chemo for stage 4 advice lungs liver and bones

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rodeogirl
rodeogirl Member Posts: 52

hi everyone i had my first chemo it was the red one- the nausea meds did not work- i went to hospital for 2 days on drip and vomited non stop- i then slept for 2 days- next week ive had bone pain and trouble breathing a few times as well as chest pain- day 16 first time i feel normal except for red sore nasal pasages and huge ulcers- is this normal- realy scared about doing it again on tues

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  • Fitztwins
    Fitztwins Member Posts: 7,969
    edited March 2016

    Hopefully your doctor will take this into consideration and maybe change your meds. Its not called the RED DEVIL for nothing.

  • Bestbird
    Bestbird Member Posts: 2,818
    edited March 2016

    I am very sorry to hear about your reaction to Adriamycin (the "Red Devil.") It can be very hard on the heart, and you should not have received it without first having a cardiac checkup. Please ensure your doctor is aware of your reaction. I'd suggest switching to a different treatment and perhaps also getting a second oncologist's opinion about your treatment.

    Sending you good wishes.

  • DGHoff
    DGHoff Member Posts: 624
    edited March 2016

    adriamycin for stage 4 seems pretty heavy handed. Iwould also talk to the dr and maybe get a second opinion.

  • rodeogirl
    rodeogirl Member Posts: 52
    edited March 2016

    all my cancer turned up in 3 months- i had 3 4 mm nodules on lungs and told to wait 2 months and see if grow- the appointment took an extra month and in that time it was everywhere- apparently i have multiple in liver biggest 1.3cm- i asked the onco how long and she said 6-9 months- i am due back on tue and my nasal passages are red raw and have huge ulcers under top lip- very scared- she did say that hormonal treatment would take 3 months to start working. I appreciate all your advice as finding it hard to trust the oncologist- also has anyone been using the marijuana oil- i have a friend whose wife had good results on liver tumor of 15 cm - she was given 3 months and it has near dissapeared at 12 months- i dont like getting stoned- so would find it hard as i have anxiety. i would like to try some alternative as well as chemo as i realise this wont go away and i have a 6 year old.

  • MaryK87
    MaryK87 Member Posts: 53
    edited March 2016

    very strange! rodeogirl! first of all i am feeling really sorry for you having these issues; secondly, i am truly surprised at your onco choice of Red Devil as it is usually used as first line chemo for early stage BC (correct me if im wrong). i am in the same boat with liver/lungs/bones involvement. but my onco started with carboplatin and taxol with zometa. i had a 2 years remission on taxol and carboplatin is said to have good results for TNBC cases ( im TNBC). I have seen many women complaining of mouth sores, ulcers and vomiting on Adriamycin. i had HORRIBLE experience on it first time around. what worked wonders for me was Decadron. i got this injection (IM) on third day after chemo and spent rest of my time at ease with absolutely no nausea, vomiting or any other issue. don't forget to drink a lot of fluids and get a prescription of mouthwash from your onco.

  • MaryK87
    MaryK87 Member Posts: 53
    edited March 2016

    My sincere advice is DO NOT try any herbal thing when you are chemo...just push your onco to change treatment option for you. were you diagnosed at stage 4 from the start or had a recurrence?

  • nancyh
    nancyh Member Posts: 2,644
    edited March 2016

    Adriamycin is a hard drug, but your symptoms are way beyond what is acceptable in my opinion. I would absolutely consider a different treatment since there are many, many chemos that are effective and less toxic. Weekly Abraxane or taxol come to mind immediately, but lots of other choices like Xeloda, Gemzar, Navelbine, and Halaven are all examples of chemos that tend to be easier in terms of side effects compared to Adriamycin.

    Hormone therapies are also very powerful, but they do take longer to get going, so it is often best to make progress with chemo first, say for example do chemo for 6 - 8 months, then switch to a hormone drug like Femara to hold the ground you gain.

