Choices

marlakeeth

I did read your post and I’m interested to see what happens with everyone. We all have to stick together and tell ourstories.

claoh

Everyone is different in how they react, but glad to hear you have no nausea. Can you share a little about yourself:

how old are you, have family, anything else without personal details. What stage and grade is your cancer? What is your treatment regimen and length?

Feel free to ask either of us questions, and share concerns.

Sadiej

Claoh welcome back! I hope your visit was wonderful!

Marlakeeth, I totally get what you're saying. It seems chemo wipes us out for a few days afterwards not to mention the horrible nausea the night of the chemo and into the following days. Recovery seems to be getting slower for me. Is it for you? My nutritionist told me that I had to have 110 g's of protein everyday to help offset the chemo effects. I see her again next Tuesday during my treatment so we'll see how well I did. I got busted for not eating and they put me down as having mild malnutrition. My daughter came up and straightened that out and has me on lots of fruits and vegetables and for protein I drink the premier protein shakes. They're about the only ones that don't taste like crap. I get the latte flavor and add it to my coffee so that I can still have my coffee and still get my daily protein values I need LOL. Got to have my coffee. :-) Did a nutritionist talk to you about your needs concerning chemo?

Claoh it is so good to see you back! As you can see it was pretty quiet on the boards although I am grateful that we have another friend now to walk this journey with us in Marlakeeth. I finally got my port in Monday so no more through the arm chemo. I have a huge black bruise around the port area that is very sore LOL. It looks like somebody punched me haha. I also have a cut at the base of my neck that has been taped and it's also sore. It's nothing that you notice until you accidentally touch it. The one at the base of my neck was used to put the port in down below. Tuesday was my first treatment with the port and I appreciate the fact that every time I moved my arms I didn't set off the alarm on the pump. :-) Like I said next go around is this next Tuesday so I, like Marlakeeth will probably be off the board while I try to recover.

Marlakeeth do you have any plans concerning your TNBC? I wasn't sure what stage you were at when it was discovered for you, but I have been told both mastectomy and no mastectomy and haven't really found any good answers yet concerning either one. Thankfully that's down the road for me because for right now they're only trying to get it slowed down. They found tumor embolisms in my lymphatic system so I'm really not sure where all this is going. I was stage IIIB when I was diagnosed but that was before they found the little embolism in my brain so I'm not sure what stage I'm at right now. The one they found in my brain was tiny, no bigger than a sesame seed. The gamma knife surgery was really easy and I was out long before I was supposed to be with no more ill effects then sleeping for two and a half days LOL. As Claoh and I have discussed, palliative care is essential for your journey. I am grateful that for now Claoh only requires aspirin. TNBC can get nasty and it always helps to have someone backing you up such as those in the palliative care.

Okay y'all, I think I have yammered on long enough. Waiting to hear from both of you. Claoh, I missed you dearly and am grateful that everything worked out so well for you when you visited your family. Marlakeeth, I appreciate your openness and look forward to your next post.

Pat

marlakeeth

Thank you for your great post. What are you doing to get the 110 g of protein every day just curious.

marlakeeth

I am fortunate that my cancer has not metastasized anywhere! Just localized in my right breast. Feeling yucky yesterday fourth day after chemo was throwing up and nauseated. Most of the day today seems better. I’m at least dressed and have some coffee just a little bit Zonie if you.know what I mean.

Sadiej

Hi Marlakeeth

To get my protein I use Premier Protein drinks and powders. They have 30 g's of protein per drink so if I drink three of them that already gives me 90 g's per day. I'm sending you this link through Amazon although there are many other singular drinks and powders from Premier Protein that you can get. This just shows you the different flavors. Best of all they don't taste like crap. :)

https://www.amazon.com/dp/B0BC2CSDM7/ref=sspa_mw_detail_0?ie=UTF8&psc=1&sp_csd=d2lkZ2V0TmFtZT1zcF9waG9uZV9kZXRhaWwp13NParams

Dang that's a long link! Hope it gets you to the Premier Protein shakes on Amazon!

You must have caught your tnbc early. Mine had already blown up on me and metastasized before they got a diagnosis. It seemed like it was an overnight thing, one day I was fine and the next day my right breast is swollen up to about three times the size of my left one. I'm grateful that yours is not metastasized.

