How are people with liver mets doing?
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Hi everyone, I've been away for a few weeks but I followed your conversations here and I'm so sad to read some of the lovely ladies left us. I wish them and their families peace.
Nicole is your vertebrae better? Are you no longer in pain? I hope everyone else is doing well. I relate a lot with Kabuki as my mother too was recently diagnosed after 9 years of remission and all of this feels unreal. All our plans for the future suddenly collapsed but I hold on to hope that those future plans will only need modifications and aren't gone forever.
Mom has been on ibrance and letrazole for a month, her mri in early June and late July show stable disease (and she wasn't on any meds at that point!) and her blood work (from today) with liver enzymes, gama GT and LDH is completely normal! Her leukocytes are a little low and her neutrophiles are also below normal values but her oncologist says it's not that bad. Another month before she gets another mri to see if the meds are working. I'm scared.
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Sadie i have my BITES as we call them...when ever I progress I get them all over my arms...do a search on here for BITES...in STAGE 4 you will see pics of my elbows...
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Thanks Grannax for asking about me. I don't know what I posted last. I met with the RO and liver surgeon and they discussed options. Y90 sounds like the one they prefer for me. I just got home from a PET to see if other areas are active (last PET 2 years ago). If other areas active (bones) then we would do systemic treatment change to hit everything. If PET quiet but the liver then they want to do Y90. I am leaning on NOT doing Y90 right now. Due to everything. The risks. I wrote out a pros and cons list. The downtime---my sister on Hospice in a Nursing Home and I am her POA. I am at the Nursing Home every day with her. She is anxious, she is confused and knows she is confused. She is scared. I am not in a good place mentally to handle a procedure right now. My nerves are frayed. I am exhausted physically and mentally and emotionally. Lets just change from Ibrance to a PARP and get it over with. I can take the PARP at home. I will see what the PET says, but I cannot handle much more right now.
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Thanks Nicole. I recall you bites but that' not what this is like. It's a lot of itching and rash. The rash is not consistent but the itching is driving me nuts!
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Sadie's - yes. Dry, intensely itchy skin has been a problem for me - especially the tops of my thighs. No rash. It was worse in the beginning, so I don't know if was a SE that lessened or if it was because my liver mets shrank and my LFTs improved. I'm careful about my soaps and use Nivea in-shower lotion when needed.
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Candy... you sound very overwhelmed about the Y90 and from what I am gathering from all your posts I think that you sound like you definitely should hold off. I would not go into any procedure leaning that much away from wanting it. I can't remember all our chats..but I want to re-iterate that my horrible experience with Y90 is NOT the norm...it's really not..BUT I will say if your tumors are near the colon wall..then YES I too, would be very cautious. I go for my Y90 this Friday...I am a little nervous..but trusting God and my IR that the location is totally different this time and hence the outcome to be as well.
I hope you find peace in these decisons...also I am here if you have any other questions about my experience.
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are u on zelod
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are u on zelod
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are u on zelod
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Thanks Nicole. My RO said upon reviewing my scans that my stomach lies close, and mentioned she would have to be careful not to get the Yttrium in the stomach or it would cause an ulcer. And she mentioned the lower right lung also. My segments targeted are segments 3 and 4, the left liver.
The risks are concerning. As is being off my Eliquis blood thinner, as I had a PE lung blood clot in May. But, mainly it is the emotional stress I am under right now with my sister dying. I just do not feel in a good head space to deal with Y90 and the possible side effects. Anything else to deal with and I think I will crack.
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I am starting Zeloda does anyone have info on side effects. I’m so scared of this drug.? Nausea
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Brixton, there is a thread specific to Xeloda here: https://community.breastcancer.org/forum/8/topics/...
click on the link and read back about 5-10 previous pages and you should be well prepared
Are your mets only in the liver? Can you fill out your profile and change your settings to public so we can see your diagnosis and treatments? It helps to steer you in the correct direction for other threads for support.
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Hi Brixton,
There is a very active thread called All About Xeloda which you should find very helpful. Here's the link: https://community.breastcancer.org/forum/8/topics/772113?page=422#idx_12640
I have been on Xeloda twice and it's a very tolerable drug. There are a few things that need to be managed, the biggest being hand and foot syndrome (peeling, sore feet and hands - this can be managed with creams to keep things moist), but overall most on it find it pretty easy to tolerate. Other than the hand and foot syndrome I had some fatigue but no GI issues to speak of. I'm sure the folks currently on the drug will be able to answer your questions.
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Sadie why did you do X twice?
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I went on it in late 2017, completing 4 cycles but some vague symptoms continued so we switched to Faslodex. It was hard to tell how successful treatments were as it was primarily bone with no change to the pleural effusion (just a small amount at that point). After I failed Faslodex and Verzenio we decided to try Madame X again and it did a brilliant job on my liver mets. I’m now off again after six cycles as my MO did not want me stay on it due to concerns regarding toxicity to my marrow. Suspect I will try it again if (when) things start to stir. Unfortunately experiencing increased twinges in the right flank by my ribs which has me wondering if my hiatus is over… scan in a couple of weeks.
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Candy, trust your instincts. If it’s too much for right now, it can be done later
Husband 11. I’ve had numerous blood transfusions. If my HGB is 8 or lower they give me one unit or two.
LFF. Shared misery on Slow FE. Yuck. I wish there was a different type of pill that would be easier on my system. I just got my labs done so I’ll know later today.