    Since you might be especially sensitive to nausea, ask about getting Aloxi and Emend (along with decadron or whatever else) for pre-meds. The Aloxi and Emend work great for nausea and last continuously for about days rather than you having to bother with taking zofran at home every 8 hours. They do cause constipation, so make sure you are taking something for that. There is no reason in my mind for someone basically starting out on chemo to have such terrible, uncontrolled nausea. I'm so sorry you are suffering like that.

    Also, I'm confused why your onc would say 6 - 9 months, does she mean that's how long if you don't have treatment? I mean, yes liver mets are serious, but even with multiple liver mets, you should expect to have a reasonable chance of living years with proper treatment. Might be time to look for a different oncologist?

    To the question about marajuana, there's no credible research that it cures cancer, but some people say it helps with side effects from treatment.

    Final thought - you might try gentle salt water rinses for the sores in your mouth. I've had great luck with them, especially if I rinse 5 - 6 times throughout the day. If that doesn't work, there's a "magic mouthwash" that you can get with prescription (or mix at home) which contains oral lidocaine, Maalox, and liquid benedryl. It coats the sores and the lidocaine helps with pain relief. Take care and again, I am so sorry you have had such a terrible time.

  • MaryK87
    MaryK87 Member Posts: 53
    edited March 2016

    let me just add again..WHAT! I have multiple liver mets largest being 1.9cm but my oncologist never told me how much time I have. I am on high dose carbo.taxol and apart from 7-8 days after every chemo I get back to normal. fatigue and weakness is another thing but I assume that is from chemo. how could your oncologist possibly give you a few months. I would strongly suggest you to get a second opinion.

  • rodeogirl
    rodeogirl Member Posts: 52
    edited March 2016

    Hi everyone- i asked her how long if nothing stops the mets from growing and she said 6-9 months- thankyou so much for all your advice- i had breast cancer a year ago and was too scared to do the chemo- so ive kept regular ct and blood test- but somehow nothing showed up and then bang its everywhere- i asked her if she could start me on something not to strong so that i would be able to stick to the chemo- i get really bad anxiety and panic attacks she said that if i was to start on anything easier it may not work. Im due to go back tomorrow- i realy want to do the treatments and be here as long as i can for my son and have read so many post where people cope really well which gave me hope - and then after my bad experience im very anxious- i alos lost a stone in weight and trying real hard to put it back on- i even started eating tuns and fish after 5 years as a vegetarian so to build my strength :)- they were suggesting hooking my up with pallative care for the pain im supposed to get with my bones- till i had the pian in my liver i had no idea i hAd bone cancer- its all been a big shock and hard to get my head around to say the lease - maybe she is giving me red devil because i didnt have it first time around ? i sought of didnt have much hope when i left the office-i did my bloods today and will talk to the onco before chemo tomorrow- i tried the salt wash :) it helps thankyou - love all you ladies - you are amazing <3


  • rodeogirl
    rodeogirl Member Posts: 52
    edited March 2016
  • rodeogirl
    rodeogirl Member Posts: 52
    edited March 2016

    is anyone taking the injection to help with bone- it is the one that the worst side effect is necrosis of the jaw - how are they finding it

  • rodeogirl
    rodeogirl Member Posts: 52
    edited March 2016

    thankyou for all your advice it really helps :)

  • MaryK87
    MaryK87 Member Posts: 53
    edited March 2016

    hi rodeogirl!

    that injection must be Zometa right? I am getting that with chemo for bones. zometa is used for strengthening bones because bone mets could cause fractures and weakening of bones. I had worst bone pain from zometa first time around but I have heard that it usually gets better with time. and YES it could cause necrosis of jaw but that is the case with long term use like years...hope you are feeling better now.

    Mary

  • MaryK87
    MaryK87 Member Posts: 53
    edited March 2016

    I never had liver pain just had a little pain in right hip and turned out I have it in my liver, lungs and bones.

