How are people with liver mets doing?
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Shetland why did you take off time during the Holidays? Did i miss something?
Kimberly thank you so much for keeping Dani in mind, she also bought a very expensive European hair wig, but she loves it. Even when she was not on hard chemo, her hair never really grew back, she was brunette with straight hair, her hair grew back curlish redish. She was so young the first time around, 25yrs old, when she told me she's shaving her hair it was so hard.
Like Zar said, and everyone knows, hair is our identity, it's one more thing you lose control over, it's definitely a reminder. It's a very important factor. Of course you miss it. But Zar weren't you now on those chemos? Could not that have been the reason for you to have the hair thinning, I know that this Onco when he put her on this tx he said he will try to keep the dose levels down, and her hair should not really fall out, but there would be some thinning (from the thin). And she also has bald spots due to rads.
She almost always has her hair covered with some kind of Gizmo, people always ask her where she got this hat or that, you know more like a beanie, she also got bangs separately and a wig like with a halo type and puts a beanie on top and voila she has another look. She used to customize it for people, pompoms and whatnot, she was selling it at one of the Centers, but then she could not control the tx schedules, and she said they could not count on her any longer, she packed it all up and called me, and I ran over to pick it up to give away so she should not have to look at it and feel bad. Zar when are you traveling for the rads to start?
JFL so glad you got things going.
Husband it's truly beyond. All this adds up to pure negligence. It's very convenient when the patient knows what they need and are able to articulate. She is a lucky and smart gal. Guys, this is what just happened to my aunt, she is 90yrs old, kinda Alzheimer's not too bad, she is a rehab/nursing home place because she fell broke her femur, had surgery but needs full time care. Anyway she has a feeding tube for years because she was not eating. Nurse (not aide) comes into the room and tells her she will be fed(in other words just hooking up the bottles and in it goes), my aunt said she is not in the mood, nurse says ok and leaves. My aunt has a private aide 24/7, that aide called my sis right away and when my sis called adm and told him that she will make so much noise the place will rattle. In no time she was being fed. BUT if she were to be alone, the rest you all know. Btw, it's in one of the better places!!
MJH oh that mutation line PRECIOUS! I agree they would not change, they would be annoyed.
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Momall, I don't know if these methods work but I have been trying them. I researched and one thing it said was to exercise at least 3 times a week for about 20mins. It also said that papaya leaf and pomegranate could bring platelets up, so I bought this papaya leaf extract that you mix with water or juice. The taste was horrendous so I could not do that. I also take 4 grams of Turkey Tail. When I was doing the trial and your blood counts were not acceptable, they would have you walk the halls of the hospital. I was doing this for my platelets, but last week I walked 15 mins briskly up and down the hallways and still got a 50 on platelets. So that method is not the best. The biggest thing is to get the lymph fluid flowing. If I find anything else I will let you know.
I will probably be on one of those chemo's that you lose your hair in the near future. I definitely want a natural hair wig, where did Dani get hers and does it bother her head to wear it?
Robin
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JFL-lovely news that you are back on track. What a good feeling.
Robin- I am not aware of spleen issues with MBC, but certainly if one was anemic at all, it might be trying to pump out red blood cells and become enlarged? So sorry to know you are enduring this troublesome pain. It takes the wind out your sails, I hate it. I have had some pain also in the upper right abdomen and ribs. it seems to come and go. Hope it abates, STAT.
Kaylynne-hate also that you are enduring this. Thinking of you now and sending another "STAT" order for pain abatement. I have visited OKC, but know nothing about the medical climate there. I loved the Cowboy Museum and the Crystal Garden?
Sending love to you and all of my MBC sisters. May the force be with you. MJH
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Have any of you ladies stopped treatment for holidays? My onc suggested today that I could do this with Xeloda because ofmy feet. I want to be able to walk but I do t want to give Cancer a holiday either. Man I need to do some serious reading here so far behind . Such a fast moving thread.
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My wife took breaks of 3 weeks at times when side effects got bad, and she is fortunate that it had no detrimental effect. At least as measured by tumor markers, the drug seems to keep working even during the third week off, as tumor markers continued to fall between the end of the second week off and the end of the third week off.
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MJH, thanks for that pain abatement stat!!! MO said it was not spleen, but did a chest CT today. I will get results tmrw. In other bad health news, my platelets were 27. So they sent me over to the hospital for platelets. I need to catch some kind of break.
