MIDDLE-AGED WOMEN 40-60ish

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  • biscuits
    biscuits Member Posts: 3,304
    edited October 2016

    Dianarose...I, too, loved my port. Easy surgery with no pain afterwards. Made the chemo infusions a breeze! After chemo, flushing every 6-8 weeks, just like MinusTwo stated. I am scheduled to have mine removed on Tuesday. It's been exactly one year and it's kind of become a part of me

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  • remz
    remz Member Posts: 393
    edited October 2016

    Dianarose,hi! I had my port for 9 months no problems. I would gladly have it again should i require iv therapy. I only recall it being flushed at some point during my chemo visits which were every 4 weeks. The only issue i had was it hadn't been completely removed by the srugeon. I noticed a small piece in my neck a week after its removal. It was removed in the surgeon's office with a local anesthetic.No harm, no foul, we all make mistakes!

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  • Dianarose
    Dianarose Member Posts: 2,407
    edited October 2016

    need to be at hospital for 9:30. This is a double header pocket party so join me for all the fun lol. If your bringing snacks I am still on a full liquid diet

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  • Loral
    Loral Member Posts: 932
    edited October 2016

    Cheers Diana, and Good Luck Today!!!!

    Image result for protein drink

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  • elimar86861
    elimar86861 Member Posts: 7,416
    edited October 2016

    You probably had no liquids since midnight, Dianarose, so I'll put these out for you when you wake up.

    image

    While I could appreciate having a port for the 10 rounds of chemo that I did, I cannot say that I liked mine. First off, it was twingy and achy for some weeks after the placement. It was very prominent and, as I lost weight during those chemo weeks, it just protruded more and more over time. I mean mine was raised up about a half inch or more above the surrounding area. I was always conscious of it being there and felt it when I moved. My bra strap did touch it, but luckily only on the very edge. I forget the reason but my MO lab never used it for blood draws so I still got poked in the arm every two weeks. Mine was a Power Port. I had mine for 10 mos. and got it out 2 mos. PFC, which was not a moment too soon for me.

    While I say that, I also know that if I went Stage IV and was looking at various chemo infusions in my future, I would probably get another port in because I don't think I would want to have those hours long infusions thru' an arm vein or risk damage to the vein with the repeated insertions. I do think the port is a very good thing if you are already a "hard stick" for the arm veins, or if lymphedema limits access to arm veins.

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  • Eph3_12
    Eph3_12 Member Posts: 4,781
    edited October 2016

    Yes, I am a hard stick and the port was a good thing, but like E~~it wasn't my favorite. For one thing, when mine was put in place, some vessels weren't "shut off" so the area filled with so much blood, it looked like I had a 3rd boob. Once that was taken care of and it healed, it wasn't so bad, but I was always aware of it. but I definitely preferred it to having IVs each time I would have chemo-that would have been awful.

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  • Lita57
    Lita57 Member Posts: 2,437
    edited October 2016

    Eph...that fluid/blood build up must have been very uncomfortable. "3rd Boob"...wouldn't that would make a great online user name?

    Lita


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  • Dianarose
    Dianarose Member Posts: 2,407
    edited October 2016

    Thanks for the 🍹. Things did not go as planned, that's normal! They only did the naphostomy tube because they don't want to put the port in while I have an infection. Now I have four more days of antibiotics then do a culture and see. Pain in the ass. It took them three attempts to put the IV in. That sucked.

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  • Loral
    Loral Member Posts: 932
    edited October 2016

    Bummer Diana, when it rains it pours...Hope you get well quickly.

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  • Dianarose
    Dianarose Member Posts: 2,407
    edited October 2016

    Just got off phone with oncologist and it's just got more confusing 😖. She said it's ok that they didn't put the port in yet. She had a meeting with several doctors who all reviewed my scans and they are not sure what is really going on. Having a full body scan on Thursday. They want to see if there are any changes either way. I am also being tested for Lyme disease tomorrow. They are still hoping to be able to biopsy something before giving me chemo. I am on a roller coaster and want off! Don't even know what to think. She said even though my tumor marker is 175 how much of that is from inflammation. I am so tired

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  • Loral
    Loral Member Posts: 932
    edited October 2016

    Diana...Wow, at this point I would question there decisions. Maybe have the body scan, and let them find something to biopsy before having Chemo again...Lyme disease, that's a hard one to diagnose, read about Kris Kristofferson...Stay strong!