I have been exhausted since my last chemo and then a little concerned coming into the second go round this coming Tuesday. Seems like all I can do is sleep. I'll be grateful to talk to my nutritionist to find out what that is all about and ways I can offset that. I was fine until last Tuesday's chemo but for some reason it really took me out. Of course it could be a combination of that and Port install. I also have two different types of nausea pills that I can take either separately or together to control my nausea. Haven't had to treat any diarrhea yet thankfully. That was a real issue with my last breast cancer / chemo that I had in 2013. I still have my hair after five go rounds of chemo which I'm actually surprised about. I thought for sure that I would be shedding my hair by now.

Claoh you're really quiet. Are you okay?

claoh

I am fine Sadiej. Truth is, sometimes I feel a bit quilty and overwhelmed after reading what you and marlakeeth are going through. I know this will not last forever, but am in a decent place right now. As I said before you are so resilient, it amazes me how upbeat you are through your journey. Marlakeeth, you truly have found an inspiration when you happened on this site. Stay close and Sadiej will walk you through this.

Sadiej

Claoh you are just as important as any of us here. We all know that we have separate paths but each path is not lessened by what we go through or don't go through. Remember that this is a story of different journeys and each journey allows others to make decisions also. The fact that marlakeeth's hasn't metastasized is wonderful news. The fact that you feel few symptoms at this time is also wonderful news to me. I am grateful for these things and find encouragement through both you and marlakeeth. It makes me feel good to know that there are others that aren't going through all this crap LOL.

Today was the first day that I woke up and was simply tired. The exhaustion from last Tuesday's chemo kept me sleeping most of last week. I think a good night's sleep tonight and tomorrow night will put me back on my feet for chemo on Tuesday. I've noticed that the swelling in my right breast has gone down which is good news, but the lymphedema in my right arm is still there. With the help of the nurse at the Cleveland Clinic we figured out what size I needed so I could order my sleeves from Amazon. They're much prettier than the stuff that most pharmacies offer. I got two sleeves so I'll be really styling between my pink cast on my left hand and the sleeves on my right arm lol. The sleeves help to protect me against DVT which can happen when you are taking chemo.

I also had a heart to heart talk with my palliative care doctor last week. I wanted to make sure that he would take care of me and my pain if (when) this gets worse. It was a hard discussion for me but he was appreciative of my openness. He has my back as does my primary care doctor for anything that I'm going to need now or in the future. That is a relief off of me, especially when I have enough stuff going on I don't need to worry about that too LOL. I used to tell everybody "you know, in heaven there is no pain", but people just took that as if I was going to do something crazy when to me it was just a simple truth. Went to their psych to remove the stigma on my record at CC, who also agreed with me that I am perfectly normal LOL. She told me I have to know my audience before I make comments like that. :-) We got along quite well actually, and she told me if I ever needed to talk again to just let her know and she'll schedule it. There wasn't any sense in scheduling a regular meeting again because she found me to have both feet on the ground so to speak. Geez. I can sure get myself into trouble sometimes haha.

Claoh, I appreciate your sweet comments but I feel that every one of us are encouragers. You have helped me out quite a bit with your advice and I always look forward to your input.

Marlakeeth, you are important too and I look forward to hearing what your path is going to be. Have you found a palliative care doctor yet? I find them to be very important in our journeys.

A quick note on the Premier Protein. Yes I find this to be the easiest way to get my daily quota of protein in me but they are expensive. What I found (at least in my state, you will have something similar in your states) is an organization called Area Agency on Aging that not only helps pay for this but also helps pay for someone to come into the house to help me with meals etc. We found a wonderful person who helps tidy up the house and makes my lunches and watches out for me when my husband has to go somewhere. None of this would have been possible without that organization. It may behoove you to find someone similar in your state. It takes the extra weight and responsibility off my husband and gives him a caretaker's break. After all, it is important that your support system does not break down from all the stress that this puts on them.

Anyone noticed that I seem to write a ton when I get on this board? LOL

Y'all be blessed. 🙏

claoh

Once again, thanks for your bountiful encouragement!! I also will look up the Area Agency on Aging to see what they offer in my area.

