How are people with liver mets doing?
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Nicole,
Just an educated (or uneducated?) guess here, but I doubt that that would have happened so fast on your new drug. I have had weird creatine number for PETs and other tests when I haven't hydrated within a certain period of time of the test.
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bev... well thats kind of good to hear...if I didn't have those twinges of pain the other night I wouldn't have thought twice about it...but ... yea. Today is just not good. I just am not feeling positive..I have not been feeling positive about the Xeloda from the start (you know this)...and now already having some numbers out of wack...yea... I have had that test before and the numbers were always normal....
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Topacio, I had A/C (Adriamycin and Cyclophosphamide) in 2015 as my first-line treatment of Stage 4 because my cancer was very high grade (aggressive). My onc gave me another option - a slower hormonal - , but recommended this and I jumped on it, despite being very anti-chemo at the time. It saved my life. I lost my hair immediately and had some fatigue, no nausea, no neuropathy. The worst SE was a week of mouth sores, but those resolved. It can be a very rough regime for some, though.
I wish you all the best.
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Thanks to all the lovely ladies, and their answers , Aleluya for the Internet
I don't know what I will do with out all this support.
Thank again I hope this new year will bring us only good things ...
Topacio
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I think In my mom's case another doctor suggested to her to take glutathione supplements and also she has had Glutathione intravenously. She has been doing that now for ages.
I just read on this forums that if you have liver mets you shouldn't be taking gluthatione because helps the cancer cells to fight against chemo.
Probably thats why Abraxane was dropping the TM but the tumors on the liver grew very fast.
Can't understand how some people can be that so irrispossible
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Yes...very true when I read that you said she is taking Glutathione I was like NOOOOOO!!!!
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Hello Topacio...I had been on Doxil every 28 days until this past Tuesday. I had horrible rashes and mouth sores with Doxil. My third treatment brought on a horrible rash with burning, raw peeling skin. I had TEC (toxic erythema of chemotherapy) and CARP. I received a steroid cream. The doctor said my body had a hard time processing the fat liposomes. I know this is not typical for people who have Doxil.
As of Tuesday, I am now on Adriamycin once a week for three weeks and one week off. Yes, I am nervous about the side effects as I didn’t opt have this treatment with my initial diagnosis.
There is a thread on BCO called All About Doxil.
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bbpie, I did have that too on Doxil, on my second and third treatments - on the back of my arms, in my arm bend and the area where one would have "back fat". It is not uncommon but is nearly always temporary and short-lived. It was like the mini blisters came from the inside and eventually erupted at the surface. The pain was horrendous, one of the most painful experiences of my life. It is pretty common cycles 2-3 and then usually doesn't come back. I had it either cycles 1 and 2 or cycles 2 and 3 (can't recall specifically which two) and I didn't have future problems with it after that. Most of the cells in the body are able to clear Doxil in 3 ways, whereas cancer cells can only clear it in 1 way. The one exception is the skin - sometimes the skin has issues clearing Doxil but after a few cycles the body "learns" how to do it. I also learned more about the issue and how to prevent it. It is drawn to areas where there is any ever so slight trauma to/friction on the skin (like where I had my IV bandage during chemo) and areas where the skin gets hot and/or sweats. It was awful on the back of my arms and around my armpit but I had none right under my arms where I wore antiperspirant. Perfectly clear there - because of the antiperspirant. If one can prevent the skin from sweating and prevent friction, it can prevent the damage.
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Very interesting, JFL. It sounds similar to hfs, only in other places. Avoid heat, pressure, and friction? If I raise my arms, I can see reddened skin on the inside of my upper arms, and down my sides to bra-strap level. And I wondered if underarms looked better because of antiperspirant. I wonder what will happen after my second infusion. And my bra is hurting me on my sidewhere it used to hurt after surgery and radiation. I had gradually been able to resume wearing an underwire occasionally, but now it hurts again, not just skin but inside. Speaking of second infusion, does anyone know if having a cold is likely to disqualify me from my Doxil infusion? You know, a day of sore throat, then the stuffy head, now beginning to cough. But I want my chemo. There have been far too many interruptions and delays in treatment the past four or five months.
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Shetland, I would recommend avoiding underwire and sticking with loose clothes to the extent possible. I found that even the seams on my clothes would cause enough friction to trigger something at times. I had a few mini rash blister spots on my thighs or hips from where I slept in loose, soft pajamas with a seam on the side. The "no friction/no heat" window is around 1 day before treatment - 5 days after. No one told me that but then, a few months in, I found it on the drug maker's PPI (patient package insert). Would have been good to know that at the outset! I could have saved myself some major discomfort. I would suspect a cold will not disqualify you unless your blood counts were really low to begin with.
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Thank you, JFL! It’s really good to know this about preventing skin problems. My blood counts ought to be ok, so I will just go ahead and show up, wearing a mask of course.
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YEP! no disqualification from Doxil due to cold...they infuse right through...
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Good Morning All.
Can'r sleep so thought I would do a little catching up.
Started the IMMU -132 clinical trial today. We were in the clinic for 11 hours with a 2 hr lunch break. 5 pre-meds (Tylenol, Aloxi, dexamethadone, Benedryl and Pepcid) plus labs including urinalysis and an EKG 3 hrs after the infusion.
