How are people with liver mets doing?
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As usual these days I have not caught up on reading this thread. I skimmed and just had to log in and give a word of encouragement.
Lisbet, my friend, that doctor gave you the worst-case scenario about Taxol. Now I know everyone is different, but I'm here as an example of a best-case scenario. I had extensive scary liver mets at mets diagnosis and started with Taxol. I did five cycles. I did not have nausea or vomiting. I did not gain weight. I was not in pain. I did not get permanent neuropathy. I was not hospitalized. I did not get kidney damage. The only things that happened were: I was sleepy on infusion day, and for one or two days per cycle I was tired and a bit achy so I took it easy. I lost my hair (it grew back). I had some mild, temporary finger and toe tingling/numbness. Oh yes, and a complete metabolic response. As in no evidence of active disease.
I am not telling you this to brag and I know I was lucky. I just want you to hear another side of things and not give up on a treatment that could be very do-able and effective. I enjoyed my life while on Taxol and do not feel that I suffered. I taught my dance classes, enjoyed socializing, and did many of my usual chores and had help with others. So my point is that if Taxol treated me well, it could do the same for you.
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Lisbet - It seems as if DK and Canada have sort of the same protocols. It was Taxol for me when liver mets were discovered but I needed the big guns because of the extent of the disease. I did 6 cycles of Taxol, never had a fever, never hospitalized, never had kidney problems etc. They have to list the possible SEs but everyone is different. My SEs were mostly fatigue and gastric issues. Nausea and vomiting are controlled with meds. As for driving, they told me the same as you. I drive myself back and forth, no problem. The pre-meds here include Decadron, Benadryl and something to coat the stomach. I don't know how long you have to drive but I never had problems (30 - 45 min drive). To put your mind at ease, it would be good to have someone accompany you the first time to see how you react to pre-meds. I am switching to Epirubicin next week and I will start a new thread on it. It seems it is more commonly used in Europe and Canada and possibly Australia. I was also told Xeloda will be down the line. You will work out those logistics, it's just too much at once right now for you. I wish I could be of more help.
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Blume and Lisbet I'm still pretty new here but I wanted to weigh in on the Taxol. I was a no Tylenol kind of gal too never wanted to do any chemo and I was doing pretty good on hormone drugs till last April. Cancer decided on visiting my liver and I almost died within a few weeks. Went from super healthy Wendy to I can walk to the bathroom. Started Taxol and within a month I was better, now I've finished six months just had a ct scan yesterday and I will find out what's going on on a Tuesday with my onc. Scanxiety level ten... went well through the whole six months on treatment and now that I'm done my feet are pretty painful nerve damage I'm hoping it doesn't take a year to go away😳 . My fingernails are now starting to come off hoping that stops soon. Other than that I'm good if the scans are good it was all worth it. Good luck
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Wendy sending positive thoughts your way for great scan results on Tuesday and for your nerve damage to improve quickly
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Wendy, good luck is being sent your way for good scans this week. Just a quick question regarding your foot pain...has your doctor prescribed gabapentin? Often it is used to help with that darn burning sensation.
Good luck to all and prays that we all have a wonderful week.
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Thanks ladies I always think we can talk ourselves into so much regarding our health I want to make it positive instead of worrying about the worst.
Blume I saw that you live in Berlin I live in Germany for ten years my daughter was born in Dahlem in Charlottenburg happiest time of my life. Where about are you? Miss all those museums
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Thanks ladies I always think we can talk ourselves into so much regarding our health I want to make it positive instead of worrying about the worst.
Blume I saw that you live in Berlin I live in Germany for ten years my daughter was born in Dahlem in Charlottenburg happiest time of my life. Where about are you? Miss all those museums.😊
NO1-2NV no I haven't taken anything for it yet will ask on Tuesday thank you
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Lisbet/Wendy3- I still walked 3-5 miles per day- I just did it in flip flops which were the most comfortable (chaco) and then slowly able to go back to shoes.
I also didn't get Benadryl since that has worse side effects than the taxol for me- I got Zyrtec. much less drowsy. Did get the steroids and stomach protectors however.