Like you Sadiej, this board is one of the first things I think of many times in the day and look forward to seeing there is a new "post". We are not alone in this journey.

marlakeeth

Good evening ladies, First off I tell you other than some mild nausea today, feeling pretty good. Just have to stop and take a nap every few hours. I am 70 years old and live near Pasadena, ca. I wonder where you both are from. I did not discover my lump until I had extreme burning pain at the site of the lump. I have lumpy breasts anyway, so the pain was a surprise. Call the dr and went for a mammo and then an ultrasound, then a biopsy, then another MRI with biopsies. GLAD I have insurance. All of this since May 7, 2023. I was then sent to the oncologist and got that talk, took my husband with me. My port placement on July 10, 2023, was uncomfortable, to say the least. Had pain in my chest on inspiration week after port placement and the surgeon wanted me to have an x-ray and CT scan to make sure the port was in the proper position. All good, but then, The nurse had trouble accessing the port so I had to go back to the Interventional Radiologist to check the patency of the port. Another uncomfortable procedure! That was July 31, and then I had a PET Scan, and thankfully no signs of cancer anywhere! Finally started AC the next day August 1, 2023. First day and a half after Chemo, Screaming headache and nausea. Found out the Zofran gives you headaches! The chemo nurse called me daily to check on me and said to just take the Compazine. Worked very well. I went shopping at the market with my husband yesterday and came home exhausted. Took a 2-hour nap. Today is better, went to breakfast and had 2 poached eggs on toast, DELICIOUS! So I am taking Sadiej's nutrition advice and going to have at least 100 grams of protein a day. Other than that nothing much else is new, an by the way you can just call me Marla.

Talk soon and thank you for sharing so much information with us triple negs!

claoh

Hey Marla, glad to hear it is going well with you at this time, with no evidence of cancer outside the breast. I live in Florida, also 70 years old. I like the protein idea also. When I got the PET scan, the tech said cancer loves sugar. I've tried to cut back on that, but not completely. Thought I might lose some extra weight, but that hasn't happened so far. : )

marlakeeth

I hear you about the sugar and weight, I have lost 4 pounds this week. Just eating small frequent meals about every two hours.

Sadiej

Ha ha, I'm the kid in the group. :-)

I am 66 years old and live in Pennsylvania. I'm close enough to Cleveland to be able to go to the Cleveland Clinic which I am grateful for. They have provided me with oncologists, nurses, nutritionists, palliative care, mental health professionals (mostly using for caretaker overloads) as well as help for places to stay when I have two days back to back up there. I'm grateful for all of them and glad that they understand how much I hated chemo going into it. In fact I have been messaging my doctor's office today and told them about my exhaustion so they gave me the option to lighten the dose this time to see if that helped. They also recommended exercise for the exhaustion but really all I want to do for that is to swim (which I love). Problem is my left hand is in a cast and will be that way for another 3 or 4 weeks. I've considered dragging a chair down to the creek behind our house and sitting in the middle of it with a fishing pole and my feet in the water getting a nice massage. I figured the exercise is getting to the creek LOL. Another interesting thing that happened to me is due to this particular chemo I have developed burning tongue. The front half of my tongue feels like it's burning. There are no sores in my mouth like some people get but it is tender. The head nurse in the oncology department recommended I get L-Lysine 500 mg or if I can't find those to get 1000 milligram tabs and cut them in half, 500 mg twice a day between meals. I never had burning tongue with my last chemo so this is all new to me. I am on the second go round of chemo which consists of 4 doses. I am at number 5 which is 4 in the first go round and 1 in the next go round. I suppose I should feel grateful that the chemo hasn't really affected me until the last one. I'm still surprised I still have my hair. Like I said, they're taking it easy on me because of everything I went through in the last chemo and the damage that was done to me which was great. So I've got a couple more chemos and then we do a pet scan to see where I'm at. I keep thinking about the fact that this is treatable but not curable. I wonder how long I will be on this journey? Perhaps during this time they will come out with a clinical trial that bespeaks a cure. Wouldn't that be great for all of us? :-)

I am so glad to see both of you on the boards. Your experiences really do help me. I am grateful that neither one of you are going through what I am. It is refreshing for me to see that.

Marla, I'm sorry you had trouble with your port. I think that happens more often than they care to admit. When is your next chemo? You will have to let me know how it worked out with your port. I understand the headaches. I usually take a couple Tylenol to calm mine down. That and as you said a lot of sleep LOL. We'll have to see how I feel the day after tomorrow with my chemo. I can't let myself wear down because it's too easy to get sick when that happens. The doctors are keeping an eye on my blood work just to make sure nothing is there. Have you found palliative care yet? I can't recommend them enough for what you were going through. They can help you with headaches as well as your breast pains. They keep an eye on you and make sure that your quality of life is as good as it can be at this time.