I second your sending love to all the MBC sisters 💕 ❤️ love
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Yikes rpoole. I am not happy about those platelet numbers. Keep us posted on platelets and scans. We're waiting with you ..
>Z<
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Robin, I hope the CT provides some answers to your abdominal symptoms. What does your MO think is causing the continued low platelets? Is it the treatment alone causing it? It sounds like your spleen question is no longer applicable. I do recall someone on here mentioning a while back that their MO said the spleen would kick into gear sometimes in the event of bone marrow mets when the marrow was compromised to where it couldn’t generate adequate blood supply in its own.
Chiming in to join the forces in sending love to all of my lovely sisters. It has been a rough week or two with losses on these boards. Sending positive thoughts, peace and healing to all
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JFL, My MO thinks its the Carbo hitting the platelets so hard. I had the same thing happen last fall when I was on Carbo. The sad thing is carbo was giving me a full response, and now I have to stop at due to platelets. It looks like Abraxane is next. My ammo said the pain is from the disease And it was time to hit it with something a lot stronger. I’m freaking out about losing my hair and I’m contemplating the caps but it just depends on what my dose schedule is. I could not go through the cap Process on a weekly basis! Ug
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I had my PET yesterday. BUT I had a wreck on the way there. I was on the highway in stop a go traffic for 45 minutes, then the car in front of me stopped and I didn't have time to stop. I wasn't going fast but it was enough force to scrunch the front of my car. It didn't do much to his, but mine is not drivable and is probably a total loss. I just want to cry. I wish my husband was here to help me figure out what to do.
Another day in the life. I get results of PET on Thursday. Praying for good ones.
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According to my wife's oncologists, the spleen acts as a storage depot for platelets, and if it is enlarged, the platelet count will be artificially low. Combined with anything that further suppresses platelet production, you wind up with really low platelet counts. The same fluid pressure that caused my wife to get ascites, also caused her spleen to be permanently enlarged.
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Grannax, so sorry to hear! How scary. Hope good scan results come to cheer you!
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Thank you so much for responding Husband😊. I don’t comment here much because this seems to me to be a very smart bunch of ladies and I’m not familiar with all the cancer jargon I must admit. I feel like I need to take a course on genes and various cancer treatments to be viable here. As with all thingswe avoid but is staring us in the face I am learning regardless. Thanks ladies and gentlemen☺️
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Hugs Grannax. I am so sorry about your car and especially about the stress it is causing you.
Husband - very interesting.
>Z<
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Grannax-so sorry about your wreck. Life is so very stressful. Praying you get great results tomorrow
rpoole-I hate to hear that you are still having issue with your platelets. We all understand the hair issue. It is not a small matter. I lost my hair 3 times on chemo and wish with the last chemo that I had tried the cold caps. Some people have great success with them.
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Grannax - glad you are all right! And you still got the PET done.
You will need a rental if you don't have a second car to drive. And insurance will give you a check if it is a loss. So you will want to decide what auto to purchase. Do you want an auto payment or not is your first decision. If you need help with more decisions, pm some of us, we who have had experiences like this can talk you through.
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Husband, very interesting and make a lot of sense. My PET scan says spleen unremarkable, so my MO says its not the spleen. Do you know of any other tests I could have done to make sure its working right?
Grannax2, Sorry to hear about your car accident, the only thing that matters is that you are ok. Praying for great results tomorrow.
BabyRuth, I have been going back and forth about doing the caps. UGHHH They do work because I used them in 2011 with early stage bc. It really is a production with all there is to do. My center does not have the freezer, so I would have to get dry ice and roll in my cooler. I just don't know if I can handle the process every week for 3 weeks and then 1 off week.
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rpoole - i can see going back and forth on cold caps. i don't know which way i would go. hugs and support is all i can provide.
>Z<
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After weeks of dealing with lung and breathing issues, a CT scan confirmed pneumonitis and inflammatory disease in my lungs. My MO gave me 2 different antibiotics and a 5 day dose of prednisone. Pneumonitis is a symptom of Oliparib....the trial I was on. And that is when all the problems started. That trial really did a doozie on me and my disease.
Has anyone experience pneumonitis??
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Rpoole: My wife's spleen was diagnosed as enlarged based on the several MRI's that she has had. They give approximate dimensions for it and call it enlarged. Increased size equals more hoarding of platelets, is all that I know of. If your spleen isn't enlarged, then I would say its purely a platelet production issue. I believe platelets are formed in the bone marrow.
