Choices

claoh

Thank you for the article. lots of good information. I saved it as a favorite on my computer.

Fatigue is the only symptom I told my doctors I had at the very first cancer appointment with the surgeon. Still have some, but take naps whenever it hits and i am able. The least one affecting me is lack of appetite! Still eating very well : )

Hope you had a pleasant 4th of July. Ours was very low key with a little shopping at eating at the food court in the mall. Simple pleasures.

Sadiej

Morning Claoh

Busy week last week, labs and palliative care followed by surgery on Friday to reattach my thumb. That was a long day, from 11:30a until 5:00p, which included prep, surgery and recovery.. Monday I meet with my oncologist, then my first dose of chemo Tuesday I meet with the brain surgeons. I don't know what's entailed there.

How are you doing? Have you decided when you're going to visit your family? I think it's really awesome that you're doing that. Like I said before, you're very strong and amazing.

claoh

Glad to hear from you. I've been thinking of you with chemo restarting Tuesday. I think you are strong and amazing!!! I really don't have a good idea as to what you're facing.

Yes, we have set some dates in September to visit my brothers. We also have short trips in August and October to visit sons. That is my goal right now, not knowing when I'll really start feeling the effects of this critter.

I am looking forward to meeting my palliative doctor and have my phycological exam (?) a week from tomorrow.

Take care. I'll be looking for you, hoping you'll find some time to share what you're going through and possibly even venting frustrations you don't want to share with family.

Sadiej

Day one of chemo. The old familiar buddies, nausea and diarrhea are here to greet me as if old friends LOL. I asked my oncologist all the hard questions about mTNBC, the fact that you're never really cured from it, that what I was going through is just a treatment, and the statistics I saw were from 6 months to two and a half years. She said that she saw it as far as 3 years, so we were statistically close. The other item that she mentioned is that for my case, my metastases are more like little Islands and not like a full-blown metastasis found in mTNBC. I guess that makes for a small ray of hope huh LOL.

This is starting to look like a diary haha.

Tomorrow I have the appointments with the brain surgeon and the brain radiology oncologist. The metastasis in my brain is tiny so I imagine they will just take it out with a gamma knife. I have questions to ask them too, when using the gamma knife there is a chance of minor necrosis to the area where they operated. As I was telling my oncologist, although this is not true 100% of the time I still wonder if they find another and another if I won't end up looking like necrosis swiss cheese LOL. I guess I get to find out tomorrow.

It's nothing else, my diary should help strengthen you on your choice. Each one of us has this walk to walk. I think that by sharing with you as well as others who may read this down the road, it should give a good scenario on whichever way they would choose.

Be at peace my friend

Pat

Sadiej

Hey Claoh.

I mistated the above. My statistical numbers for survival were six to 22 and a half months not years. Got to love the fun. Still up at 2:00 in the morning finally getting my stomach to settle down from the wonderful chemo LOL. Talk to you later.

Pat

claoh

Sad to hear you had chemo reactions again. It is interesting to see both our views and choices to this issue. I had a friend e-mail yesterday which also stated either way, it is not an easy road for an individual to take. How long is this series of chemo for you? No news on this end, just looking forward to Monday's appt with palliative doctor.

Sadiej

Can't wait to see your palliative doctor! You'll have to let me know how that went.

My chemo is a 6 course treatment consisting of two weeks on and one week off. The chemo is one day per week so it's pretty light compared to the last time when I was in everyday getting chemo and probably all my issues that went with it. These guys believe in a rest and recovery time😊 which I really appreciate since they already know how I feel about chemo.

Saw the brain doctors today. Guess we're setting it up for the 21st of this month to do gamma knife operation on my brain. It's really small, 3 mm but they want to get it because as you know triple negative metastasizes quickly. Then in 5 weeks they will take another look to see if anything else crops up. Once they go through that then I will be on a 3-month review to verify nothing else is happening.