Claoh you are the best for always putting in a good word and you're encouragement. I know you think that this kid (me) is the encourager but I really think that you are much more. I didn't know that about the sugar. That's interesting that they know that. Did they tell you anything else about it? You got my curiosity up LOL. Of course I love my sugar so I'm not really sure what I'm going to do there haha but there's nothing like a bowl of strawberries and blueberries with cream and sugar on it. I'd really have to think about that one before I gave up my sweet tooth. :-)

claoh

That was the weird, disappointing, thing about the sugar. I only found out talking with the PET scan tech, asking what was used to show cancer when they injected the dye. She mentioned it was sugar based because cancer loves sugar and that is what helps to "light it up". No doctor ever mentioned it, and I thought that was disappointing. I have cut back on the sugar, but still get some - especially in fruit. But they say that is good for us, go figure.

One thing that is special in all this is the closeness my sons have demonstrated with frequent calls and planned visits even though we all live in different states. Last night my oldest called and in the conversation asked if I still played an online game called Junes Journey. He was going to look it up, and perhaps join me in playing it. That is so sweet and considerate, something that is really not his forte, but doing it to have distant time together. Meant a lot.

Sadiej

Claoh that is so sweet that your son is doing that for you! I just love that!! Thank you so much for sharing! It definitely put a smile on my face.

I think I will ask the nurse tomorrow what she knows about sugar also. Guess that turns us into our own detectives trying to figure this one out LOL. It's not quite June's journey, which I am familiar with, but kind of sorta our own little investigation. :-)

It's getting late and yes I'm still up. Not looking forward to chemo tomorrow but we'll see what happens. Tried to get as much protein in me as I could to see if that helps to offset the chemo. I will admit it is hard for me to get 110 g's but I downed about three bottles which gives me 90 g's. I'm pretty sure my meals made up the rest. Thank goodness this drink doesn't taste like crap.

So obviously I won't be on the site Tuesday after my chemo. I already know that there will be nausea with that and it will take me about 24 hours to recover from just that. I'm really hoping they do go with the light version of it just to see how my body will react. I really wanted some hard-boiled eggs for on the way out tomorrow but we ran out of time. The extra protein in the eggs will get me started for the day and help keep my stomach settled going into it. I know it only takes about 15 minutes to make them but it seems that and everything else had to be done. Our helper, Sarah, from the Area Agency on Aging is on vacation this week celebrating her birthday. She will be back Thursday and I can't wait until she can come over. I'm hoping that I will be able to see her Friday. Of course after this chemo I have 10 days off before the next go round. My husband and I have talked about possibly getting a cabin just to get away from everything for a while and try to have something a little more normal in our lives. Of course up here at the house I'm not really sure what's normal haha. We have the cats to take care of, both the indoor and the outdoor (feral) ones as well as an Peaky and Sweep. Those are two female deer that hang out behind their house in the field and bring their babies up so we can see them. Peaky is the mother of Sweep who is now 2 years old. This was Sweeps first year of having babies and unfortunately she lost them. I expect to see her with babies next year and a little better idea of how to take care of them. Peaky has taken on grandmothering and will bring out another couple females with about four or five babies to let them run around the field like it was the Indy 500 LOL. Then of course we got Chucky our groundhog and Jeffrey our blue jay who seems to have gotten mighty obnoxious since he was a baby a couple years ago. :-) Anyway this can keep our attention when we're home and our minds off of what's going on with me. It's nice to be able to look outside instead of inside yourself. Seems like all that does is drag a person down. As you can probably tell, I am surrounded by the forest and find it refreshing when I can get away and just enjoy nature, with its clean, emerald green woods and clear streams. It brings a peace to my soul that I can find in no other place.

Just in case anybody has cats, make sure you have someone else cleaning the kitty litter. The chemo makes you compromised and can make you sick if you try to do that yourself. It was something I learned on my last chemo. My husband takes care of it for me.

Anyway I will probably chat with you Wednesday or Thursday at the latest. Let's keep the boards going!

Y'all be blessed!!

claoh

Looking forward to seeing you soon Pat. Marla, how are you doing? Went to GP doctor today and had a good talk about my journey. She is so supportive, I love my time with her. Asked if I could do heating pad, CBD cream on breast. Felt it would be ok, but check for CBD reaction on inner arm before putting on breast. Raising my blood pressure med to counter Advil, as that can cause it to rise. My next general appointment with her isn't for six months. I see my palliative doctor in two weeks. I like her very much also. Feel I am in good hands with both.