My wife tried papaya leaf extract, as it has helped people with low platelets in certain circumstances, but it did nothing for her. No point her continuing to take it if it did no good, and I fear that it has potential to interfere with drugs that are working.
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Oh Geesh. Haven't read in a few days and so much happening.
Grannax, there is simply quite enough to think about without the trauma and nuisance of an accident. Thinking of you.
Robin, so extremely sorry to hear of this set back. I do pray it clears up soon and you are able to resume treatment. Has your onc talked at all about changing your carbo treatment schedule? I finally landed platelet stability with 2 weeks on, 2 weeks off. We had also discussed 1 on, 1 off, 1 on, 1 off...28 day cycle with treatment days 1 and 15. Fully understand if you're ready to move on but hate to leave what may be working. Oh, that trial. So much wish we had a crystal ball and knew what to try and what to skip!
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Kaylynne, I checked my liver measurements for you. 27.2 cm for me. I too am having a lot of pain to contend with. You describe it well. I'd love some fetal position crying but that does hurt. I can only sleep on my back. I have a wedge pillow so I use it about half the night for a little position variety. I spoke to my onc more about pain management. I was doing oxycodone every 4 hours round the clock but the past few days I've wanted more at 3 hours. She rx slow release morphine which I haven't tried yet. She also okayed use of copaipa oil or CBD oil along with the oxycodone or morphine. I've decided to add the copaipa to the oxycodone first. Should have it tomorrow. The pharmacy hand out for morphine scared the bajesus out of me. Don't be afraid to talk pain control. I am glad I did and hope something else helps a bit more.
As for the IMMU trial, it states that no single tumor can have a dimension that exceeds 7 cm. I am at 6 cm or so they think. Still hard to accurately measure. There was a line that said some tumors over 7cm may be considered if approved by the medical monitor. So I think you have hope. Plus a good chemo should be able to get the tiny shrinkage you need to be eligible. I'm still considering the trial if we can get reds to stabilize.
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So the average adult liver is 15 cm and varies by gender and body size. I am the tiniest female I know. First class scrawny at 5'4, 100 pounds pre-cancer. I know I'm in deep here but I can't help but be in awe of my liver. What a strong liver I have to be able to sustain so much and still go functioning on! Keep it up not so wee liver. You are really hanging in there.
Going to drink my yummy Carnation now. I began nutritional shakes about a week ago as I too am having trouble eating enough. Can't say I love them but oh well.
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I love your post, Kaayborg. I tried to thank my body every day for hanging in there with me. It's not getting an easy ride, but it gets up every morning and muddles along. I haven't always been so appreciative of it, living much more in the thinking world, but I'm more aware of the physical dimension now and I'm trying to pay attention and respond with gratitude.
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Grannax, so sorry about the accident. It really is too much to deal with on top of everything else.
Robin, must be so frustrating that you can't do carbo since it has worked so well for you. I have been using cold caps with Abraxane for 5 months now. I totally understand being on the fence with caps. I am on the every 3 week Abraxane cycle (much stronger dose/highest dose they give, less often). Most people do weekly - two or three weeks on/one week off at a low dose. My MO said that for people who do weekly, only 50% lose their hair. However, it seems like everyone on weekly on the Abraxane thread lost their hair without question. With every 3 weeks, the hair will be gone after the first cycle without question. There is no way I could do weekly cold caps weekly. LALady is a champ for doing that for 5 months!!!
Even though I plan to continue with cold caps and attempt to preserve the hair I can, I had to bite the bullet and buy a wig two nights ago. The hair loss was manageable but has recently tipped over the line. I am waiting for the wig to be ready following customization - hopefully at beginning of next week.
Kaayborg, your liver is certainly the "Little Engine that Could"! It is amazing how our livers can hold up. Livers are not complainers, that is for sure.
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Husband, I also tried the papaya leaf extract and it did nothing. Thanks for all you input.
Kaayborg, My MO did change up the dosage by giving me low dose weekly. TM's fell the first 2 weeks, and last week went up 100 points. I told my MO the TM rise is probable due to all the inflammation in my lungs. She told me my disease is serious and I need something harsher. I had a CT of the chest yesterday due to my breathing issues and part of the liver got in the report. The scan basically covered the 3 weeks on carbo and the off week. There was no progression, but no regression. She says I can always go back to it. So I am moving on to abraxane and not happy about it at all. I struggling with doing cold caps or just get a nice wig. This is going to crush me, but I know my MO has this one right......need the big guns. She also suggested Halaven, but then said I couldn't do it now bc I have never done a taxane. How are the side effects on Halaven?
