Just Diagnosed : Liver, Bone Mets and Malignant Pleural Effusion

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Well, it's been almost 4 years since my first diagnosis of breast cancer and I must admit I was really hoping not to graduate to stage 4 but here I am. I'm wondering if any of you out there with the same combination of metastasis might be willing to share your experiences. I'm feeling somewhat lost at the moment.

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  • Jaytee
    Jaytee Member Posts: 1,211
    edited June 2014

    Hi Emily....I was just diagnosed last month with lung and liver mets...know the feeling. I was 3 years in remission from stage 2b.  I just got started on my treatment last week so haven't much advice to give other than a big hug and to tell you that you are not alone. I'm sure that others will be along that have been on this path for awhile....I get encouraged reading their posts. Hope you will too. Have you started treatment yet? I will be back later..going to work a few hours today.....hang in there and you are in my thoughts and prayers today.




  • barbe1958
    barbe1958 Member Posts: 19,757
    edited June 2014

    Hey Emily, I remember you! A fellow Ontarian here. I am so sorry that  you have advanced, that just SUCKS! Please know that you are in my prayers.

  • EmilyInOntario
    EmilyInOntario Member Posts: 626
    edited June 2014

    Hi Jaytee...so sorry that you are also on this journey *hugs* Thanks for the thoughts and prayers. I am waiting for my first chemo appointment to be booked next week . Paclitaxel is on the  chemo I.V.menu. Prior to that I have some tooth extractions booked, pleural effusion drainage Monday and a port-a cath insertion to be done. I wonder what shape I'll be in by the chemo date.

    Question: Lung mets is different than pleural effusion mets?

    Hi Barbe..I remember you too! Thanks for the prayers.

    Praying for all my  breast cancer sisters.

  • barsco1963
    barsco1963 Member Posts: 2,119
    edited June 2014

    Hi Emily - I am also a fellow Ontarian (liver mets). So sorry that you have found yourself back here and at stage iv. You have a lot on your plate even before you start tx. Best of luck with everything. I sure hope that chemo will kick those mets back to nowhere land but leave you with minimal SEs.

    You may find more women with similar dx and chemo if you post on the stage iv boards as well.

  • barbe1958
    barbe1958 Member Posts: 19,757
    edited June 2014

    Emily, the pleural is a lining around the lungs themselves, think like the lungs being inside a balloon, so the pleural fluid is between the outer lining of the lung and the "balloon" skin. Lung mets is nodules or lesions inside the lungs themselves. I'm being investigated for that right now so I read up on it and that is how I understand it. Someone correct me if I'm wrong....

  • edwards750
    edwards750 Member Posts: 3,761
    edited June 2014

    That does suck Emily. Just curious did you have the Oncotype test? I am IDC Stage II, Grade 1. Had lumpectomy and Rads; currently on Tamoxifen. I know the greatest risk/recurrence chances occur in the first 3-5 years. No guarantees. It's such a crapshoot. Good luck. 

    Diane 

  • EmilyInOntario
    EmilyInOntario Member Posts: 626
    edited June 2014

    Hi edwards...not familiar with the Oncotype test? What is it? I do know that the mets I have have remained ER +  despite being on Tamoxifen since 2011 and the oncologist said sometimes the cancer can get around that which is why the tamoxifen didn't work. I know that's a poor explanation but I'm still learning. Just my bad luck and yes it really is a crap shoot.:(

  • EmilyInOntario
    EmilyInOntario Member Posts: 626
    edited June 2014

    Thanks Barbe. I probably worded my question poorly. I am wondering if when people say they have lung mets they can mean either they have malignant cells in the pleura or a malignancy in the lung itself. Does the term lung mets cover both or are they defined differently?

  • EmilyInOntario
    EmilyInOntario Member Posts: 626
    edited June 2014

    Hi barsco..thanks and sorry you too are in the "Mets Club"..:( *hugs*

  • EmilyInOntario
    EmilyInOntario Member Posts: 626
    edited June 2014

    Barbe...best wishes for you and hope the investigation for lung mets is negative..*hugs*

  • Jaytee
    Jaytee Member Posts: 1,211
    edited June 2014

    Emily......you have so much going on with the progression issues...and dental work on top of it too!  More hugs and prayers coming your way. My stage IV diagnosis was based on the pathology report from the fluid drained from the pleural effusion. I need to talk to my onc in more detail about the lung mets too...I had been in such a flurry of tests and was also on pain meds for pain on the liver side.  I always think of questions to ask after I see the doc. I will see her again before my next treatment on July 2.  

    I had my port put in the day before my first treatment and I was feeling pretty ragged out by then....but it felt good to get the treatment started! 

    Take care....one day at a time ....you have a chemo buddy here if you need one!

    judy


  • EmilyInOntario
    EmilyInOntario Member Posts: 626
    edited June 2014

    Thanks Jaytee..always good to have a chemo buddy!  I didn't have a port last time so no idea what that's going to be like. I have that done next Wednesday. How often have you had your effusion drained or do you have a catheter in place in the pleural space?