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Wendy I'm just on the north edge of Berlin, I love living here, been here for 9 years now - I'm from England originally. The museum's are really excellent here! Dahlem I know well, it's a lovely area, have been to the botanical gardens there many times, but the area is lovely too, almost a village like feel to it.
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Shetland you made me tear up when you said that she stood up for herself when she was so ill, it just hit me you are so right, she really was incredible.
JFL I am trying to find out myself, about the level of incompetency.
Bluebird my heart started beating so fast as I read your story. I COULD believe it!! Totally.
Kayyborg – you say cultures? Do you mean the type of blood they draw every few hrs? Did the WBC show high? Sometimes these fevers come and it doen't show high WBC.Tonz and tonz of hugs
Linda just so sorry. What is Epirubicin, I looked it up, but I don't know anyone taking it.
Guys I was not writing, I was busy thinking and talking to doctors.
Friday, Dani tells me she feels still some pulling inside, so we were back and forth with Urologist's office, the bottom line is we'll go tom for a revisit. In the meantime, I was just leafing through some (I only got some) paperwork from the Urgent care, and I am fuming. First off, the urine sample, after checking in with Dr google, def screams look at me, something serious is going on. The report sent from Urgent care, is that the blood got lighter, and so they sent her home for outpatient follow up. IT'S Freaking NOT TRUE!!! They sent her home because the CT was closed. They did nothing for her. I am so mad. She suffered so much. THEN there was a problem with EKG that I noticed, I could not believe it, I immediately faxed our Cardiologist he said this needs to be rechecked, NO ONE told us that, we have an appointment 9AM tomorrow morning. So this is distracting me from the important things of really looking how she could be helped.
Onco sent a response email that she is on top of it, looking into options. BUT I cannot communicate with her. Maybe tomorrow we'll call someone else .Babs was so kindly nudging me to act, I was trying very hard not step Onco's feet. But if I can't get to see her, she can't set up appointments, then I'll have to do something else.
I think the only way out now would be Chemo, Taxol? Of course she took it already, but, and the side effects. What other option? Another trial? How can she go on another trial, only after 4 weeks from the last CT it showed progression in the liver, we did not even see the rest of her body, who knows what's going with the lungs, it's so crazy, she is at a top Hospital or so they say, in NYC a top doctor and so what??? I'd prefer to be in the boondocks!!!!!!!!!!!!
Any and all suggestions is welcome.
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Thank you for all the replies. It's overwhelming that I meet so much friendliness! I will call the hospital tomorrow (Monday) to see what can be worked out about transportation.
The info I got with me home on taxol seems to be lacking some drug names. It says I will have IV prednisolon, Tavegyl (doesn't say what this drug is for?), Zantac (doesn't say what this if for) - then taxol. And drugs against nausea - doesn't state drug names. When I call I will ask the nurse if it's possible to skip the drug that makes me drousy so I can drive myself.
It's not really a solution to stay overnight in the city because of my animals. Also it's too time consuming. Right now I'm also scared that I cannot keep my job - that would add financial worries to everything else. I can ask a neighbour once in a while to help me out with small stuff - but as the weekly taxol will be permanent - that would make it 52 days a year (should I be so lucky that it works!). I cannot ask anybody not related to me to do me those kind of favors. I have to make a little room for needing favors if I get really sick and dying. I'll see what can be worked out.
I'm glad some of you chimed in that you didn't have that many SE on taxol. Nkb - thank you for clarifying your SE. Your initial post scared me.
I'll spend the coming week looking out for transport, talking to the hospital about drugs, looking at wigs/hats and permanent make up for eye brows and eyes. I never thought I would find myself in this situation. Really grieving at the prospect loosing all my hair and afraid I'll be isolating myself due to becoming so ugly. Maybe a small thing - but this disease seems to be all about loosing everything little by little!