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  • Dianarose
    Dianarose Member Posts: 2,407
    edited October 2016

    Loral-my daughter and granddaughter have Lyme disease. She was told she had MS to all kinds of crazy things before they did the right test. It can really mimic abdominal mets. At least it's just a blood test to rule it out. They have been on strong antibiotics since July and are responding well to treatment.

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  • Loral
    Loral Member Posts: 932
    edited October 2016

    Diana-So do we wish for Lyme Disease???????????

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  • Dianarose
    Dianarose Member Posts: 2,407
    edited October 2016

    Loral- sounds better then cancer some

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  • Lita57
    Lita57 Member Posts: 2,437
    edited October 2016

    I've heard that Lyme can go underground and not be detectable by blood tests, but it's still there wreaking havoc. Very nasty, tricky disease. Good luck.

    Lita


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  • Loral
    Loral Member Posts: 932
    edited October 2016

    Yes Diana....anything better than Cancer!

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  • Dianarose
    Dianarose Member Posts: 2,407
    edited October 2016

    Things have changed once again. Got a call from oncologist Tuesday and she said they had a tumor board meeting and an oncology surgeon was there and said she saw no problem going in my tummy and getting tissue samples needed for a biopsy. They all agreed it should be done to do a chemo sensitivity test to make sure I get a chemo that is going to work. I Agee with that as well. She said there are several spots that looked like someone had just sprinkled sugar. My breast were the same way😢. Today I go for a full body ct scan. I really hate the contrast crap. Friday I go in for the biopsy and she is putting in my port. She is going to change out the naphostomy tube and bag again because the idiot on Monday gave me the wrong one. I have so much dam tubing I can wrap it around me three times. I hate getting put to sleep again 😆. Once they have the results chemo will start. I just want to start so I can get done with it. So much time gets wasted until you find the right doctors.

    Got some bad news yesterday. My aunt committed suicide. Was a big surprise as she was healthy and always seemed upbeat. She had been taking care of my uncle for years who has Parkinson's.

    On a positive note yesterday was my 12 year cancer-versary and hubby took me to the casino. I actually won and left with 700.00 of their money 😁.

    Hope everyone is doing great

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  • elimar86861
    elimar86861 Member Posts: 7,416
    edited October 2016

    Dianarose, I think everything you wrote above is good news (except for your aunt; condolences, may she r.i.p.) I like the plan of action and finally you are getting something done, a lot of things done actually. Hopefully this is the last time you will have to "go under" but that is three birds under one anesthesia. Too bad they eff-ed up your naph. tube. I know you are so ready to move forward and after Friday, maybe that can become a reality at long last. I know you are ready to EAT SOME REAL FOOD and I am still waiting for that good news to come. I wonder what your first real meal will be? So, look, you walked out of a casino with $700...who says the odds cannot be beaten? Keep doin' it!

    image

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  • Loral
    Loral Member Posts: 932
    edited October 2016

    Diana...Maybe your luck has finally changed...Hope all goes well with the testing. Sorry to hear about your Aunt may she now rest in the arms of Angels.

    Image result for casino

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  • barbe1958
    barbe1958 Member Posts: 19,757
    edited October 2016

    Diana had your uncle passed? Was that a catalyst for your aunt. May she rest in peace..

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  • Dianarose
    Dianarose Member Posts: 2,407
    edited October 2016

    Barb- my uncle is still alive but in rough shape. She killed her self with morphine. I am assuming it was his as she was healthy.

    Does anyone know how long the chemo sensitivity test take to come back. We haven't told the old oncologist we are through with him. Not sure how to word it without coming off like a bitch.

    My daughter and little granddaughter are still battling this whole Lyme disease thing. Little Lydia falls asleep by her cereal bowl and does at school too. She went to a specialist yesterday and he said it could be cat scratch fever which can be caused by a tick also. Did a ton of tests. He said he would send them to Connecticut which made me happy because it's less than 4 hours from here. I feel bad for both of them.