Sadiej

Morning Claoh and Marlakeeth!

I feel like I have a bad fuel filter LOL. I got up every single day with intentions to write on his board, and zzzzzz. Wake up again, really need to write and zzzzzz. Okay, seriously, I need to get on this board zzzzzz. This time I'm getting smarter about it and writing you as soon as I wake up. :)

I had the standard nausea for a couple days after chemo and for some weird reason I had a bout last night. They say that fatigue gets worse the further you get into chemo and I believe it. Last week after my session I was so fatigued I was downright lethargic and couldn't move other than to turn over and fall back asleep. I told my oncologist about it and she lightened up one of the chemos by 20%. Seems to help because now I am just tired and not beyond exhausted. Actually I didn't know you could do that but I thought I'd ask her anyways. Hey the worst that can happen is she would say no lol. I am through my 2 chemos and don't have to go back until the 21st for the next go round. (Whew).

Claoh, I'm a little bit concerned about you. Make sure that when you see your palliative care doctor you basically tell her what you said in your above comment. She's there to help both for something besides your aspirin as well as something to help with the pain in your breast. Has your arm started to swell? Mine did when it metastasized to my lymph nodes. I had to get measured for lymphedema sleeves so that I didn't end up with DVT. I didn't want any ugly ones so I went online to Amazon and the nurse at Cleveland Clinic helped me figure out what size I needed so now I have two really cool sleeves, one to wash one while I wear the other. They are expensive but it protects me from blood clots.

Marlakeeth are you okay?

Pat

marlakeeth

Good morning ladies! I also have been meaning to write. How can we get more people to join our group?

I know that they are out there. I am now status post chemo 1 cycle 12 days and finally feeling pretty good. I too, shall have my 2nd chemo on August 23rd. I vomited several times, funny just the dry heaves, yuck. I have been trying to keep something in my stomach 90 % of the time. That seems to help. I am drinking at least 64 ounces of water a day hopefully. That is my goal! I try very hard to have at least 90 gm of protein a day. so far so good. The first three days after chemo were not great but okay. Got a bit stronger every day but to several naps during the day. Yesterday was the first day I did not need a nap, just laid down and rested several times for 20 minutes. Sleeping at night can be a toss-up, sometimes good, sometimes up walking around or tossing and turning until to 2 in the morning.

I had cut my hair about 3 inches long before chemo started, and yesterday my scalp began to hurt like there were sores on my scalp. Yesterday I called my hairdresser and she said it was time to cut my hair to about 1/2 long and the pain will subside. I had my sweet husband buzz cut my hair to about 1/2 in long and low and behold the soreness was almost gone immediately!!! I am okay with short hair since I knew that this was coming and psyched myself up for it. I knew it would happen!

This is the only size of the photo, I could not make it smaller, no hair no makeup no nothing, just me. I am having my house painted today outside, a week-long process so that when I have my chemo next week, it will all be done. I really have learned from all that you ladies have posted and like to share my journey with you. Maybe some helpful tips will pop up!

Take care my ladies fair. Smile PMA, Positive Mental Attitude goes a long way if you can!

Marla

claoh

I am SO glad to see both of you on today. There really are severe withdrawal feelings when the board is empty!!! Found myself say "Come on Sadie, Come on Marla!" : )

Hair cut looks good Marla. I've read several say that is a good move, not as devastating as seeing it fall out in clumps in the shower.

The 21st/23rd are big days for all three of us.

I do not feel my arm is getting any bigger. The tumor definitely is. There have been a couple days when the arms ached and felt a little numb that I will definitely be discussing with the palliative doctor on the 23rd. What is strange is that it is both arms, but only the left breast and arm are affected.

I try to take as little pain suppressants as possible. That is why I wondered if warm heat or CBD cream would be a comfort. I just love to keep the warm washcloth on my breast for a bit each morning when washing up : ) I did purchase some CBD cream, but do feel I want to also have my palliative doctor give the go ahead. Feel I am still in a good place with what I'm doing.

We are being read by several. Last I saw we had over 800 who looked at our link. I am so glad you two have chosen to build a bond. Like I mentioned, not having you would be such a void in this journey!!!

marlakeeth

Claoh, you are so sweet and such a trooper. I just lost my friend's daughter to stage 4 terminal uterine cancer the other day. Take care and am glad that you are having a great time checking off those things on your bucket list!