How are people with liver mets doing?
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Grannax2, unfortunately, I did loose my hair with that treatment. It’s now growing back on inbut much thinner then it was before chemo.
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Grannax2...I was on dose dense Taxol initially so unfortunately I did lose my hair, since my switch to weekly Taxol 3 months ago it has started to grow back.
PB
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anewbreath maybe your hair loss was from the Taxol? You took Gemzar and ?
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Grannax2, I did dose dense carboplatian with weekly taxol. So week 1 was carb/taxol then the next 2 weeks was just taxol. My white blood cells tanked eventually on this plan. Iwas always taking a break and getting my doses reduced. My hair started to grow again with breaks and reduced taxol. So you are right probably the taxol that took the hair out. Praying you keep that beautiful ponytail 😊. Sorry if I’m confusing.
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Hello friends,
I am new to this forum. It's been great to read all of the stories. And so much knowledge!
I was diagnosed de novo on 3/3017 at the age of 45 -- mets to liver, bone, and tiny lung. Did great on hormone therapy until early this year - NED bones, NED lungs. Very stable and small liver mets.
Then this Spring cancer did a big mutation and got aggressive - between January and Mayscan things exploded on liver. Conglomerate mass about 12cmx6. Biopsy reveals still ER/PR+, but also ESRI mutation (resists AIs). Started Taxol. Tolerated ok. Just scanned after two months and response was not good -- perhaps a mixed response, but mets still progressing slightly and now two small, new lesions in the right lobe. Liver enlarged, but still functioning well (high-ish enzymes, but normal billirubin). Pretty scary to have such a nominal response to first ever chemo.
Queue grief and fear and praying I'll see my young kids finish elementary school. All the feelings many of you are familiar with.
Doc wants me to start Xeloda next, which would be in next couple of days.
I would so appreciate any of your thoughts on Xoleda -- any tips for HFS, etc? I really love to exercise and have heard so many mixed things about friction on feet, not taking long hikes, etc..
I'd also appreciate any thoughts on those of you who have had a lot of liver involvement which you were albel to turn around. I'm looking for some sunshine rays here!
Thank you all!
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Valerie nurse on the left...Valerie Gumdoctor patient on the right...
Surgery went very well with several caring people taking care of me. Valerie the nurae is also a kitty lover so we had lots to distract me with. Home resting now with slight discomfort.
Looks like chemo will start tomorrow...probably afternoon.
Thank you to all my pocket riders and well-wishers...I felt you were with me every step of the way.
Gumdoctir - Valerie
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Gumdoctor---I will be in your pocket tomorrow ( and my cat too ). Post when you feel up to it. Hugs.
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Ledascout- I hope the Xeloda works well- I have never taken it, but, looked into it as it was one of my choices when I progressed on Palbociclib . I also walk at least 3 miles per day and I like to sew so the HFS really scares me. I do read the Xeloda thread which is really informative and I did sense that a lot of docs start with a dose based on height and weight and when things get bad they decrease. If I ever take Xeloda I will want to start low dose and go up. There is also a lot of talk about 14 days on7 days off vs 7 on and 7 off. It seems like on the west coast Esp here in Northern California no one does the 7 on 7 off ( not Stanford, not UCSF and not Kaiser) there are also all sorts of cream ideas and cold compresses to feet etc. Hopefully when you’re liver settles down you could go to a CDK 4/6 inhibitor
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Welcome ledascout, you have come to a place we’re you will find a wealth of information. 10 years after my original diagnosis I experienced right side pain and was diagnosed with extensive liver mets ER/pR +. HER-. Shocking for this mom of 3 kids that had just moved our family across the country to a new town. My new MO offered taxol or Xeloda. Said either options we’re great with Liver Mets. I have read that several ladies have had good success with Xeloda treatment for years. Recently I read something about a lab test to see how effective Xeloda will be with your cancer. Read through some of the Xeloda tread for HFS solutions. I went right onto oral ibrance after taxol and thankfulit’s been effective for 13 months now. I work full time during the school year. Treatments have been manageable and I choose to be hopeful that with all the cancer advances we will have years and years of options 🙏🙏🙏
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Hi Grannax, finally you have a plan in place - Gemzar/ Carboplatin. I was on Gemzar for 4 months but no Carboplatin. I didnot lose my hair on Gemzar, though it thinned a bit. My side effects were manageable. My blood count dropped so I had to get Nuelasta and blood transfusion. Other than this, I had no complaints. Hopefully this combo will be easier for you.
Would you consider scalp cooling? Currently I am on Taxol and do scalp cooling. The hospital provides the cooling unit (Paxman) and I have to buy the cap. Paxman charges $150 to $200 per session to use their cooling system. I completed 10 cycles of Taxol. I have thinning hair but not bald! My eyebrows and lashes are slowly growing back. Without the scalp cooling, I would have lost all my hair.
