How are people with liver mets doing?
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Wow, I am completely overwhelmed by your responses. Am I ever glad I hoped on this ship. You all lift me so much and offer great advice. It has been a whirlwind since my last post. I developed a high fever the next day and it still rears its ugly head unexpectedly, now climbing as high as 103+ degrees. Currently it is down again and I am feeling fine. Been admitted since yesterday afternoon. No sign of infection though we await results from the 48 hour cultures. If infection is ruled out. This may actually be good news. Sometimes when tumor cells die rapidly fever results. Here's hoping.
I wish to reply to so many of you but my window of fever free is unknown. More later, but until then thinking of you all. And Mom, how awful. I just can't believe it.
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NKB - The new drug approved a day ago, I would do that. I declined the Kisqali when the Ibrance failed to continue working. My onc then had been encouraging me to go to trials for the new drugs - he had high hopes. He wanted to keep me off chemo longer. But I wanted to stay close to him / home / and NOT have the catheter port run which for trials was required when one is a turnip. With the excessive coughing, blacking out and fall risk, that catheter to the heart is not suggested.
Kaaborg - sounds like you are resting well. Yes, the cancer cells dying can create the fever, flu symptoms, have had those. Even pain in local spots. And sometimes numbers go up before they go down. My oncologist said to be last visit, hope is free and I have a lot of hope.
Mom / Dani - Abhorrent and unsettling what you have been through.
This reminded me of my mother's stay in intensive care / hospice which was set up for her on the cancer floor, private room. She could not be in hospice w/o the intensive care, too much for any staff. One night, about two weeks before she went into the coma and died, two well-meaning but very stupid aides got her out of bed and walked her to the bathroom and DROPPED her.
- She had NOT been out of bed for three months.
- She could not speak, she had a breathing tube at her throat.
- She had a catheter and she was on a nutritional feed. Surprise surprise!
- She was on a palliative micro dose chemo IV and other IVs so they had to be hooked up all the time.
That was when I took up guard duty day and night. All hell broke loose when my brother gathered the hospital director, head nurse and the oncologist to "discuss" the happening. I do not know what happened to the aides. But that incident was right up there with some others we had at the same hospital and will never revisit.Lisbet - are you still reeling?
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Got my results today. Not good news - progression to liver and peritoneal carcinomatosis. Moving on to Epirubicin chemo as of next week.
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Linda, I am so sorry that you received news of progression. I know it is not what you had hoped for. Your MO knows your case well, and it is good that you already have a plan in place for your next line of treatment. I am not familiar with Epirubicin and will have to read about it. Do you know if it is similar to doxil (doxorubicin)? I am lifting you up in prayer. I hope that Epirubicin quickly stops and destroys the cancer cells and brings you relief from the pain, fatigue, and discomfort you have been experiencing. You remain in my thoughts.
Hugs and prayers, Lynne
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Linda - your dx sent me to reading and learn more. I found a link w some info. Interesting that a few women said their PETs did not reveal the peritoneal carcinoma spread. And their labs were normal... if anyone wants further facts and experiences.... ALOS a CT alone can show strings and haziness. links here https://community.breastcancer.org/forum/106/topic... and here had some important information.... https://community.breastcancer.org/forum/8/topics/... . and a huge thread here https://community.breastcancer.org/forum/8/topics/...
Anyway, I wanted to post this now so if you want to check out these you have them instead of hunting around.
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Thank you so much Lynne. Both Doxil and Epirubicin are anthracylines. It's not commonly used in the U.S. from what I can see on BCO. My MO has had good success with it on other patients so we'll see. It can cause congestive heart failure but I had a test in nuclear medicine to see if my heart can withstand it and everything is fine. SEs are similar to Taxol except nausea can be worse - just what I need! Hugs right back at you!
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Bluebird - Thank you! Mine showed up on CT scan but not on abdominal ultrasound.
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Linda, I really hate that you got the news of progression, certainly wish none of us would ever hear that word again. I'm praying your new treatment kicks it back to the curb. Thoughts and prayers are with you.
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Linda so sorry about your progression. I hope your next treatment is easy on you and knocks back your BC
Babs
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kaayborg you have been in my thoughts (you all have been). I am confident that the treatment is working for you and you will have many more years with your family! We all deserve a long healthy life! Thank you everyone for posting I read everyday and I am just grateful for all the information you provide. Progression is so defeating. I had progression in January of this year. I have my next CT scan on Oct 4th - anxious again as we all are! My liver mets show up on CT scan and not ultrasound - even a fancy contrast ultrasound couldn't see them (I had thought this meant they were gone - nope). Gentle hugs to everyone!
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Linda - vraiment desole to read your progression.