LindaE54: Yes, I was also offered epirubicin as an alternative to taxol - should it not be possible for me to do the weekly thing. But both doctor and nurses made no secret that the wise choice would be taxol - and then spare epirubicin for the case that taxol doesn't work. Also it will only be possible to do epirubicin for 9 cycles to avoid too much damage on the heart pump. So when you finish the 9 cycles you can never have it again - and then I would be left with taxol anyway. Epirubicin would also have more SE than taxol because the dose would be larger as it administered every 3rd week compared to the weekly smaller dose. However, if it's impossible to solve the transport problem I may have to choose epirubicin - only going every 3rd week would make it easier to ask someone to help me out. I hope the drug works out fine for you - and I will be looking for your coming thread on this drug.
LindaE54, you mention you drove yourself to the hospital anyway. I am thinking of doing something like this too - but not sure if it's legal? I have a 45-60 minute drive to the hospital. However, most of the drive is on the highway so I cannot stop if I suddenly get a turn.
I'll let you know how everything works out. So glad that so many of you took the time to ease my worries and fear. It's still there but good to know that you have people who understand you back you up!
Wendy3 - wishing you all the best news after the scan!
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Lisbet, We will all be thinking about you as you try to find solutions to your dilemmas. I do hope everything works out for you. Please keep us informedsince, as you can see, there are many people here who care about you.
Hugs and prayers from, Lynne
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Mom, I don't even know what to say. Dani is lucky to have you advocating for her. Can you imagine how difficult it must be for people who have no one to help? I continue to pray for you both.
Hugs, Lynne
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kaayborg, So sorry they have you held hostage in the hospital. I'm going with the tumors dying/hence fever theory too. Look forward to them springing you with a new Tx plan.
Lisbet, I just get fumed hearing about this doctor and his apparent insensitivity and cluelessness. Lots of good advice here for the transport problem. Keep up the good fight, don't give up. You will get this all figured out.
Shetland, Your post lifted my spirits as we have a similar Dx. Hope springs eternal.
Good luck on the scans Wendy!!!!
Lynne, You are such a great cheer leader for us all....
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Lisbet - Thank you for the details on Epirubicin. I had completely forgotten to ask the frequency and you answered all my questions!
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LindaE54: What I wrote about the epirubicin was what was offered me at my point - it might be different for you.
I called the hospital again today - the nurse insisted that I can only get the home transport. She called me back later and said that 5 km away I will be able to get public transport if I shift between buses and train 3 times. A 5 km walk should be considered acceptable. I'll have to agree to that and suppose I can manage driving the 5 km when the bad weather sets in. It's a country road with very little traffic so even though I might be a bit drugged, it should be doable. The bad thing about is that it will make the weekly taxol a whole day project and require that they stretch themselves further at my job. I hate to ask!
If I'm not allergic to taxol the drug that makes one drowsy will only be administered 2-3 times at the start up. So I hope I'm not - and then the problem will be solved. I also hope to get a dispensation from the steroids. They really scare me. The nurse didn't know if this is possible - but she was kind enough to add that she fully understood that I want to skip this part of the treatment. It's only to make it easier isn't it?
I found a another thread here on fasting during chemo-treatment. It seems several have avoided many SE by fasting before and after treatment. Very interesting thread!
I still haven't told the hospital the final 'yes' to the treatment. I tried to call the hair center to make an appointment for a wig. However, I couldn't do it. Picked up the phone several times - and put it back again. I don't know if I'll get it done tomorrow. Right now, I think not! To make plans to do this to my body feels like planning to commit a serious sin - best way I can describe it.
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For the sake of others - please don't drive when you are taking drugs that affect you. Sorry to be a misery - I understand that its a real problem that you are trying to fix. I was in no state to drive after I had the antihistamine alongside Taxol.
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Ladies I need you. I'm in er so scared. Dr says liver not doing good. Need more aggressive than Doxil. I'm afraid this is the end. Anyone have major bump in the road and got new meds and got better? I'm waiting on CT scan. Need talked off ledge.
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Scwilly, don't worry - I would never put other people's lives in danger. I don't know how things will turn out and how drugged I'll be. I think I just meant that if there's heavy frost or snow and I generally felt OK it would be all right to drive 5 km which is a 3 minutes drive on a country road with no traffic at all.