Gumdoctor, seems like you are ready with big guns! Hopefully these IV chemo combo will work for you.
Good luck to Grannax and Gumdoctor.
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it feels wonderful to have so much support here.
Update= Plan B I found out yesterday that my port does not work. Bummer. So I'm waiting, again, for my MO to call with my marching orders. I sure wasn't planning on having surgery prior to chemo.
But, I did find out from the pharmacist at the cancer center that she does not expect hair loss with my combo. I'm elated about that news.
Gumdoctor give me the scoop on port surgery, please. 💞
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Grannax- Were you having Port flushed all this time??? I had a Port placed after mastectomy (Aug 2017) in prep for chemo ( we thought Stage 2 at that time ). Not bad. Some soreness after but doable. We gave 2 chemo treatments thru it and then found the liver mets so chemo stopped. Since then we do monthly flushes to keep it working. Sometimes they cannot draw blood from it, but it always flushes ok. The doc wants to keep it in case we have to do chemo again ( like in your case ). Do they know when the surgery will be?? And then chemo day after like Gumdoctor? They did that with mine too - surgery 1 day chemo the next.
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Grannax2, I am pretty sure my IR said I could start IV chemo on same day as port install. Maybe I dreamed it.
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Liver metsers, I can't seem to find this info, so I am asking from your collective wisdom.
My SGOT (AST) was mildly elevated this month..usually runs about 25, now 50. All other tests, including SGPT (ALT) were low normal.
Thoughts? Figured I just watch it for trend. I will put a call in to my MO. She hasn't called, so figured she is not too worried.
S
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Throwing this out there honestly because I don't know where else to turn and I know this group has the collective knowledge and wisdom to offer solid input. Short version of story....currently bone only mets but have been dealing with intestinal/gastric issues. Around 8 to 10 weeks ago, I started experiencing abdominal bloating, pain and tenderness. It was time for my scheduled CT but the only thing it mentioned were "thickening" walls of bowel and possible enteritis. Fast forward to now....had US yesterday and it revealed nothing except for small volume ascites. From this past Saturday to Tuesday of this week, I doubled down on my Lasix and lost 12 pounds (of fluid) during that 3 day period. I was also on home oxygen for 2 of those days because I was so bloated it felt like everything was pushing up into my chest preventing me from getting good breaths. Saw MO today and she said since US didn't show anything, we would just "watch it". I'm tired of just watching it and being miserable. My bilirubin today is 2.4, I have clay colored bowel movements, very tender in abdomen area and on/off again wicked itching of different extremities. I know deep in my heart that something is just not right, but I can't seem to convince MO. She said she would put in a referral for a GI doc, but I've had a colonoscopy (routine) within the past year so I'm not sure that insurance will cover another one.
Just looking for any thoughts and/or opinions.....good or bad.
Hope ya'll have a wonderful, blessed day!
MM (Angie)
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Does your MO know you have clay colored stool? Could your gallbladder be a problem?
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hi. I am wondering how you ladies found your liver mets?
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Angie, I’m not happy with your onc right now. Dr. Lazy, Look at your patient, not just the scan report! Don’t just “watch it” because it’s not obvious to you what the problem is. MM, your insurance might not cover a simple screening colonoscopy right now but if it is needed to diagnose an acute problem I would think that would be different. How long is this GI referral supposed to take? Have you tried your PCP? How about a nurse navigator or a patient advocate? You gotta make some noise. List your symptoms clearly and succinctly as you did above and say, “Something is not right. We need to investigate.”
Recently I had a constellation of symptoms that included extra tiredness, orange urine, epigastric pain, and itching. I was not sure if I was getting yellow. So I figured I would not bug my hardworking onc and I told my PCP. Maybe I had a gallstone or something. He ordered a urinalysis. The result came back no blood, no bilirubin. PCP called and said according to the test, I was just dehydrated. But I knew something was not right. So I went in for my usual labs at my cancer center three days early. On my way home the nurse called and said please come back, your bilirubin is 5.6. So that urinalysis was a false negative and I was right. Turns out there was a mass, cancer, blocking my common bile duct. I got a stent and we are working on diagnostics.
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UCFknights... Hi mine were found with a CT of the Abdomen with and without contrast.
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Grannax2 it is a bummer that the port is not working. I had the port surgery prior to starting chemo. It was actually not too bad. This was done by the breast surgeon and he preferred general anesthesia. Port area was a little sore the next day. 30 mins prior to chemo, I apply 5% Lidocaine cream to the port area and I don't feel the needle at all ! My MO had given me a script for this cream and I use it every time before chemo or blood draw. It is the best thing ever! It is wonderful not to lose hair with chemo.
masonsmawmaw (Angie), I agree with ShetlandPony you have to be proactive and go with your gut feeling. If the appointment with the GI doctor takes longer, maybe you could call your PCP?
ucfknights, my liver mets were first detected on thoracic MRI which was ordered due to my back pain. I had no symptoms due to liver mets. I have bone mets all along the spine.