Your new med is called Ellence in the US (Pfizer), but as you said not commonly used here. Please keep us updated. I have been on a virtual abemaciclib high since it was officially approved this week. I would try it with Faslodex (again) if my onc permits. Big question is what my scans/numbers will look like at end of October/first week of November. Looking at X and/or continuing on A train a little longer if TMs are still dropping. My drug rash is less severe with Decadron, but it keeps me up all night after infusion. Need to channel that energy into some more online research. Kaay - wishing you the best support possible at the hospital and moving to Havalen. Agree our thread has the best ladies. Bluebird your mom's story was heartbreaking. Momatt - your story made me glad I live near UCLA rather than Dana Farber. Have you considered some formal action? If their collective negligence harmed Dani, they are liable. Z - thinking of you in Japan this weekend.
(())C
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Bluebird, 50sgirl, Margarita, JFL, Linda - and others that I might have forgotten: Thank you, thank you so much for taking the time to answer me!
Unfortunately I cannot get another doctor. I called the hospital and asked for another doctor. The nurse I talked to said that that might not be possible. Decisions about treatments are made collectively by a group of oncologists every week and then one is assigned 'to deliver the message'. The nurse agreed that not all patient/doctor combination might be a success. But unfortunately this cannot be changed. I can only hope for another one next time I'm having an appointment.
I asked her about the xeloda. She confirmed that this is used in DK and would ask the doctor why I wasn't offered this drug. She called me back yesterday and said that xeloda would be 'down the line'. Right now taxol or epirubicin would be the standard procedure (which they apparently have to follow). Should I want to discuss the choice of drug I would need a new appointment (which would take some time to get) and I probably would have to sign some documents or something like that. I'm not sure I understand this. Is taxol the stronger one - because the progression is so huge - or is xeloda the stronger one since it's 'down the line'? Or maybe there is a difference in standards in DK and US. I don't know.
What's worse - as I read through the papers on the drugs, I discovered that I'm not allowed to drive on the day that I get the taxol. That would make it impossible for me. I live far out in the country, there is no public transportation - and I have animals that need to be taken care of. I have no one to drive me. I really hope I can get a dispensation for this!
One question at the moment on taxol. Just read an article that most women gain quite a lot of weight on breast-cancer chemo. Maybe a small problem, but I just find it so scary that after loosing my breast, hair, eyebrows and lashes and all the other SE, I might also gain some kilos. Those of you on taxol or epirubicin - have you gained a lot of weight on the drug?
Other scary SE that I have to look forward to?
Linda, so sorry to read about your progression. It seems that this is a disease where the good news is absolutely lacking!0 -
Oh just another question. When talking about drug choices with the doctor, I said that I was in the understanding that there would be a lot of drugs for me down the line. He answered that unfortunately there wasn't. Because I've done with AI's there are only a few left. It would have been a different matter had I been hormone negative. Then I would have much more choices and the prognosis would also be much better. Is this really true?
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lisbet- contact the American cancer Society. They have services that can provide you a ride called road to recovery. They also have patient navigators who might be able to help you coordinate other parts of your treatment.
You are in my thoughts
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Lisbet is the system in Denmark not the same as here in Germany? If so, we get taxis provided to get to and from chemo or radiotherapy, maybe worth asking about?
I did put on a little weight with taxol, but not much, not enough to worry about. Taxol, or the pre meds, actually made me feel quite well and energetic, it was easily tolerable.
Which Al's have you already done?
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Lisbet, I am both shocked and disappointed that you cannot get a second opinion. I naively assumed that it was standard practice in most European countries. I do understand that the doctor you met with is only delivering the message that was agreed upon by the entire group of physicians. Although he did not deliver the message with tact or compassion, at least you know that the decision wasn't made in a vacuum. I have not yet received Xeloda or taxol, but it is my understanding that taxol is a stronger drug that can attack cancer cells more quickly than Xeloda. That, I am sure, is an oversimplification, but there are people on these boards who have taxol to get the cancer cells under control, then move on to Xeloda or some other treatment. There are others for whom Xeloda has failed, and they move on to taxol. What I am trying to say is that taxol could make sense for you right now since you saw significant progression in a relatively short period of time. Many people tolerate taxol well. I must say that I am surprised that you were told that there are more treatments available for people with hormone negative tumors. I believe that is not true. Women who are triple negative do not have as many options. Do you have a copy of Bestbird's free guide to MBC? It is a comprehensive guide that she compiled, and it describes available treatments for different types of MBC and their side effects. Now, on to the issue of transportation. If the taxi service mentioned by Blume is not available in Denmark, I wonder if there are any volunteer organizations that provide transportation services to cancer patients' appointments for treatment. There are such organizations here in the U.S., and volunteers do provide rides to patients who cannot drive themselves. Your cancer center should be aware of any such services or organizations available in Denmark. If not, perhaps you can reach out to a church organization or a cancer society in your country. I hate to think that you would be unable to receive treatment simply because you have no transportation. I wish I could fly to Denmark and help you through this difficult maze of obstacles facing you. I feel helpless here. I obviously have taken for granted all the services and referrals available at my cancer center. I am praying that you find solutions to all the issues facing you.
