My Husband, My Life, My Love, My Family, My Cancer

BevJen

Candy,

Well, the good thing is that you MO is at least thinking about your options, and is bringing your case to the liver tumor board.

When my liver mets were discovered in May 2019, I immediately began reading up on local liver treatments -- before I was even biopsied. As I was undergoing the biopsy, I asked the IR who was doing it what he thought about local liver treatments. He said enthusiastically -- yes, we do them all the time. Then he asked me who my MO was -- when I told him, he said -- she won't go for it. She never sends us people for local liver treatment. And then he made some comment about she "wouldn't allow it." That set me off big time. I ended up switching MOs shortly after that for a number of reasons, but when I started with my current MO, she said -- well, we usually like to do systemic treatments, but if the liver tumor board comes up with some sort of solution, sure, that would be an option.

I suspect that part of the two different opinions was that the two docs were educated multiple years apart. And also, interventional radiology, as I understand it, wasn't really that developed until relatively recently. Now I read everyday about some new technique that is being used in IR and helping patients out.

candy-678

BevJen- True, good that my MO is considering it. First thing she said, when telling me of the small changes, was I had 3 options now--- 1. keep on same treatment and rescan in 2 months versus 3 months to see if any more growth 2. Increase Ibrance from 75mg to 100mg or 3. Switch treatment meds altogether. The thing that makes me wonder is, after she spoke I then started talking and I asked about testing for mutations, esp ESR mutation, and then I asked her how she felt about local therapies. So I brought up the mutation testing and the local treatments, not her. If I didn't know to ask, would she have then mentioned them as options later in the discussion? After I started discussing my thoughts, then she seemed more open to discussing further options--- liver tumor board, liver resection due to the placement of my tumors, etc. It is like since I have some knowledge about this stuff, she then started thinking about possibilities.

booboo1

This is an enormously helpful discussion. Candy, I am so glad you brought this to the living room because who knows when we will all face the same fork in the road. I am not sure yet whether my liver has been affected—I’ll know more after my scan in April. But again, this kind of discussion helps all of us. I would never know to ask about the different treatment options. BevJen, you are very knowledgeable and lend a great deal to these discussions.

Micmel

Today very grey outside again. Ugh. Got my first shingles shot. Gotta go back in two to six months for the booster. Figured that’s something I don’t want. Checking out some movies on Netflix. I’m watching unbelievable. It’s very good. Hope everyone else is chilling.

mara51506

I watched unbelievable and it was a good series.

I chilled out at home today, did no exercise but just did survey stuff, youtube and my soap. Enjoyable day at that.

Sunshine99

mel, I got my shingles shot on March 4th. The shot wasn't a big deal, but I did get a big bruised lump on my arm. It was pretty uncomfortable to lay on that side. Then I remembered about Arinica gel. I used that after a couple of days, and it seemed to help the bruising and swelling. I took my usual Tylenol PM that night, but the arm was still sore. The nurse who gave me the shot told me to take a deep breath, and said it might hurt a bit.

Nope, didn't hurt a bit. I didn't tell her that I'm a cancer patient and am very used to getting needles bigger than that one stuck in me every month.

Glad you got your shot. My MO said that the shingles shot was more important than the flu shot. I'll see her next Wednesday after my Monday scans and will try to make the appointments for my COVID vaccine.

mara51506

I was told by a nurse one time getting the flu shot that I should swing my arm around to avoid the usual arm pain. It has always worked for me. Would imagine other vaccines would be the same if I ever get one.

illimae

I watched unbelievable too and really enjoyed it, I’m familiar with the detectives front other British crime shows I watch, sad there weren’t more to watch.

Micmel, you’ll be pleased to know that I am chilling as we speak

Pots

Thought I should let you know that marianelizabeth passed away earlier this week. Many of you knew her from her posts and blog. She will be sadly missed. I didn't know her for very long but she became a MBC sister to me as we walked along our treatment journey. Rest In Peace Marian

illimae

Pots, nice to see again you even if it is to share sad news. Thank you for letting us know.