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Kaayborg - I am very impressed with your liver. And you. I hope my liver is as tough.
>Z<
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Wendy3, you asked about time off Xeloda for a holiday. Yes, for the first time in about 8 months on X, I am about to get 2 weeks off instead of 1, so I can be at my best for a special dance performance. My onc further encouraged me to take the longer bread as it would be good to let my skin have some extra healing time. She is all about quality of life. Husband11, thank you for telling us that your wife's TMs did not suffer for the break. That helps me feel pretty good about the break. Actually I'm looking forward to the break the way normal people look forward to a tropical vacation!
Robin, yowza, pneumonitis from the trial drug. So sorry. I think there was someone on the Afinitor thread that got pneumonitis from that drug. I'm glad they figured out what was going on, so you can get it treated. What a lousy ride you've been having. Abraxane is a good drug. And carbo will still be in your arsenal for later. I understand weighing the requirements of cold capping against losing hair. Which way would cause you less pain and annoyance? I felt I could not deal with capping during Taxol, and I was able to make the best of it with an occasional wig and a nice collection of caps and scarves. I figured I might as well have fun accessorizing. But don't get me wrong; when my hairdresser casually brought up that time later, my tears surprised him.
Grannax, I really think we should be exempt from things like car accidents, with all we deal with. Please ask people around you, or even online as Bluebird suggests, to help you deal with the aftermath. Sending you a special hug.
Husband11, you mentioned papaya leaf extract interfering with some drugs. Do you know anything about papaya juice or fresh papaya? It is currently on my good list because it has digestive enzymes, and I figure good gut health will help my immune system.
Kaayborg, that is some serious pain and pain meds. Sending all good thoughts for your pain to go away. Maybe send someone to the whole foods store for some high-quality meal drinks? I agree, amazing liver, and I feel the same way about mine. Snowball, I like the way you have framed things. Instead of thinking our bodies have betrayed us, to think of how they continue to try. I go to yoga and many of the poses are adapted to my various issues, but I still walk out of there feeling pretty strong and healthy in spite of everything.
I read here that many of you are thinking about how many liver lesions and what size. Wow, I realized that in spite of my reputation for wanting details, I have never thought too much about the count or the size of lesions. Maybe that's because the lesions started out so scattered and numerous. I mean, when I was first diagnosed, my liver was just full of tumors. Ok, I will look at the first PET-CT report from 2014... "Diffuse involvement of both lobes of the liver with intensely avid metastases....multiple..." The largest one was about 5x10 centimeters. Yikes. But since I had complete metabolic response to Taxol, I learned to just focus on the SUV uptake level on PET and the general impression from the radiologist. In my case, with such diffuse involvement, local treatment is off the table except for Y90, and I have not been looking into any trials where size of lesions matter. So what I am getting at is the size and number may not matter as much as finding the right treatment.
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MJH- Oklahoma City has changed so much in the last few years with The Thunder based here. It the Myriad Gardens and the Crystal Bridge you are thinking of and it is quite lovely. It's a large enough city to find diverse things to do but small enough that I know lots of people without them knowing all my business. Where do you live?
Robin-Holy crap to having pneumonitis..damn sister you do need a break. I hope the antibiotics work quickly.
Kaayborg-27.2 cm!!! That has to be some kind of record for a wee person like yourself. I am 5'3" and the last time I weighed 100 pounds was when I was a senior in high school. Such a tiny thing and so beautiful to boot. When you onc recommended CBD oil, is this with or without the THC? I have CBD oil manufactured by Cantech but it has no THC and has had little effect on my pain or mood or anything else for that matter. What do you know about it? Can it only be purchased in states with approved medical marajuana laws? I've been drinking Boost and it is yummy especially the chocolate.
Snowfall-Beautiful words of gratitude . Our bodies are amazing.
I am still working full-time and the pain meds make me sleepy so that is why I rarely take anything. I have a live in boyfriend who has been amazing but I can't get insurance through his work and it's terribly expensive anyway. I looked into disability and that dollar figure sucked big time. My life insurance is through work too. Who is still working? Who isn't working and how do you manage? Is anybody in my boat and if so, what is your plan?
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Kay - I really have no idea how one would work through MBC. I do no. I can't imagine the strength you have. I am so grateful your boyfriend is supportive. All I can say is that you have a are logical and clear thinker and I believe that you will get you to the right balance of difficult options ... for you.
>Z<
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