  • Korky482
    Korky482 Member Posts: 8
    edited March 2016

    I don't want to add to yours or anyone elses worries or to stress you even more. But my 62yr old mother, last year, had removal surgery for breast cancer, then went through chemo and radiation over the past year. She has been to doctor's every week since these were done. The surgery, supposedly got all the cancer, but chemo/radiation were all a follow up, "just in case treatments to be sure." They been saying she still had no signs of cancer. Until just over a month ago she was having so much pain in her joints. They kept saying it was all just after effects of treatments.and kept just giving hydros. Finally on 3-9, which was 1 day following her 62nd birthday, it got bad enough that they ordered a bone scan. Bone cancer. 2 days following, we had to take her to hospital for 2 days. Looked like pneumonia. When she went back yesterday, she now has spots on lungs and liver as well. A week ago she was up walking/moving around, now hurts to even open her eyelids, can't walk or really move. In past 4 days she went from being 62 to looking 82. So please bring it up to your doctor's. It is probably not the same as what is happening to you. I pray for you and hope it is. I just want you to be safe and catch anything before it gets worse. I don't know how she was in such observation, and this developed after her treatments. Instantly out of nowhere.

    Mom died that night. Complications of anesthesia, but no reason to what or why she died.

  • Moderators
    Moderators Member Posts: 25,912
    edited March 2016

    Korky-

    We're so sorry to hear about your mom. You're both in our thoughts through this.

    The Mods

  • artistatheart
    artistatheart Member Posts: 2,176
    edited March 2016

    Yes Korky, that must be so shocking and difficult. Prayers for you and your Mom....

  • exbrnxgrl
    exbrnxgrl Member Posts: 12,424
    edited March 2016

    Korky and rodeogirl,

    I am am so sorry for the situations you find yourselves in.

    Rodeogirl, Zometa and Xgeva are both bone strengtheners. Many get flu like symptoms after the first treatment, but do well after that. ONJ is very serious and painful, I'm told, but is not a very common side effect. Having any invasive dental work done before you start tx is advisable. Cleanings are fine but do let your dentist know if you're using this drug

    Lastly, if you have breast cancer mets, you don't have bone cancer (or liver cancer, etc.). You still have breast cancer and are treated only for breast cancer. Bone cancer is a whole different beast.

    Wishing you both well.

  • MaryK87
    MaryK87 Member Posts: 53
    edited March 2016

    exbrnxgrl! I have a question for you. you have bone mets I can see from your diagnosis. my onco had put me on zometa every 6 weeks instead of for. I had my first infusion with my first chemo and after a few days of intense bone I was feeling fine. but, now after second chemo (without zometa) I have intense pain in left side and left hip. it started right after my chemo infusion. and now after 13 days, it is still there not consistent but come and go. is it bone mets hurting because chemo is not working? what was your experience with bone mets?

    love to all

  • rodeogirl
    rodeogirl Member Posts: 52
    edited March 2016

    my 2nd chemo was cancelled because of low white cells- i now feel nausea every day ? what could it be

  • exbrnxgrl
    exbrnxgrl Member Posts: 12,424
    edited March 2016

    Hi MaryK,
    Our situations are very different. I have never had chemo. Since I am ER+ I have been NED for almost 5 years on AI's alone. I did have two years of Aredia, a bone strengthener like Zometa is (but it's an older drug). It never caused me any problems, other than flu like symptoms after the first infusion. My bone met never caused me pain either, however, it was treated with radiation with intent to render it necrotic (It worked). I have heard of pain caused by tumor flare during tx. Have you checked out the bone mets thread? The women there have a very wide range of experiences and may have situations similar to yours. Sorry that I couldn't be of more help. Take care.
  • Korky482
    Korky482 Member Posts: 8
    edited March 2016