Very long day but all went fine. Husband packed a great lunch box for us and we had fun eating all the goodies he brought all day.
Known side effects are similar to the Abraxane I just stopped 4 weeks ago. Hoping they will be similar for me. Even if difficult, there is something comforting in the familiar...
Heading back to bed to attempt some sleep once again.
Gumdoctor
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Gum doctor it sounds like you sailed through your first day - they are so long! - and I'm glad you got to eat the goodies that your husband brought. When I was on my clinical trial I had to fast for 6 hours before taking the study drug and for 2 hours afterwards, so by evening I was starving!!!
I am hoping against hope that this trial works for you; it sounds really promising!
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Gumdoctor praying you got some sleep and the trial works wonders!!!
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Gumdoctor, WOW, that was a long day for sure. Will each treatment be like that? Glad you had the lunch box and your husband to keep you company. And I understand what you mean about familiar, even if it’s not pleasant. I hope you can have a restful day today!
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Gumdoctor- You are in my thoughts and prayers. When you feel up to it, what is the med like? Potential side effects? Next planned scan? Are you getting the drug or one of those trials that the patient doesn't know if they are receiving the trialed med? Sorry for so many questions. Hugs to you. Rest my friend.
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Hey all. I just realized, I am officially at the 5 year point from my mets fiasco today! 5 years ago, I was hospitalized with a liver full of tumors, swiss cheese bones that had me in a really dire state with uncontrollable hypercalcemia and 2, 2cm supraclavical lymph node tumors. It all happened while I was at my company's recurring board meeting - the same meeting that was held today. My DH picked me up from the board meeting and I went straight from the hotel, about an hour after I was busy presenting to the board, to the hospital where I remained for over a week and then only was let home because my DH is an MO and could run a 24 drip I needed to take for the hypercalcemia from home. I was still in denial and thought I was fine for the first few days in the hospital and that there were non-cancer reasons for all of my symptoms. It was my first pregnancy and I knew no better. My breast cancer was masked by my pregnancy and evaded my team of doctors and me for over 6 months for that reason, despite my repeated complaints of excruciating pain. It took a bit of time to officially diagnose me in the hospital as I was pregnant and the only scans that could be performed were a chest X-ray and liver ultrasound. Bone mets were determined based on ruling out all other causes of hypercalcemia and I eventually had a supraclavical lymph node biopsy.
Anyway, I wanted to post my experience as it is not only bone-only metsters, metsters with minimal, oligo-metastatic organ involvement or metsters that make it many years on their first line of hormonal therapy treatment that make it to the 5 year point. I have been on numerous lines of treatment and my liver has progressed each of those times. Shockingly, my bones have behaved much better, although the prognosis for hypercalcemia like I had it was very grim with most people passing within a few months time. It is funny, I didn't join the liver mets thread for over a year after I was diagnosed and joined this board as I didn't have a chance to even think about my liver until my bones had healed up and all of the excruciating pain and physical limitations due to the advanced nature of my bone mets had cleared. In hindsight, it seems so strange! Also, it took me a few years to realize some of the pain and numbness in my back and what seemed to be my ribs turned out to be liver pain and my liver pressing on a nerve in my back.
I don't know how long I have but will continue to keep myself here as long as possible for my now 4-year old son that will turn 5 in a few weeks. I ended up having to have him nearly 2 months early as the likelihood of him surviving being born 7 weeks premature was much higher than the likelihood of me making it even a few more weeks until he was more developed. It was the most awful thing in my life to have to make that decision. I took Taxotere, various steroids and bisphosphonates as "bridge" therapy while pregnant and when my treatment options were limited but they did nothing to lower the hypercalcemia. My whole body was in so much pain. My son had to remain in the NICU at the hospital for nearly a month after he was born and wear a heart monitor for 5-6 months to make sure he didn't stop breathing. To this day, when I check on him when he is sleeping, I check to make sure I can hear/see him breathing after spending the first 5-6 months worried he could stop breathing at any moment. I felt such guilt that he had to suffer so extremely because of me, which has caused me to be a bit less strict as a parent than I had planned with my son. He is now a very tall, smart, strong (both physically and mentally), beautiful, lively little boy. Anyway, the point of this is not to be a downer but to show that there is still some hope even when your circumstances are pretty damn ugly and knarly and everything seems hopeless. I also still work at the same job and have been promoted a few times since I was diagnosed. It is not all downhill after mets diagnosis.
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JFL - thank you for sharing this. An important reflection point for you on all that you have persevered through in the past 5 years. Holy smokes it's a lot. And it serves as a good reminder to us all that no one ever knows what's to come, no matter how dire the situation may look in the present.
I'm not sure the "appropriate" thing to say. But how about congratulations on 5 years, and may you thrive for another 5 as well. Not a cake-walk for sure, but yet you have accomplished so much in the 5 years raising your son, working, living, and fighting. Your story is inspiring!
