Scan results on liver not great

[Wildcat1]

I received the results of my CT today and it stated

There is significant interval progression of bilobar hepatic metastases with increase in size as well as interval development of new lesions, many of the metastatic lesions now confluent and difficult to measure and compare.

Index lesion in the left lobe of the liver near the dome best seen on image 130 and series 5 now measures 4.4 x 2.9 cm as compared to previous 2.3 x 1.4 cm on similar axial image.

Relatively discrete lesion in the right lobe of the liver best seen on image 125 series 5 measures 2.6 x 1.9 cm, new since previous.

Also seen is interval enlargement of the liver due to metastatic burden, now measuring 18.8 cm vertically as compared to previous 17.3 cm. The liver partially wraps around the spleen as previous.

This is my 4th line of treatment in a year. Currently on Xeloda. My bones responded well to it. My pain in the liver went away and so did my bloatiness.

Does anyone know if the Y90 or HAI treatment will help with this. I am beside myself. Only a few people know if my issue. I was so trying not to have chemo until my daughter went to college due to her anxiety I haven’t told her. I’m afraid she won’t go when I tell her.

Any input would be helpful

[blms]

Well mine is similar. Entire liver with Mets and I have had two measurable lesions in my liver as well. But the liver is just filled with cancer as well as my peritoneum and my omentum. I am on IV Taxol reduced dose once a week for three weeks on one week off. After three rounds which would’ve been nine treatments in three months, my cancer shrunk across-the-board at least 30%. I have to tell you I feel so much better on Taxol than I ever did on the I Brandts the other stuff that I’ve taken. I was not wanting to go do this initially but when I saw the actual scans with my own eyes back a few months ago and had extended abdomen from the site is the in. I was not wanting to go do this initially but when I saw the actual scans with my own eyes back a few months ago and had extended abdomen from the Cancer ascites throughout my abdomen, I decided yes that’s what I had to do an agreed to go Forth with it. I did also have a port put in this time And I am happy with that I suppose of them having to take so much extra time and work with my veins, which are limited at this point after 24 years of this treatment issues. So bottom line is, I think you’ll be pleasantly surprised if you have to go on IV taxol as to how well tolerated it actually is. Funny I was so against it, and having bad experience with Taxol back in the day 24 years ago with at least double the dose what I’m getting now I was not looking forward to it I was very unhappy in the beginning. But I’ve come to find out it’s not bad treatment at all. I did get rid of all my liver pain which I had from nerves shooting up to my shoulder blade in my back and across across my back as well I haven’t had that for months now. I’m not sure how much the treatment is helping with my bones because I haven’t had a bone scan for at least three or four months. But I’m much more concerned about my liver and Abdomen and then I am my bones. I feel dramatically better than I did, actually there’s no comparison because I felt horrendous in March

[Wildcat1 in reply to blms]

I don’t feel bad at all. I’m not against going on IV chemo I just wanted to get my daughter to college before I had to start. How quickly did your onc start your IV chemo.

[blms in reply to Wildcat1]

Once it spread to my liver, she wanted taxol but I said no i would try to go bak on ibrance with faslodex. But after 2 months it all got a lot worse and I then saw the scans and could see the change which was alarming and I was then ready and willing to save my life, at least for the time being! I am glad I did as I felt so very much physically better and am able to act like myself and do what I want. I find that as no one can go into infusion with you anymore, that my family is not really negatively impacted by the fact that I am on IV chemo as I seem semi normal most of the time and they see that and it helps them feel more normal, etc.m Where do you live?

[NShaft in reply to blms]

Do you lose your hair on Taxol?

[blms in reply to NShaft]

Well my hair thinned alot. In fact I would run my hands through my hair and throw hair down all day long. Then one night I put it up to not bother me while I slept and not have me or my husband eat hair all night long. When I woke up in AM, my hair was mounded on top of my head in a nest! I could not untangle it with a brush or shampoo or conditioner. So, I called up my son in law and said, " cut this crap off my head. So, now Im bald and honestly do not care at all. I have wig when I want to use them, lots of baseball hats as well as head scarfs that are colorful, etc. I may be in the minority with not caring about hair on my head, but I really don't. Plus its summer and hot. I do use cold packs on my feet and hands to try and ward off neuropathy.

[JPutt in reply to NShaft]

Just to say I had several cycles of weekly taxol and didn't lose any hair at all (I did use the cold cap). I also have to say it didn't work for me - but I agree it was very easy to tolerate. I am now on Eribulin - which DOES appear to be working (fingers crossed - the scan next week will confirm or not). My hair is thinning on that but not lost entirely. I have cut it short and think can get away with it for now. Fewer women lose hair on weekly taxol than the heavy dose, I understand. But do try the cold cap? I have always found it effective. I didn't lose all my hair first time around either - back in 2015. good luck x

[Wildcat1 in reply to JPutt]

Hope your scans go well

[JPutt in reply to Wildcat1]

thank you x a little nervous tho CA153 has dropped so hope that a good sign... x

[blms in reply to Wildcat1]

Well I needed a port first then two weeks later. I assume your daughter will go to school August. My guess is that might be a little bit too late to start. Keep me informed

[blms]

I also can relate to children, going off to school, and dealing with this very difficult situation. I understand for many reasons. I’ve been dealing with cancer since I was five years old people being sick and dying in my immediate family. So I’ve been on both sides as I was quite young at the time and. And when my mother was first diagnosed with breast cancer I was 15. That was extremely hard on me at that age.I also, having four children, understand your position with your daughter going off to school. But of course as you know it is your job to encourage her to go live her life. Of course that’s easier said than done. I’m an Italian mom! It’s all about the kids and family. At least we now will know how to use and frequently do you use zoom to communicate so you can assure your daughter that she’ll be able to communicated with her in a couple of sessions the whole time she’s at school as much as she wants. Is she going to school far away?