Hugs and prayers, Lynne
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Leftfood - I'm in DK, Europe. So ACS can not help me here.
50sgirl: I'm probably not able to get a second opinion in a very short time. I'm worried that the metastases kind of grew 15-20 times or more from June to Sept 18th. That kind of shows me that I have to act very quickly. This shit seems to be exploding! I was shown the scan-pictures and they definitely didn't look good. Scaring!
I don't know what to do about transportation. The nurse insinuated that I might be legible for home transport as I might be drugged by the chemo. But I would have to arrange the transport to the hospital myself or have someone drive me. However, I don't know anybody in the nearby who can drive me. My neighbors are at work and my friends and family are not living in this region. Churches don't do this in DK - and I have never heard of any organizations that do transportation for sick people (except the hospital-transport, but it seems I can only get home-transport). I really don't know what to do. I must find out next week and call the hospital again.
However, it sounds less frightening that BLUME did not have too many SE. I guess the onc just mentioned all the SE so I would be prepared, but I got so scared when he said I must be prepared for hospitalization from time to time due to fever - and then heavy antibiotic. Permanent neurological damages to hands and feet, permanent hair loss (because I will have this drug for the rest of my life - or move to another chemo when it stops working, arthralgia, weakness, kidney damage, nausea and vomiting. Coming home I actually was considering - and still am - if it's worth it. If the disease works so quickly I might just die naturally and hopefully have a couple of good months before I get sick.
I know it's sounds very depressed, but I really don't know what to think after the conversation with the doctor and the nurses. Everything seem so impossible. I'm not really depressed - just so confused and yes, very sad that everything seems to end this way and so quickly. I was so relieved when I first skimmed through these forums that a lot of stage 4 women seem to live relatively good lives for some years. But of course some also only get a few months. That was before I learned about the progression. I believe I now have to be prepared for a short time when I consider the tumor growth in my liver and try to figure out how best to spend the time.
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50sgirl - where can I get this free guide to MBC?
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Lisbet54- the MBC guide is very useful and informative. see page one of this stage iv forum and you will see the offer from bestbird. send her an email and she will email it to you.
I echo 50sgirl in feeling helpless here to lend you a hand with transportation. It makes me realize that as flawed as our health system is- we have options and help from organizations and churches esp if you are not too poor or have good outreach skills.
I did Taxol as an initial chemo after some other harsh ones in 2012. I already had lost my hair from the other chemo- and actually my hair started growing back while on Taxol- I think something like 13% of people don't lose their hair on taxol? I did get some nerve damage in my feet and shoes were pretty uncomfortable for about a year. Ice packs may help that. I also was allergic to Taxol and had to do lots of steroids to manage it-I had 6 months of chemo all together and tried very hard not to gain weight- I still gained 15#, but, lost it with hard work afterwards. Your metabolism is slowed down by the chemo and also the steroids cause some weight gain, I don't remember which chemo caused most of the weight gain. I walked every day.
Do you have a relative who could stay with you? Could you hire someone to drive you and help with the animals while you see how things go?
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Lisbet, Here is the link to Bestbird's thread.
https://community.breastcancer.org/forum/8/topics/831507
From what I have read and what Blume has said, most people do not get all the side effects that your doctor described to you. Most never end up being hospitalized. I am sure that others here will confirm that. There are few, if any, who would say that the treatment was not worth doing. The chemotherapy given to women with Stage IV bc is not as strong as chemo given to people with lower stages. Some people do suffer with nausea and/or vomiting, but it can usually be controlled by medication. It is possible to maintain a good quality of life. There is a thread about taxol where you can find information and ask questions of people who are receiving that treatment. The link is:
https://community.breastcancer.org/forum/8/topics/790290
I hope these links work.
It concerns me that you have treatments that have the potential of extending your life for quite a while and yet it seems difficult for you to get to the treatment center to receive it. I don't want you to give up. I believe that taxol, although no picnic, is not nearly as bad as the doctor led you to believe. We need to help you find a plan to get where you need to be for the blood tests and chemo.
Lynne
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Nkb - Thank you for taking the time to answer. Wow - such side effects - it definitely scares me but I appreciate that you're very honest about it. I need honest answers before I can make the decision. As you describe it, I'm not sure I want to do this to my body! I have always been very much opposed to chemo - and fortunately it has never been put on the table until now!