Lvin - so sorry for you! I feel your anxiety. I'm sure you'll have good answers and hope from the more competent ladies.
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Livin. Are you in ER for pain? Doc might mean the liver numbers are not good . Which can happen but does not mean the end. If you're swollen they can drain some fluid off. What's happening now?
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Livin AZ44 I guess your MO sent you to the ER. It could be wants you have a clear picture/CT of the liver to clarify, if your lab work showed your liver numbers were elevated. If you're swollen they can drain some fluid off.
What's happening now?
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lisbet. I think it's very important that you take the steroids. They will keep you from having an allergic reaction to Taxol. And they don't make you sleepy, quite the opposite is more likely. It's the anti -anxiety med, like Ativan, that would make you not safe to drive. You probably already know how you react to benadryl. If it makes you sleepy or if it make you hyper, like it does to me.
Also, you don't have to get your wig today. It usually takes 10 to 14 days for you to start losing your hair. They might even tell you at the cancer center where you might get a free one.
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Lvin, what treatments have you had so far? Have you tried xeloda? My wife had extensive liver mets, the Oncologist preferred that she start with something he felt was stronger, a taxol, but she wanted to keep her hair, so she instead tried xeloda. It worked like gangbusters (over a year) and never quit working. If you haven't tried xeloda, ask your onc about it. They don't know whether a given therapy is going to kick cancer's butt, or yours.
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Thanks for clarifying Lisbet - I nearly didn't post as I didn't want to appear unsupportive but I have read others talking of driving in similar circumstances, and it worries me. I really hope if you need it - you can get some help with your journeys. I understand you reluctance asking people for help - but sometime people don't know what to do and need guidance. It may only be the first few times.
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The treatment and the trip are going well but I am very nervous and shaken up anyway.
I had apheresis yesterday. Apheresis is "a technique by which a particular substance or component is removed from the blood, the main volume being returned to the body." In my case, they are removing the white blood cells. Involves being hooked up to a machine for an hour with an IV. I don't recall two IV's so I am not sure they were actually returning anything. Certainly only one pin prick. But I can't say I looked at the setup very closely either. They may have been withdrawing blood at one point and returning at another through the same tube.
In any case, Tokyo Clinic is a high end medical facility. Organized and clean. They are so contamination aware here. Everywhere not just in medical facilities. Everything is so clean it gives me a lot confidence at least I won't get an infection from this adventure.
The experience at the clinic couldn't go better, but I become a wreck with anything where I have to directly face the cancer or deal with the medical system. I lost my credit card on the way to get a prescription for a Xeloda like drug I will take over the next two weeks while they expand and activate my immune cells. Spent 30 minutes looking for but not finding my credit card. Lost the drugs I bought while looking for the card. Missed train out of Tokyo to get something to eat, as I hadn't eaten since before apherisis.
I am now 2 hours from Tokyo in Nikko without my chemo drugs so sorting that out will be the adventure for today. That makes me mad ... when this medical stuff becomes more complicated than it should and takes away more of my life.
So, over the last 24 hours it seems one thing makes me upset causing me to do another thing that makes me more upset. And then I get upset about being upset. Need to disrupt the spiral and get back to enjoying this trip which, overall, has been wonderful. I thought chatting you guys should help settle my mind a bit.
My daughter and I have been lighting candles and wringing gongs for us at shrines all through Kyoto this past week. At this temple they have special candles inscribed with an appropriate wish.
Mom - I've heard about so many mistakes with biopsy orders, so I called, I wrote emails, confirming the plan and what would be done with the samples. Still we have mistakes. Just got an email. Key analysis was not ordered. Sample sent to wrong lab. Onc on vacation. I'll get some information, but not what I requested.
I'll never know if this mistake made a difference or not. I am choosing not to get upset. Or more upset. I wrote some polite emails inquiring about the best path forward. Will leave it at that.