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UCF, my liver mets were discovered with ct scans before starting chemo (we thought) because I already had at least one positive axillary node. No symptoms at all but scan showed 4 subcentimeterliver lesions and a lung nodule. IV chemo was out since I was now metastatic and Ibrance & Letrozole were started.
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My port was used for my 2009 chemo with Abraxane. I don't remember it being a hard surgery at all. So, it's ten years old. My history died on the last day of my treatment. I did not get it flushed very often at all like I was advised to do.. My bad. So it's not too surprising that it didn't work. I haven't heard anything yet from scheduling.
Waiting..........💞
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I am also just starting the Gem/carbo combo for my exploding mets and ascites. This is my off week for my first 2 week on, one week offf cycle. Because this start was mixed with a hospital stay, multiple ascites drainages. Hoping to get a better feel for how cycle impacts me over next couple of weeks
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sandibeach5- AST values can very for various reasons. I would watch for trends and not worry. Always positive to see normal ALT and bilirubin.
UCFknight- mine liver Mets were diagnosed when I went to the ER for what I thought was gallstones😞. They did a ultrasound and the ER Doc said “the good news is your gallbladder looks good....but you appear to have masses in your liver that are consistent with MBC....Do you have a history of BC?" 😱😭 I would not wish this scenario of finding out for anyone. Then they did a MRI to confirm.
Grannax2- my 2nd port was placed in the same spot they had removed the original port. I was scheduled for outpatient the day before my first infusion. It all went pretty seamless.
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Liwi. We're on the same drugs and almost the same schedule. I start next week. Day 1 is Wednesday July 31. Mine will be both drugs on Day one an day 8, then one week break. Then start again, it's a 21 day cycle. Sounds just like yours. Did they tell you your hair probably wouldn't come out?
Anewbreath. I like your name. Yes, I expect the procedure will go smoothly. What sedation meds did you get? My son, the anesthesiologist said he uses propophal. I hope they do. It works best for me. First they are going to try a procedure with contrast, they better not use iodine, to see if they can find the problem. It flushes but does not give a blood return. If they can't get it to work, they will put a new one in. I'm highly allergic to iodine. 💞
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Thank you Grannax2! I looked over my patient portal for what exactly they gave me and for some reason I'm not able to find that appointment. Sorry, I recall it being something standard. I hope that they are able to figure your port out and that they definitely don't use iodine! When will you have this done? That is wonderful that your son is an anesthesiologists, someone close to you to bounce things off medically. Does he work close to you? My middle son is Pre-Med. So praying I will see him through that and one day he will be of some help.
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Grannax I will start my 2nd cycle on Thursday August 1st. Both drugs, same as you on day one, both on day 8 then a one week break. Today I had bloodwork done on my off week which is something I get because I've had problems with electrolytes. They ran my CBC blood count instantly and found that my hemoglobin is quite low so I may have to get some kind of a boost in order to be ready for my treatment next week. The nurse practitioner is going to work with my insurance and see if they'll cover this. I've been pretty good about maintaining my blood counts through most of my other treatments but they told me this one is the one where they will go down.
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Grannax - I received Fentanyl and Versed for sedation for port placement.
It was accessed the next day and it was not smooth...25 minutes of digging around by 2 nurses. One was in tears because she knew she was hurting me. I hugged her to help her feel better when it was over.
It is healing now and feels much bwtter than the day it was accessed.
Thinking of you...
Gumdoctor
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Gumdoctor. That does not sound fun. It does seem like it would be smarter if they would wait till it heals a little before they start using it. There's a chance mine will be done on Tuesday by my own IR, them chemo Wednesday. So ill be in the same boat. UGH
Liwi so you are one cycle ahead of me. I'm a little anemic right now. I hope I don't tank. I did start a Gem/Carb thread so that we can write down out experience. I hope you will post there, too. I think it would be helpful for others researching different types of TX. Hope you do well. 💞
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Seemingly my wife now has another loop hole that has popped up with the new treatment Gem Carbo. Her platelets were at 61 yesterday and the NP was not going to treat. After going back and forth with her that the count was only at 56 2 weeks ago and nothing was said, she called the MO and said he believes the platelets are down due to the cancer in the liver and is going forward with treatment at a reduced dose. While I'm happy she is receiving treatment , I feel this is a last ditch effort to balance things out or figures there's no hope at this point and what the hell. Anyone heard of this or have this issue. I've heard of the platelets being low due to chemo but have not seen the liver cause this. This is truly a catch 22 now and fear they will fall further preventing future treatment. Is there anything she can do to get or keep the platelets up.
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