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Grannax, there is something known as an iron infusion, which my wife has had. It is not the same as a blood infusion. It is some form of IV iron, which means you don't have to take oral supplements. It is mainstream medicine, not something from a Naturopath or other alternative practitioner.
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I agree iron infusions make a huge difference. Be careful as there are two that I know of and one my insurance pays for and the other it
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I got my test results. My iron saturation is still only 12%. So, those yucky pills didn’t do anything to help with that.
Thanks for the information Husband 11 and LFF. I’ve never had an iron infusion. I’m going to check with my oncologist and see if that’s what she’ll want to do next.
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Thanks SeeQ. This itching is making me nuts. It’s particularly bad at night. Can’t think what else it could be besides a possible bile duct blockage. Some pain around my liver so I guess it’s wait and see what the scan says in two weeks. It’s always something!
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Sadieservant, can you get some blood work done and see if liver enzymes or bilirubin is on the rise? Can you consult with a pharmacist and see if any antihistamines are compatible with your current treatment? I believe there are some that have some prospect of helping breast cancer treatment. Loratadine and Desloratadine I believe.
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Sadie,
I will step in only to offer a suggestion to help with itching secondary to liver disease. Try Sarna Sensitive Lotion or CeraVe Itch Relief Lotion. The pramoxine in them is an anesthetic which might allow enough relief to let you sleep.
Good luck,
Jane
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Sadiesservant, I logged on especially to reply to your post and saw your PM, so I will PM you. Bottom line, I would not wait for the scan but seek urine and blood tests now. Itching can be a sign of jaundice and for me it appeared before any obvious yellowing. More via PM.
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Grannex- I feel for you. My iron saturation I’m average since Jan is 8, which is where I was 2 weeks ago. Iron infusions really do help, but I would ask your mo if the low iron was due to medication or something else. Dealing with anemia is another thing I am have normalized during my 10 years of treatment. It’s not fun, but is manageable.
Take care of of yourself. Iron and hemoglobin really help with energy levels. Feel better soon.
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I’m back on steroids again. My pneumonitis came back after I stopped the previous course. This time longer dose for longer. I just can’t take the coughing snd not eating anymore. Unfortunately got me steroids are my only option. If the pneumonitis is from the radiation treatment I had to my chest, there is nothing I can do about it. If it’s from my meds I have no other options. Do stoping it ( kadcyla plus Tucatinib) isn’t s possibility. Do steroids it is.
Ugh.
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Thanks for the responses everyone and the really informative PM Shetland. I have an appointment with my GP early next week for something else and will discuss. Going into the weekend so if anything changes drastically I will go to the ER and/or call the cancer agency on Monday morning.
Interestingly, I had liver function tests done at the beginning of August and everything came back normal but I guess, if mets are impacting the bile duct they may not have been big enough at that point. I appreciate the suggestion of antihistamine Husband but apparently it doesn’t help with the itching. They only recommend them before bed to knock you out so that you can sleep. 🙄
Sorry you are having so much trouble with the pneumonitis LFF. Steroids are rough..
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desloratadine does help with itching and hives. I'm on it continuously to ameliorate skin reactions from immunotherapy (I have bad allergies anyway so was on it before but only about 4 months out of the year. Now it's every day). The brand here is Aerius but don't take at night as it is non-drowsy. I can't take it after 12 noon or I don't sleep well.
oh & an aside, desloratadine (& loratadine) are associated with better breast cancer survival. That was a super interesting thing to find out https://www.tandfonline.com/doi/full/10.1080/02841...
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*****Update from here-----
Got a call from my MO today. PET results in. I cannot see them yet on the patient portal, probably show up next week. Anyway, bones quiet. Uptake in the liver (where the tumors are) and also interestingly in my thyroid. I have a thyroid nodule. Biopsied in 2015 and 2016 and benign back then. She said we need to look into this, but not right now.
She wants me to have Y90, but we talked about my sisters' situation.
She is putting me on a PARP, Lynparza, to act as a "bridge", her words. Then, when my family situation eases (sister passes) then she wants me to do the Y90.
I am off Ibrance starting now to raise my counts and we need to do the insurance thing for the new med. The office will be in contact with me about when I am starting Lynparza.
I am ok with this plan.
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Candy- glad you have a plan that is doable and you have peace about it. Yay the bones are quiet. Love on your sister and rest!
LFF- steroids can be awful but helpful. I hope the kick start your body to heal and you can proceed with treatment
SadiesServant- I can’t imagine the torture of the itching and the unknowns. I hope you get some answers soon and relief from the symptoms.
Grannax- that low iron sat stinks but maybe an infusion will perk you up. I remember my iron was low normal before my hip surgery 10 years ago. My surgeon wanted it at the highest so he put me on a special iron tablet. I will try to find out what it was.
Nicole- hope you are home and doing well after y-90.
I just had my first visit with my new grandbaby!
🍼👼🚼 Faye is so precious and tiny(almost 3weeks) we waited our turn to travel to MS. my son and DIL are doing fantastic as 1st time parents. We are staying in a hotel to give them alone time. Just had to brag a little. These milestones are even more precious when you live with cancer.Dee
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Candy - glad to hear no progression to bones and a treatment plan you can live with.
Sadiesservant- I'm glad you're going to follow up sooner, rather than later. It's so hard to know when a seemingly small thing is really a big thing... and so frustrating.
Dee - yay for getting to see the grandbaby!
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