I am absolutely devastated to hear about the blood clotting and the ordeal that Dani has been through these past days. I am shaken to the core by what amounts to a complicated blood test. Watching what you and Dani are going through, I am seriously wondering if I will fight that hard when the time comes. I don't know that I can. You are very tough and Dani... well, Dani is made of rare stuff. I will try to get the attention of one of these Buddha's. Sometimes I feel they are as distracted as our oncologists .... but we will still kneel in prayer for Dani, for everyone here and for ourselves today.
>Z<
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Scwilly and Grannax2 - what do I know? Nothing! Right now I'm just plain scared. I never take drugs, I never do alcohol or anything toxic. I have absolutely no idea about how I'll feel when I get the drugs and what they are and what they'll do to me. I just got started on Faslodex/Ibrance - which was a very big thing. And before long I started to feel like a pro on these drugs. And wupti - they didn't work either. I haven't heard of benedryl before - don't think we've met yet. So now a whole new group of toxic stuff to try kill the cancer! I think I just cannot imagine that I will be put that much out by the drug. I mustn't be. I have to get home to work! Maybe I cannot work? It seems that some people have an easy time on taxol but reading through the thread on weekly taxol it was obviously very hard on others.
I believe I read in a post that someone didn't have to take the steroids - and hoped I could get there too. These steroids are really scary. I have a very clear and sharp remembrance what they did to my husband and an aunt.
The nurse I talked to today was not able to answer all my questions. She said I needed to ask them to the nurses that will administer the drugs.
I can get a wig. The hospital already told me so. I even have the telephone number to the center. It's just such a big step for me to call them and I haven't had the guts yet.
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Livin wish I knew more...hated hearing this news from you and want so much to be there for you. I can offer you this much. I've recently been to the ER and then admitted for several days. So much going on in my liver they can't measure one tumor from the next but I am home now and feeling absolutely fine. My hope and prayer for you too. Pm if you need to. I'll check in frequently.
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Lvin, I just saw your post. Are you doing okay? Did you have the CT scan? Did they give you any additional information about a new treatment plan? Other people have seen major setbacks and improved with a change in meds. I am praying for you. Let us know how you are when you have a free moment. We are here for you.
Lisbet, I understand your reluctance to call about getting a wig. It is a big step, and it means facing the fact that you might lose your hair. Many people have that same experience. I also understand why you are reluctant to begin chemo. You have been kind to your body -no alcohol, no smoking, healthy diet, regular exercise. Now you are thinking of putting toxic chemicals in your body. Look at it this way, your body has been treated well. You have done everything right. Now, because of your healthy lifestyle, your body is in the best possible condition to withstand the toxic effects of the treatment and let the meds kill those cancer cells. If the treatment becomes too difficult for you, your doctors might be able to lower the dose so the side effects are less severe. If it is too difficult for you to tolerate, you can stop the treatment and ask if there is an alternative. It is your decision to continue or stop.
Hugs and prayers, Lynne
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Z holy cow what a mix up. You need to do a reset you are doing the right thing. Two of my close horsey friends in Oregon died today. The two had been friends since college over forty years. I find it so sad cancer is worth any fight you can muster.
Jennifer I have really bad veins in my leg looks like a road map so I worry about clots all the time too glad you got it sorted with meds they will prevent it happening in the future.
Lisbet I did Taxol for six months the first few infusions I told the nurse I didn't want the pre meds and it went well for two infusions then I had a reaction was bad. I loved the steroids I had so much energy on the second day I got all the housework done.
So could you ladies send me some good vibes tomorrow at 8:45 I see my onc and find out what the chemo and vitamin c infusions managed..
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Z holy cow what a mix up. You need to do a reset you are doing the right thing. Two of my close horsey friends in Oregon died today. The two had been friends since college over forty years. I find it so sad cancer is worth any fight you can muster.
Jennifer I have really bad veins in my leg looks like a road map so I worry about clots all the time too glad you got it sorted with meds they will prevent it happening in the future.
Lisbet I did Taxol for six months the first few infusions I told the nurse I didn't want the pre meds and it went well for two infusions then I had a reaction was bad. I loved the steroids I had so much energy on the second day I got all the housework done.
So could you ladies send me some good vibes tomorrow at 8:45 I see my onc and find out what the chemo and vitamin c infusions managed..
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