    Mom died the night after i posted on here im confused. But like id said before, Radiation ended she had a food blockage in throat which they had to push down and streach esophagus in 10/2015. Said radiation related. The was at Dr each week for observation told no sign of cancer clear up until 3/9/2016. The day after turning 62. Was having alot of pain.was told after effects of radiation. Been giving hydros that barely helped. On the 9th, bone scan showed bone cancer. Given morphine pills.3/11/2016, went to er, breathing problems. Said likely pneumonia. Released on 3/13 with nebulizer. 3/14 back to Dr. Said small spots on 1 lung and small ones on liver. Set appointments for biopsies to determine treatments. But on 3/17, er. Had same food blockage again, they done the same outpatient procedure to push it down like in Oct. When they brought her out of anesthia, they don't know what went wrong or why they could only bring her partway back out of it. So they put her back under and put in drug induced coma after restraining her to the bed cause she tried pulling tube out. Called us to come there. Said wanted to keep her in that state till next day, and pull out breathing machine tube. If breathing on her own, they would try waking her again if not said they would shut off life support machine. Told us to go home and rest she would be there in the coma till tomorrow so nothing we could do there. We got called in middle of the night. She tried waking up on her own but said she was trying to pull tube out again ( while tied down to bed), so they shot her up once again to put her back to sleep!!!???!!!!? Again???!! She died 6 minutes later. We weren't there for her.

  • rodeogirl
    rodeogirl Member Posts: 52
    edited March 2016

    thankyou Mary- i will find out a little more about it - i have a bad jaw from having my chin slammed into the road when a car door ran me over- if my chemo works- i will have the shot :)- our mets are almost identicle

  • rodeogirl
    rodeogirl Member Posts: 52
    edited March 2016

    mary- chemo is making me get pains in all the bone mets- they move around- hip back shoulder sternum- firs chemo intens back back- this time it is my liver- hip and ribs

  • rodeogirl
    rodeogirl Member Posts: 52
    edited March 2016

    recurrence- i had no support system for chemo and a 5 year old first time round

  • rodeogirl
    rodeogirl Member Posts: 52
    edited March 2016

    sorry about your mum korky :( and thankyou or sharing your stories everyone- you are all helping me so much <3


  • ScienceGirl
    ScienceGirl Member Posts: 207
    edited March 2016

    Question for Everyone: Wouldn't it be logical for Rodeogirl to start a hormonal treatment now. I'm wondering why it's usually started after chemo. Seems to me that if there is a chance of benefit she should be on it?

    Just FYI - I'm on the Xgeva shot monthly. I have absolute no side effects from it and it has really helped to strengthen my spine.

    Rodeogirl wishing you a good day today

  • MaryK87
    MaryK87 Member Posts: 53
    edited March 2016

    rodeogirl, the bone pain could be caused by chemo itself. it is strange that i have single met in right sacroiliac joint but felt most of the pain in the left hip and lower back pain on the left side after each chemo. liver pain is another thing i am having during my chemo i had not liver pain on diagnosis, it only came with second chemo and now after third one. hip and joint pains are common side effects of chemo drugs. you need to talk to oncologist about these horrible side effects. hope to see you feel better soon

    Heart


  • rodeogirl
    rodeogirl Member Posts: 52
    edited March 2016

    thanks for your advice and support everyone- i will ask onco again about hormonal s - im pretty sure im not tolerating the ac- had to go to hospital again this time- vomiting and seizures- they did reduce my dose of red devil to 75ml and the the other to 700 because i lost over a stone- i just hope all this chemo works so i can spend some time with my son :)

  • rodeogirl
    rodeogirl Member Posts: 52
    edited April 2016

    well chemo cancelled again due to low blood counts- and i have just returned from hospital with probs with my heart- every time i stood up my heart would race to 150 plus- and i couldnt breath- checked out for bood clots my heart works fine when laying down- they put it down to dehydration but i didnt do anything different than i normally do. I have not had a normal day since starting chemo- and im off to the doctor now because of a sever sinus infection i picked up in hospital- there is no way i can do chemo tomorrow. when i was in hospital all i could think of is i want to die of liver cancer not a heart attack :(

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