I agree with your email friend. Both these views are very interesting and like I said, I really hope that in the future someone will read these and be able to make their own decisions.

Pat

claoh

This really does change a life with all the additional appointments and treatments, and we both deal with some sort of pain/discomfort each day but doing the best we can for some relief.

I do think it would be nice to have someone follow our conversations and perhaps join in also. There is not enough of the open discussion to be found. Did you ever seek and/or find a physical support group that you met with personally?

Sadiej

tnbcfoundation.org was the only site I found but they don't have a message board like they do here. They meet a few times a week online but I really don't see how that helps as far as putting this down in actual words for any future or current people looking for answers. I do believe we're a matched set, with you not getting treatment and me getting treatment. Being open and honest about what's happening to us will help someone someday (I hope). As yet I found no physical support group for tnbc.

I was so angry and frustrated and full of tears last night because of what had happened to my sister who passed a little more than a year ago. She had endometriosis and was going through her OBGYN for cancer treatment. Somehow I don't think that many people understand how dangerous any cancer is. Anyway they operated on her and when she's asked if they got it all out they said they got most of it and they would keep an eye on the remaining cancer. (What the h***. !?!). So anyways it did metastasize to her brain and she went through full head radiation which I totally disagree with. No one should ever ever get full head radiation. That to me is just a death sentence. And it was to her. She died about a month after her one and only treatment. So when I was at the Cleveland Clinic yesterday the radiation oncologist said that he would never give that treatment type to anyone. It was an absolute no no no as far as he was concerned. When I got home I started thinking about it and the more I thought about it the more angry I got.

I really hope that someone reads this and understands that any cancer is not a light thing. If your doctor says they got most of the cancer out I would be running to a new doctor, and if they say they want to do full head radiation I would definitely run to a new doctor.

Ha, I'm angry and tearful even now just thinking about it.

I'll talk to you later. Gotta get myself back under control. 😭

claoh

Hello Sadiej, It was sad to read about your sister. Thank you for sharing your deep feelings.

Today I saw my GP. I actually went to the urgent care portion for a non cancer issue, as I didn't have an appointment, but when she saw my name on the roster, she had her crew pull me into her agenda. I felt so loved that she would do that. I have been saying that at this time I felt in limbo as to who I should be seeking advice from and feel she was so gracious to me.

We discussed what has been happening with my cancer, and she knew of my decision to forego treatment. I know she will be an advocate for me through this. She wants to know how it goes with the palliative doctor next Monday, and is also going to push for me to meet the other palliative doctor who is closer. She had sent a referral to them three weeks ago, and I have made several phone calls without getting a response. She is going to personally contact a rep that comes into the office some times.

She commented that should the cancer get in my bones and/or blood, it will be very painful. Yet, she acknowledged that is why I'm seeking palliative care. I'm doing whatever I can to be prepared. I know I should be getting paper work in order also as to what my desires are as this progresses. Perhaps I'll be able to get those started with palliative doctor.

Life does change. We have scheduled a couple trips by air in the next two months and it's the first time we bought the insurance for a refund if we are unable to make the trip due to health. Two other couples want us to plan a joint trip for a year and a half down the road. I mentioned to my husband that I didn't fell comfortable planning such a trip not knowing what condition I'll be in. Again, he just said "if we proceed, we'll just insure it." That makes it possible to make long term plans without the fear of losing the funds if we can't go.

As I close, I do hope your are feeling well today. Look forward to any note you are able to send.

Sadiej

Hi Claoh

I managed to spend a wonderful weekend with my daughter who came from 16 hours away to spend the weekend as well as my niece and her dad (my sister's family). Give me some good to get some of this out in talking with my daughter who I'm very close with.

This week I have chemo and my brain surgery. Today is chemo and the surgery is on Friday. This will be my second chemo. How are you doing? I'm really glad to see that you're going to be spending your time with your family. I thought about you yesterday while I was with mine. It does the heart good.