RIP Marianelizabeth

Tanya_Djamila

Thanks Pots. Marianelizabeth farewell.

Tanya

Micmel

Oh No!!!!!!!!!!!!! She was one of the people who would plop down on the couch. She would visit a lot. Oh my goodness I’m so sad. No more pain my friend. You’re free from everything, we will never forget you. Dear sweet sister.

Pots ty for letting. Us know. It’s hard to just wonder all the time. Good to see you here. Hugs.

Micmel

sunshine you're not kidding. Wow the bumpy bruise I have today. Ouch. Looks like a big bullseye. How long till it went down?. I have enough going on. Just don't want shingles. Ever.

mara51506

Sorry to hear about marianelizabeth's passing, never good to hear about one of our own passing away, sorry to everyone here and her family and friends.

Woke up to a big cloudy and gray sky. Starting off the day with some 10 min walks on the treadmill. Not really feeling the outside until it possibly brightens up, cooler than it was but I don't mind as the apartment was hot due to heat still being on, I don't control it either. Had windows open and fans going but still pretty warm until last night. As far as the 10 min walks, going to do them every 20 mins until I reach my step goal. Wearing my over the shoulder small bag to hold the phone as I walk. My phone is my pedometer. Hopefully I can walk away the depressive mood wanting to claim me today. Might have to mix up some laundry concoctions to make me happy.

Sunshine99

mel, the bullseye is right! I think it was sore for about a week. The bruise took a couple of weeks to go away. It got less sore, but I don't know if that was from the arnica gel.

It's so sad to hear about losing another sister. Makes me want to cry - or just check out and be done with this. But, that being said, I'm thankful for today. We have a mixture of sun, clouds, and a bit of rain. We get excited about rain in San Diego. "Hey, we're supposed to get almost a quarter of an inch!!! WOW!!! Can you believe it???" Yeah, I know. Go ahead and roll your eyes - haha. This rainfall was predicted to be 0.07".

mara51506

Would not roll my eyes at hoping for rain when you obviously need it a lot of times. I don't mind the rain myself either since it helps with leaves coming out and grass greening up after the winter and being brown coloured.

Rosie24

Sorry to hear of Marianelizabeth’s passing. I remember her from this thread and she was always kind and encouraging.

Elderberry

Pots: thanks for passing on this sad news to the rest of us. I am glad I got to meet her that one time when we gathered together at the Cactus Club. I went back afterwards and read a lot of her old blogs. She led a full and remarkable life. Fly away free, Marian.

mara and sunshine: I used to work at an immunization clinic. Not as a nurse. I was told that a more extreme reaction to a vaccine usually indicates a really good response to that vaccine. Take heart.

As for impending rain; moth, pots and I can attest that we seldom pray for rain. But our main past time here is to bitch about the weather, especially when it gets very hot --- for us

dutchiris

Thank you for sharing the news of Marian's passing. I met her in person one time before either of us had MBC. We chatted and had tea near a lake near where I live. She was visiting friends. RIP Maian.

mara51506

Thank you for the information Elderberry. Just hope I get the vaccine before September, I know this will not mean normal life immediately but should cut down on hospital visits. It is the variants that are predominantly infecting people and the roll out here is much slower. Younger people are also winding up in ICU now that most older people in the province have had it. What I also do not know is if vaccinated people are still considered infectious still. I have not heard a lot about that part of things.

candy-678

Hello all.

Well I have been getting out a LITTLE more. Meaning, I was doing things like ordering my library books online and doing curbside pickup. This week I went into the library--- weekday morning, so not busy. And I went into a different dollar store this week to look for a specific item I have not been able to get with my Walmart online shopping or the one dollar store I have been going to periodically. Yet again, weekday morning so not busy. I am going to do small things like that now. Still not church services--- don't feel safe with 50 people in one room, some without masks, singing, laughing, and hugging. So still church online. And no restaurants---- cannot wear masks and lots of talking. But ease into some activity. I have been vaccinated (both vaccines), but the numbers are going back up Nationwide and in my State. And I have some friends/family that are still vaccine wary. ???? Get the vaccine already !!!!