I have always taken such good care of my body. If it's going to be destroyed, I don't want to do it myself. Of course I know that cancer destroys it. But that's something else - I have done all that I could to get rid of it and I didn't invite it. I don't smoke, don't drink alcohol, exercise and live very very healthy. Deliberately doing to my body what you're describing taxol did to you: nerve damage, destroyed metabolism etc. That really puts me in doubt.
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Lisbet - I only have one unique thought. Could you drive yourself and engage a neighbour to do the chores for the evening? The need for a place to stay could be through the center or a cancer network while you are in the city. Then you drive yourself home.
I see you have a lot of good info coming at you, that's wonderful. Food for thought.
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Z that went fast wow you are really there. Will you be staying in the hospital in the four weeks . This is very exciting and keep those pics coming
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lisbet54,
Please do not give up. I am going to take a guess here but I suspect the MO you saw is new to the profession and has not figure out how to address you. I also suspect he has not learned how to sit at the table and discuss and advocate for you. I have been on chemo, oral chemo, and hormones and find that all drugs, including aspirin and acetaminophen, have side effects. I just look at those side effects as a simple inconvenience and keep moving on.
Denmark does have a Denmark Cancer Society and they do offer support for cancer patients. There phone number is +45 8030 1030. They are open every day from 9-21 and on Saturday and Sundays 12-17. https://www.cancer.dk/
I will keep you in my prayers. Please let us know how this works out for you.
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Lisbet, I just want to make sure that you saw the links that I posted for you. It looks like you and I posted at the same time, and my message ended up above yours
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Hi Lisbet54,
Have you contacted the Danish Cancer Society Hotline to see if they have any suggestions for assistance? Here is their web page link: http://donaid.dk/en/the-danish-cancer-society-the-danish-cancer-hotline/
Wishing you the best of luck!
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I wonder if it's one of the pre-meds that would make you too sleepy to drive home. Sometimes they use Ativan or something similar, if so you could ask your MO or nurse to make an exception for you. I know they have to give you steroids with taxal but they don't make you sleepy. Did they give you a list of drugs, including pre-meds?
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Lisbet54- I'm sorry that you got the idea that I had a lot of side effects- I was trying to let you know that it is totally manageable. The metabolism goes back to normal when you finish the drug- I do understand where you are coming from with chemo- before I got cancer I was almost afraid of Tylenol! I'm still here and doing well 5 years later! It is a hard choice I understand-thinking of you!
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Lisbet, the no driving thing is something common for cancer centers to say as a blanket statement - easier than trying to get specific - but it is really only aimed at the premeds that can make you drousy/loopy. I drive myself to and from chemo all the time, as I currently don't take any of those premeds. If my memory serves me correctly, Taxol is usually given with Decradron (steroid/anti-allergic), Zofran (anti-nausea), Benedryl (anti-allergic) and Ativan (anti-anxiety, mild secondary anti-nasea effect). Of those, the two culprits that would prohibit driving are Benedryl and Ativan. I agree with Grannax, you may be able to negotiate out of getting Ativan. I doubt they would let you skip the Benedryl your first dose but possibly for a later dose if you don't show any signs of allergy to the drug. I have been able to convince them to forego the Ativan, Benedryl and/or Decadron at times. I feel for you - I had to scramble to find someone to take me to every chemo appointment when I was early stage and it was hard as I was single, new to the city and my family lived on the other side of the country at the time.
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Lisbet don't give up, taxol can work incredibly well quickly. The side effects the doctor told you about are just a list of things that could possibly occur. He should have finished by telling you that you will most likely not get problems with most of these. You very likely will get some side effects but they are manageable and many people get few or even no effects. I was also dreading chemo so much before starting taxol, but after the first session those fears just disappeared. Funny, but those pre meds actually made me feel so good I even began to look forward to getting them! Please, give it a go, hope for the best and don't expect all the worst side effects that doc mentioned.
Re the second opinion , here it is the same, we have a board of oncologists deciding our treatment. But to get a second opinion I would just visit another hospital. However, to be honest, I never think it worthwhile here knowing I have about 10 oncologists discussing the treatment at the weekly meeting. I guess it is the same for you, just the doctor that delivered the message was not good. The board of oncologists meeting weekly will have fully discussed your case and come up with their agreed strategy. I think you can be assured your treatment is based on more than 1 doctors opinion, in fact based on more than even a second opinion.
On the transport, please do call the Danish cancer society number given above. Call them to discuss your transport problems, but also to discuss your other worries about treatment, the doctor, etc. It should be very likely the hospital will give you transport home, make sure you discuss your problems and worries about getting to and from the chemo with your nurse also, they are there to help.
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