Pat

claoh

SOOO happy you got to spend time with family, especially your daughter! It does do the heart good!!

Today I saw the Palliative doctor and a chaplain (as the phycological exam) as the scheduled one was ill. The three of us were in the same room together for 1 1/2 hours discussing my case. We talked about my reasons for the road I've chosen; what is coming down the road and still encouraging me to consider chemo/mas/radiation. In the end it was my decision and I was at peace to stay on the same road, especially since I've set up four visits of family/friend in the next three months. I came away very happy and comforted that they have my back as time and condition progress. They even are connected with the hospice group I've been trying to reach from another angle that is closer to me. Right now I will meet with this doctor once a month to determine how to proceed with pain control. I am still able to avoid pain with low dose of Advil.

Hope your chemo went well today and will be thinking of you on Friday with the surgery.

Sadiej

Hi Claoh

So glad to hear that they have your back! It's good to have people to walk beside you besides something that is simply a typed relationship like yours and mine. Physical relationships are very important especially if you go along in your journey.

Finished up my chemo yesterday and started getting nausea and is splitting headache just as I was leaving CC. Rough night last night, hubby was telling me I was tossing and turning. All I know I was really sick and could only get out the word nausea when he asked how he could help. This morning I woke up still sicker than a dog with a medium headache instead of a pounding one like I had LOL. The other interesting note was I had severe lymphedema on my right arm to the point that CC wanted me to do it tested for DVT. The DVT was negative but as the chemo works on the lymph nodes my swelling is going down. Actually to the point that I couldn't even control my bladder from getting rid of all the extra liquids that had been stored in my arm. Thankfully I believe that part is over lol. Today my arm looks like my other arm so I imagine that was quite a bit of liquid that passed through me. I talked to my nutritionist yesterday and she wants me to get 110 mg of protein in me everyday and suggested drinks that didn't taste like crap but we're protein drinks like premier protein and core power. It's got to be better than the crap they try to give you in a bottle LOL. My husband and daughter will be going out today to search for that as well as other things that they had mentioned yesterday. Today's go for me is simply to get my stomach on your control from the nausea and to get this headache to go away. Guess it's the price you pay if you want to take my path. Hang in there I know we will both the adding to this journey as we go along. It may be me more up front but I am sure that it won't be just me. I kind of feel guilty throwing out all my signs and symptoms and yet I know this isn't about me this is about those who may need to know these things in the future.

Hugs

how he could help

Mashedpot

https://csn.cancer.org/discussion/comment/1706609#Comment_1706609

Hi there. This is my first post. I'm sorry to hear there are so many of us out there with Triple Negative. I too have lobular recurrence in my bones. It has been 28 years since my first diagnosis which was not triple negative.

I'm going to give the chemo a try, but if it spreads, I'm not sure what I'll do. I'm certainly not set on treatment without quality of life.

Thank you for the research article.

Sadiej

https://csn.cancer.org/discussion/comment/1707233#Comment_1707233

Hi Mashedpot

Your situation is very tough. It must be painful for you with it being in your bones. So far mine is only metastasized to my brain and to a general area around my breast. If you'd like, you're more than welcome to join Claoh and me on a thread called choices. Claoh is going without treatment while I am going with treatment. We would love to have you join us on the thread.

Pat

claoh

Hey Sadiej, saw your posts with mashedpot. Hope she joins us with a third reference point and encouragement.

I don't have any new news at the moment. I noticed our last two or three posts are omitted somehow as I know you share about your 1st chemo and brain surgery this Friday. I shared about my visit to palliative care, but don't see them.

Thinking of you every day and will be looking for your input especially after the Friday operation.

claoh

Ahh, i found them. Apparently I was on page one instead of page 2!!!!

Sadiej

Too funny Claoh!

I hope mashedpot joins us too. She has the worst diagnosis with it being in her bones. What a terrible, painful ordeal. My heart reaches out, for sure.