I have been reading up on the various local therapies for liver mets. I do not know what the liver tumor board will advise for me, or what my cancer center is capable of doing, but I want a basic understanding of the various treatments. And I am making a list of questions for my MO appt. I jot them down as I think of them.

I had a Palliative Care Zoom meeting on Thursday. Discussed everything with them. The Palliative Care doctor did verify that this is "progression". My MO did not use the term per se, just said "small, steady increases". We discussed my thoughts. They recommended Yoga for my pains. They are going to message me a link for a Yoga class online. They said I should check with my previous physical therapy person I have used in the past to ask about Covid precautions and if the staff has had their vaccines. Maybe restart some PT if I think it would be Covid safe. Next Palliative Care meeting after I meet with MO and that way we will know the plan going forward.

My thoughts are with you all. I am so glad I found you guys.

Micmel

sending you hugs candy!!!

mara51506

I'm very sorry that they had to confirm progression. It just really sucks but what I do like that you do and are still doing is research on questions that you want to ask about it and other treatment options. You seem to be organized in the face of this and my hat is off to you for that reason.

Did 6000 steps, one walk and then grocery shopping and drive with older DB and SIL which was nice. Got some more vegan types of food, not switching totally but I have really been enjoying the beefless ground and they are seasoned and taste like meat except without all the calories and fat. They were sold out of the beefless ground but picked up a bean burger and a chicken and rice vegan dish. We will see how it tastes. Only problem is that it is expensive.

candy-678

Mara- That is how I cope. On Monday after my MO appt I was numb. Just numb. I knew the day was coming for progression, but still.... Thank God it was small progression, not explosion.

Then on Tuesday I started pulling out the paper and pen and sat down to my computer. Time to do some reading on here and elsewhere and making notes. Then making a list of questions for the doctor. My way of being in control. Haha. What control?! But something I can do.

runor

Ladies, I am asking for pocket duty. I am scared. Maybe over-reacting. But when I am done typing this my husband will take me to the emergency room. I have called the hospital, I have called 811, they have advised an ambulance but I really don't feel like that, so I guess it's a ride with Hub.

Here's what's going on. Have been very constipated for the past 3 days, not unusual for me with tamox. Last night got backache. Bad. So bad I couldn't sleep. All day my back ached. As day went on it got worse. I began to feel nauseated. Figure it's from the unrelenting back pain. 

As I was trying to go to the bathroom noticed a tiny spot of something coloured in my underwear and, wipe, slightly blood tinged mucus. Hmmm. No period since 2017. I did manage to go to the bathroom but this was immediately followed by bleeding. Lots of bleeding. Bright red, not old and brown like period blood. Rushing to get to the toilet it landed on the floor and toilet seat. It won't stop. I have changed pads about 4 times in the last hour. Worst (and only) period since July 2017. 

You know where my mind is. My heart is pounding, my hands are shaking. I want to cry. I do NOT know what they're going to do for me in the hospital. I'll sit there by myself while Hub sits in the truck. There are no people to do scans at this time of night on a Saturday. But the 811 lady said that if I lose too much blood I could get into trouble. Shit. What the hell. I am freaking out. I feel like puking. Sorry to vent but I needed to get this off my chest.  

molliefish

hang in there girl, we will be thinking of you and hoping it’s a polyp or fibroid thinning related to hormone use... xoxox

BevJen

Runor,

Thinking of you. Hope you have found an answer and that you are soon doing well.

Kittykat9876

Hi Runor, just checking in to see how you're faring, I hope they have managed to get you some answers and ease your mind a little.

dutchiris

Runor, I am in your pocket. I hope you have some answers and your pain under control.

candy-678

Runor- Check in when you can. Hope you are ok.