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Dear JFL, I pretty much knew your story, as you posted a few details before but your story was the one I could hang on to when my wife Sandra was diagnosed. I remember holding my 2 year old boy before my parents took him away to let us go to doctors to "hear out the verdict" - stage IV de novo, liver full of tiny 2-5 mm tumors. When I came back to pick him up after crying together with my wife on the bench near hospital (uh, it was such a beautiful and warm summer morning), I could not look into his eyes. I felt I failed everyone... I know I don't have to feel this way but to this day I feel guilty, as if I did not notice something, as if I failed my boy. His mummy is a hero though. She fights slowly but with big heart. She was busy and worked throughout all chemos (she is the head accountant for one big company here, worked with few days on/off here and there during docetaxel), her colleagues supported her very much. We are only 2.5 years but I feel more confident now, and our boy is exactly same age as yours, healthy, strong, grows up surrounded by love. You are a real inspiration to everyone here, and on top of that you are the best mother in the world. Your boy is lucky you are his mom. For sure we'll talk about your family with you during next 5 years! With all my heart, Saulius
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JFL...I don't post often here, but do come here to read every now and then. I was diagnosed with extensive liver mets in Aug 2018, extensive in that my largest tumor was 13-14cm. Fear doesn't even begin to describe what I was feeling, I too am raising kids who were 10, 13, and 13 at that time.
I came here to read all I could about liver mets and came across your story, and I have to tell you that it was your story in particular that inspired hope in me. Having that hope that treatments could extend my life was so powerful for me.
So I began my Taxol, taking it one day at a time, and hoping and praying that it would work. This month marks my 16th month on Taxol. It hasn't been easy, but I'm fortunate side effects have been minimal and tolerable, and most importantly that 13-14cm tumor is down to 5 cm now.
So thank you JFL for sharing with us, and I pray that you continue for many years to make special memories with your son and family.
PB
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JFL, you are a source of hope and inspiration for me as well. May you continue to successfully manage the disease for many years to come. Hopefully, the COC and more effective therapies will be available soon to help resolve the fight once and for all. Congratulations
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JFL,
I am so moved by your story and I'm tearing up which I don't do very often . I wish you and yourfamily a season of light full of merriment, hope, and peace.
Long may you run, my dear!
Katty
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JFL..i am with katty...tearing up reading your story!! God has truly blessed you giving you these years with your son and your positive attitude. You have been such a source of inspiration to me having had a liver full of mets and Grade 3 and here you are!!!!!! May the Lord continue to find you and all of us treatments to help us not only Survive but THRIVE!!!!!! ((((((hugs))))))
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JFL,
Thank you for posting your story. Like Saulius, I had figured out some of your story from thing you've posted, but I didn't know the extent of your early metastatic illness. You have been through so much! But through it all, your persistence and will to keep moving ahead comes through.
May you have many more anniversaries like this one!
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JFL. What a story and it's not make believe, it's real and it happened to you. When your son gets old enough and you tell him the story, you will be his hero! No one will ever take your place in his heart. No fictional heroes will compare to you.
I hate that you had to go through all that at such a young age. But, your your young body probably helped you to get where you are today. I feel old and worn out today. In two weeks I'll turn 72. UGH. Today I feel every year is making it harder to survive. My body feels ancient today, three weeks out from my second round of y90s.
I had my post right lobe labs done on Monday, I should know the date of the left lobe today. I know I'll feel better when I have a plan. I also know my mood will shift when I have a plan. Thank God I know that about myself. 💞
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Grannax,
Good luck in getting your next Y90 set up. Hope the labs were all good. As you say, when you have a plan, things will feel better.
I attended my first session of a metastatic breast cancer support group last evening. It was fascinating hearing the different things that people have been told by their doctors. One thing that struck me was this woman who has been heavily treated whose MO told her that you can only have interventional radiology treatments if you have only ONE liver lesion. We talked briefly after the meeting, and she is now going to look into Y90 because now she has multiple lesions. I told her she should at least go for the consult, whether or not her MO is supportive. I would not have known about any of these local treatments before I started reading about them in this forum. So I'm grateful to you, Grannax, and to all of the others who educated me enough so that I knew the right questions to ask.
Tomorrow I am having my 6 month MRI after my microwave ablation to one lesion on my liver (the largest -- 2 cm) and afterwards, I will meet with the IR who did that ablation to discuss where we are with the liver lesions and what we should do moving forward -- if we should do more localized treatment. My tumor markers are coming down on Ibrance/Fulvestrant but I'm fairly certain that I will still show some liver lesions. The question is how many and how large.
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Bev Jen. Now, you have a place to advocate and educate. That's awesome. This thread has been invaluable for me, too. I've learned so much here. I am one of the few whose MO sent me to an IR. I had no idea what a y90 was until she mentioned it. Unfortunately, that MO did not work out for me in other ways. But, she has one gold star for that referral.💞
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JFL- Your story is inspiring. Congratulations on 5 years and hoping for many more !!!!!
Grannax- Prayers to you always.
BevJen- In your pocket for the MRI and results.
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Dear JFL Wow, what a story!!! Here is hoping that the treatments ahead will be stronger and easier, and you will heal as you go, and be able to fully enjoy life with your son and family. I'm stunned that you still work!
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