So I was emotional mess last night. I was going from anger to tears, mostly tears LOL. Can you say I'm a little bit scared about this upcoming procedure with a gamma knife? (Yes). I read about what happens afterwards and really pray that I don't have all the things that they say you can get from having this done. It wasn't so much the tiredness and fatigue as much as the possibility of swelling of the brain. They're also headaches etc. But the recovery time is anywhere from days to weeks. I have no idea what I am getting into and I really think the fear of the unknown gets me more than anything. You'd laugh, I told my husband I was fine while I have tears dripping down my cheeks LOL. He says I'll be fine and I wish I had that kind of confidence. I told him I'm starting to feel like a guinea pig. Do you sometimes fear the unknowns in your path? Or have you come up with a solution on how to deal with that? This is a pretty rough ride and I keep thinking in the back of my mind that I may or may not make it even with all the technology and capability of the Cleveland Clinic. Guess you could say my fears are great, my hopes are great, and I have a good friend right here that I can talk to at any time about all of this. Will be headed out to the Cleveland Clinic today. They have a hotel ready for us because I have to be there at 6:45 tomorrow morning. My procedure is actually going to be at noon and last for an hour and a half. Then of course there's recovery time so it's going to be a pretty long day. My poor husband will probably be bouncing off the walls just sitting around all the time. I really hope he finds something to do. I am blessed with a good husband, a true soulmate. Between him and my daughter I feel well loved. She was up here last weekend from Georgia and was actually getting me to eat, something that is actually very low in my list of things I should do. CC says I have mild malnutrition but sometimes you just don't want to eat, you know what I mean? She is such a good cook and she knows how to create the best dishes, my husband with his love for carbs and me with my love for fruits and vegetables. She did an amazing fruit salad that consisted of various fruits cut up small. Then she took some vanilla yogurt and added a little cheesecake powder to it. She mixed that together and topped it with some really good honey granola. Yeah that'll get me to eat LOL. I'm sorry this seems to be mostly about me today although I do really want to know how you feel about any unknowns and how you plan to walk through them. I'm not sure how soon I will be on this after surgery but I will try to get on soon as I can to let you know how it went. Hugs

PS: here's a good website that shows what I will be going through with the mask.

https://mayfieldclinic.com/pe-gammamask.htm

claoh

Just read the article. Wow - the work that had to be done to accomplish the gamma knife. So many tiny rays to build into the amount needed while protecting the rest of the brain. And the mask with reference point. Amazing.

Like everything there are some possible issues to confront. That is what is so hard, there are no absolutes and we each have to decide what we're willing to confront. Even when we see commercials on tv about drugs and they list a bunch of side effects. You may wonder why we'd take the drug. Yet, millions do. That is the major difference in our decisions. No one can say which is better, but I believe mine is the road less traveled.

Both of us wonder what we're getting ourselves into. We'll never know until after the fact what we'll bare. Again, I am thankful for your input and support and do hope others will find our openness helpful.

Look forward to hearing from you whenever you're able. You are definitely in my thoughts and prayers. I check our site often hoping to see your posts.

Mashedpot

Good lunch with the knife. It sounds like u2 have a nice rapport . How long has this been going on for u2? The recurrence? I just found out about the e recurrence 6 mos ago when I broke my pelvis. That hurt! But after it healed I have. I bone pain. Wouldn’t even know it’s all over my bones. Very strange but thankfully I’m not in pain. I get the xeloda infusion today and then start back on the 2 week on and 1 week off and then repeat. I’m curious whe this will start to hurt and drag me down.

I have not told anybody about this condition because I don’t really have any symptoms and don’t feel any different. I have not even told my children or grandchildren or friends. I’m sure that’s a bit strange but having been through it one time before I don’t want to go through the pity and the extra attention, and prefer this for now. I’m sure later on when things are more evident, I will spill the beans. I read a post above that I agreed with it said to stay in the moment and do what you can and not look at numbers or statistics. That hit home for me. Good luck everybody with whatever comes our way.

mash