shipment of Abraxane and could I come in earlier this week to discuss alternative treatment options.
What the........?
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Wow GR4C1E. That would really make me lose my #%&%. While I understand these things happen, it's worrisome as there are some considerations regarding timing and sequencing of treatments. As an example, I just had a discussion with my MO on Friday about which drug to move to and he has me on Navelbine. I think his preference would have been Halaven but he said we can do Navelbine then Halaven but not the other way around. Not really clear why...
I would suggest you ask them if this will in any way negatively impact access to any drugs going forward. If not, it's likely okay but I would want to be sure first. Sorry you are having to face this.
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I'm stuck in the whole cancer panic cycle right now, and the self destructive anxiety loop playing in my brain keeps asking me "how bad is this gonna get?" I'm trying to shut it off but having internet access at work is sending me down the research rabbit hole! AAARRGH!!
PLUS, my appointment to discuss my "options" isn't until Wednesday, so that just makes it worse!
I just have to keep reminding myself that there ARE options and there are other taxanes out there.
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Sorry. I don't think I was particularly helpful! You're right, there are other taxanes. I started out on Taxol which was very tolerable. Sending hugs...
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GR4C1E, wow I haven't heard of an abraxane shortage. can you have taxol or are you super allergic?
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GR4C1E,
If I were you, I would call back immediately and ask for an appointment tomorrow. Tell them that this news of switching is causing severe anxiety.
I would also ask if they were able to negotiate with another clinic to see if they could get some in. Maybe they could arrange to send you to a nearby clinic that has the drug. You never know. FYI- I ended up getting home care for my IVIG when my particular drug was in shortage at my cancer clinicand the home care had a different supplier.
Are you taking both Gemzar and abraxane together? When was your last scan? Switching to a different/less effective taxane could be ok or could bring problems. I would also ask for at least 2 options with pros/cons and data to support the recommendation. Abraxane has lots of data saying it is a top taxane choice for MBC.
This stinks that it is happening, but take the reigns as best as you can. Prayers that it all works out. 🙏🏻 Let us know
Dee
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Moth,
I had Taxotere back in 2011 - 2012 and I tolerated it pretty well. I struggled with the side effects of the pre-chemo Decadron dose pack and they finally stopped prescribing it because the steroid crash was brutal for me, and I did okay without it. Of course back then, the Taxotere (+ Cytoxin) was administered prophylactically post bilateral mastectomy, so it was a short duration - probably once every couple of weeks for about 4 months.
I'm definitely freaking out over the change. I just broke up with my previous MO (one change) and two Abraxane treatments in - ANOTHER CHANGE! I was hoping for stability, both in my MO and my treatment. I have an awesome MO now, so his office called today to let me know what was going on. If I were still with the other MO they would have told me when I showed up for treatment! So this is definitely a better situation, but I'm still stressing out.
Once I get past my next infusion - whatever it may be - I'm sure I'll be fine. (I hope - maybe - I think)
I don't know if the shortage is world wide, or even country wide. We've been having all sorts of issues in the US getting ships into ports as well as transportation issues on the ground because of flooding and tornado damage. Not to mention that a few neighboring counties in Pennsylvania where I live are still awaitng FEMA assistance. On average, we have 12 tornadoes a year. This year, we've had 20. It could be a situational shortage because of where I live.
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Gracie, I can relate to the cancer panic cycle. I take the generic of Xeloda, capecitabine. For awhile I was paying about $300 a month for it through a mail order pharmacy. Then I found a coupon at Good Rx and was able to get it locally for about $50 for several months. So I dropped the prescription off last Friday. They said they had to order it and it would be in today. But today Kroger pharm said they can't get it distributed to them. It really pisses me off. I figure Krog's can't make money off it so it's not worth their trouble. Or is there a shortage. I made a few calls to the cancer center and a nurse is checking in to it. But I'll probably have to go back to paying hundreds of dollars a month for it. Other people have said they only pay a few dollars to get it. The price discrepancy is beyond irritating. Nothing ever seems to go smoothly for very long.
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AlabamaDee,
I'm off Gemzar because it failed miserably and I found an new MO who said what I was thinking: "why did they take you off Abraxane if it was working?" and they put me right back on and Abraxane regimen. So, now here I am.
My last scan was two weeks ago after the Gemzar failure which lead to significant cancer regrowth, coughing and breathing issues and a fractured rib. Ouch.
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Bristol Myers Squibb doesn't have a press release on their website so I don't know how accurate this information is.
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ugh I just checked the Canadian drug shortage website & abraxane is short here as well due to manufacture delay. My next dose is in just over 2 weeks.
I hope we can get our meds!!
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I was really hoping it was a transportation and logistics issue. I guess we'll have to wait and see how this plays out. I have an appointment tomorrow to speak with my MO about this. I'll follow up and let you know what he suggests.
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Update: My MO says it may be a month or more before supplies of Abraxane become available. I start Taxotere next week while I wait.
This really sucks.
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Gracie- you have a plan so somewhat less anxiety I hope. It is so frustrating when outside forces limit the treatments we need. Cheering you on and believing taxotere will kill the cancer
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AlambamaDee-
Yeah, I'm not happy about it but I have a plan. My MO was actually so stressed out it made me feel better! He's had a horrible couple of days rescheduling patients. Thanks for the cheers!
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Would like to fly to see my parents in Honolulu but I'm worried that the lower pressure during the flight might compromise my breathing. The last time I had plans to go, my MO said, "Absolutely not." So I had to cancel the trip.
Has anyone used a Portable Concentrator to fly or for other reasons? I don't normally use oxygen and my saturation is 97 without a mask. However, I have some trouble breathing through a mask and will have to wear one for the entire 5-7 hour flight. I'm also concerned that I will become anxious and panic if I feel like I can't breathe after take-off since it will be hours until we will be able to deboard. The units are very expensive. A good, light one with the battery capacity for such a long flight is $2,495. I was looking at a Caire FreeStyle Comfort model.
My Dad turns 89 next month and I haven't seen my family since the COVID lockdown. I worry that he will become sick or even die and I won't be able to see him before then so it's important to me that I be able to go.
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Susan- Wow that’s a lot to consider:device cost, anxiety, desire to see parents. I don’t have experience with a concentrator, but I would recommend a sit down soon with my MO and get some guidance, maybe a pulmonary consult. Is there a way to get the unit cheaper? Can you rent it?
Let’s face it- we have cancer and we have aging parents. We need to make hard choices about our health. FYI-My dad is 83 and my step mom is in hospice with pancreatic cancer. We went to see them right when the delta variant surged. I had lots of anxiety flying, but it was so important to see them.
Hope it all works out!
Dee
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Susan, the airline possible has an exemption policy for masks - may be worth enquiring.
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Thanks Anotherone. I think this is true but it may not be safe for me to be in the plane without a mask.
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Susan - I feel for you! I have family in Hawaii too plus it's my fave place to be but I get too scared to fly. It's such a long flight. I hope you can find a solution. If you were to get an exception, maybe one of those face shields would help - and an Ativan!
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