    Hope everyone is having a great day

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  • MameMe
    MameMe Member Posts: 425
    edited October 2016

    Greetings to all, its been awhile since I have been on BC.org, so I was catching up on the gang here, this afternoon. Dianarose, what a major project you have had to mount, getting the right team together to really treat your issues. I so hope a strong and caring doc or nurse can advocate for you now. How the other docs could be so detatched just makes me so MAD! Wow.

    Hospice teams might be helpful, if you have the communityy based kind in your area. I was encouraged to at least talk with them before I was ready to enter their program. (That is still a ways off, fortunately) .Someone in the healthcare system near you needs to become passionate about your well being! They can work wonders, and it would save you a lot of energy. Waldo County has a great onc. team and an advocate for their cancer patients. PenBay in Rockland has some of the same staff, and is doing good work with patients. There have to be some good providers at the Breast Care center in SoPo. I believe they just established two newish dept. heads, both are female oncologists. Make an appointment to tell them your history, maybe. Its so important for the team to know you and care about you! Grrrrrrr!!!!

    I just finished two years on Xeloda at half dose, and am starting aromasin. So far, so good. Next week th want to add femara. I am cautiously optimistic.

    Big hugs to all, you are such a great bunch!! xo Mame


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  • Dianarose
    Dianarose Member Posts: 2,407
    edited October 2016

    Hospice here is when you are at the end of life. Not there yet. Just the tought of it 😢 . My new oncologist is on top of it just wish I had found her sooner. On my way to hospital now for both surgeries. Ate tomato soup last night. Sent four hours in pain and puking. That's on the do not eat list no

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  • Loral
    Loral Member Posts: 932
    edited October 2016

    Diana...Praying all goes well......

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  • elimar86861
    elimar86861 Member Posts: 7,416
    edited October 2016

    Hi, MameMe, good to hear from you. Thanks for passing on your info. about some providers up in Maine.

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  • Eph3_12
    Eph3_12 Member Posts: 4,781
    edited October 2016

    I am late to the party. Dianarose, hope all went well today. So sorry about your aunt.

    MameMe-nice to see you again.

    Since my brain is swiss cheese I don't remember if I posted here or not about my brother being killed in a boating accident at the end of Sept. It was such a shock and still is. Going thru pictures and came across this beaut. (I know some of you are seeing this on FB too-haven't completely lost it! :) late '57 .


    image

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  • MameMe
    MameMe Member Posts: 425
    edited October 2016

    Oh, Eph, that is so sad! I love your picture.

    As far as hospice goes, I will take any help I can get. They are a great resource for ways to stay comfortable at any stage of a chronic disease. I know they have been campaigning to be seen as palliative care experts, and are trying to broaden their contact with cancer patients at any stage. We have a residential hospice facility now at PenBay, which is for people in the last 6 months of life. Sussman House. separate from them is the hospice program that has a team that can help at home. Before being eligible for the home help, hospice can still share what they know about complicated and painful ca. related conditions.

    Dianarose, I am so glad you have a good onc. now. Best, best wishes for all the upcoming treatment. And that cake was a masterpiece!!

    Hugs to you all from foggy midcoast Maine. 🌫🌫🌫🍂🍁

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  • barbe1958
    barbe1958 Member Posts: 19,757
    edited October 2016

    Most of the hospice stays I've seen here on BCO are less than a week. It's almost like once you accept you're at the end your body can let go.

    Hugs again Eph. I can't imagine....

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  • elimar86861
    elimar86861 Member Posts: 7,416
    edited October 2016

    Eph, so sorry for the sad loss of your brother. I'm sure you were quite shaken. My condolences. (Cute Pic!)

    Barbe, I hate to say this but many people need "Hospice Awareness" since they do wait until they are in steep decline, when they could have gotten it sooner. I know that to some it might feel like throwing in the towel, but it is a resource to not only help the patient but it is a help to the family as well. A person is eligible for hospice when they get to "no more treatments left" stage. Insurance usually covers six mos. of hospice, but there are even extensions to that, if needed.

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  • Lita57
    Lita57 Member Posts: 2,437
    edited October 2016

    Thanks, elimar. People need to know the difference between palliative and hospice. You can get palliative at any time. Went to a seminar recently. Never too early to plan when you're St IV.

    Lita


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