[Wildcat1 in reply to blms]

She’s only 1 1/2 hours away. Of course I will tell her to live her life. But she’s very attached to me. I don’t want to ruin her college experience.

[Mary115 in reply to Wildcat1]

I am so sorry that you are dealing with this latest development. It is so hard. You are such a solid mother with your first reaction being concern for your daughter.

There is assistance available to help you get that daughter of yours off to college which will give you both the boost which you will need. Of course teen books have helped some parents and their teen.

Books for Teens with Loved a One with Cancer

I found it helpful to read the books myself first, and then be available for discussion if wanted, or to have a second person my teens could talk to:

What About Me?: A Booklet for Teenage Children of Cancer Patients

by Linda Leopold Strauss

To order, call 513-731-3346

Will I Get Breast Cancer?: Questions and Answers for Teenage Girls

by Carole Vogel

Both Sides Now

by Ruth Pennebaker

When Your Parent Has Cancer: A Guide for Teens

National Cancer Institute

A hospital social worker should be able to give you resources for a child attending college when a parent has cancer. In the meantime I liked this article for myself to read and to use as a resource. Some things resonated. Perhaps something will resonate also with you:

Going to University with a parent who has cancer

thetab.com/uk/2020/02/21/un...

I also found help through telephoning the American Cancer Society 800.227.2345. I was helped in understanding and telling my young adults about my diagnosis and treatment while encouraging them to do the work of their age and grow in their educational and social endeavors: To care rather than be care givers.

Hope this helps.. I feel for you since this is sooooooo hard and yet we somehow succeed as much as is possible. There are so many more resources for young people dealing with a parent with cancer now than when we were young and we were dealing with a parent or family member.

[blms]

Good that she is that close. I had decided that after my first was farther away and then physical issues with my next two kids when they were in college. One was only 20 minutes away and the other an easy 1.5 hour drive. So, I was able to deal with their sickness MUCH easier. I decided with my last two that they had to be no more than 2 hours away by some form of transportation. It helped alot. We are a really connected family, spending every weekend together even now--well one day over the weekend. I do believe that it will actually make her life a it easier. Is she your only child? If they are talking to you on a regular basis and you seem somewhat normal, they will think there is always a tomorrow--we know that is not the case but it is human nature to think that until you know otherwise . My kids all call me every day to check in which is VERY nice for me.

[barbarac76]

Hi.

I’m so sorry you’re going through this. I can relate to your overwhelming concern for your daughter. My biggest struggle in having MBC has been the impact it has and will have on my kids (now young adults) as the cancer progresses.

Let me ask you – has your oncologist ruled out the Afinitor/Exemestane combination? It’s oral. It was my second line of treatment after Letrozole failed. However, I didn’t have issues with cancer in my liver at the time.

I am on Taxol IV now. I started in March after I had progression to my liver while on Xeloda. Like you, I wanted to delay Taxol. I was concerned about how my kids would respond to my hair loss, thinking that my situation was dire. Although my kids know about my MBC, I have chosen not to tell them everything.

Does your daughter know anything about your cancer?

Barbara

[Wildcat1 in reply to barbarac76]

She was in 4th grade with my initial diagnosis and of course she was very young but she totally fell apart. As of now no she does not know anything. I have been leading her little by little. I will discuss w my onc on Friday everything

Afinitor was one of the 4 that did not work for me.

[barbarac76 in reply to Wildcat1]

Sorry, I didn't realize you had been on Afinitor. I hope you and your oncologist come up with a good plan. Sounds like you have a good relationship.

Against everyone's advice, I didn't tell my three kids about my diagnosis for two years. They were starting high school, college, and studying abroad and I just couldn't bring myself to telling them at such pivotal times in their lives. Telling them was the hardest thing I ever did, but after the initial very sad reaction, they adjusted. Since then I've been selective in what I tell them and what I withhold. When I started Taxol (knowing that I would lose my hair because I chose not to use the cold cap), I began wearing chemo scarves while I still had my hair to help them adjust to this new phase of my cancer. It seems like an insignificant, trivial thing, but I think it helped.

I hope your appointment goes well with your oncologist and you get answers about all options.

Barbara

[13plus in reply to Wildcat1]

I totally hear you with the fear of how your daughter will react but the general advice is it’s always better in the long run to be transparent, otherwise their anxiety is ‘what else have you not told them? ‘ My son would’ve been SO upset with me if I had NOT told him (he was a high school senior when the mets were discovered). (First dx when he was 4 and second when he was about 9. )The advice of reaching out to a SW is golden, and I’ve found books/articles also very useful for each age stage to guide me in the conversation. Im very sorry the liver mets haven’t responded to your current treatment but hopefully the next treatment will be really effective!

[Wildcat1]

I have an apt on Friday. My onc and myself are very straight forward w each other. Well if you ever need to talk message me.

[Arisgram]

I'm so, so sorry. I recently had sbrt on two distinct lesions in my liver. I had asked for a consult on y-90 but was told it is more appropriate for widespread liver involvement. I would definitely look into it. From all that I read it seems like a very good treatment. Please know you are in my thoughts and keep us informed as you go forward. I know from experience just how frightening this is. Take this as a big virtual hug, much love, Andi

[Wildcat1 in reply to Arisgram]

Thank you!!

[Wildcat1]

Thank you all for your advice!! I meet with my onc on Friday. She’ll be so happy with me and all of my suggestions and input !! I do have to say she’s very patient with me and answers everything I question.