  • Jaytee
    Jaytee Member Posts: 1,211
    edited June 2014

    I only had it drained once.....they told me there was a possibility that it might need to be drained again, but so far that has not been the case. I think they drained 1500 ml...I can't find my notebook that I have been carrying with me everywhere. During all the initial testing, I had it with me all the time...cause I was getting calls at work and home as everyone tried to squeeze me in for all the appts. I think my path report is in there.  Getting that drained helped immensely with the cough I had. Hoping that the treatment will take care of the lung mets....sounds like I am going to have some scans after 3 treatments and will decide to continue with this regimen after those results.

    The port does make it easier to take the treatments and also for all the blood draws. Because I was getting my first treatment the day after the port placement...my oncs office contacted the surgeon and they left the iv access connected so that it would be easier to get started the next morning...my onc nurse thinks I still look a little swollen . I have a power port....had one before and didn't have any problems with it...you get a funny taste in your mouth when they flush it. Some people say to suck on a mint or hard candy when they do that at the end of each treatment. 

    I wish you peace and calm as you get all these procedures done.  When are your dental extractions? Will pray for quick healing after that. Have you been able to sleep? I hope you will have a good night's rest tonight.  Goodnight Emily..........judy

  • barbe1958
    barbe1958 Member Posts: 19,757
    edited June 2014

    Judy, what an amazing tip about sucking on a mint!!! I've been on this forum for over 5 1/2 years and never heard that before. I hope you share it whenever you can. Good luck to you, too!

  • Jaytee
    Jaytee Member Posts: 1,211
    edited June 2014

    Thanks barbe...have to admit I had not heard it before  until I read it on a post the other day!   There is so much to learn on these boards. I did not even know about BCO during my first treatment. So thankful to have found it!

  • jacee
    jacee Member Posts: 1,384
    edited June 2014

    ladies....just saw the post and wanted to send you all a big hug! There is always so much hope as the years pass, and I hate reading of progression at any level. I am 5 years out from diagnosis, but know with every ache and pain, I'm just an appt away from Stage 4. 

    Barbe, good to see you and praying you get the all clear. 

  • dlb823
    dlb823 Member Posts: 9,430
    edited June 2014

    No words of wisdom, Emily... just a (((hug))) and wishes that things settle down for you, and that whatever tx you get on will totally zap whatever's going on.  

    Barbe, why are you being investigated for lung issues -- concerning symptoms or something seen on a scan?  As you probably know, scans are notorious for picking up pre-existing stuff -- artifacts from pneumonia or other similar lung issues you may have experienced years ago.  Hoping that's the only thing going on!!!     (((Hugs))) to you both ~  Deanna

  • MameMe
    MameMe Member Posts: 425
    edited June 2014

    Hi Emily, I, too, have had cancer before and now find myself in tx for mets. I was dx,d in April this year, and immediately put on weekly Taxol to prevent further vision loss in left eye. They figure that the lungs, bones and nodes will respond as well, which from my comparative scan last week, they have. Modestly, but in the right direction. 

    My best wishes to you, and the weeks of tests and port placement were really the toughest time for me. Take it really easy and accept all the help offered. It takes time to assimilate the diagnosis, also. I was thinking qbout it all the time in Pril and May, but now only half the time. Improvement!

  • EmilyInOntario
    EmilyInOntario Member Posts: 626
    edited June 2014

    Thanks jacee, Dlb and Mame. *hugs to you all*

    Mame: Yes, the weeks of tests and procedures are overwhelming. I don't know how I've held it together this long but we all seem to, don't we. Today I learned I'm starting chemo next Thursday, the day after the port placement. I'm not sure what to expect with the port insertion. How are you finding the Taxol?  Looks like that is the generic name for what I'll be on, three weeks on and one week off. Glad you've had some response. How many rounds have you have so far?

    I'm hoping soon I'll be able to wake up in the morning with my first thought NOT being: " I can't believe this is happening to me"

  • DC197
    DC197 Member Posts: 371
    edited June 2014

    Em,

    Are you having the tooth extractions because they are going to give you a bisphosphonate?  I get a Zometa infusion every 2 months for the bones, but there is some risk associated with it that may cause necrosis of the jaw.  The last 2 weeks I have been having some jaw pain on the right side and I'm hoping it's just TMJ pain. I've been getting Zometa for 3 1/2 years and worry about it. Good luck to you with the extractions and with the port placement. Hopefully, things will begin to settle down once you begin treatment.

    (((hugs)))

    Diane

  • EmilyInOntario
    EmilyInOntario Member Posts: 626
    edited June 2014

    Hi Diane *hugs* Good to see you.

    I had issues with two teeth before I got my mets diagnosis but they had settled down with antibiotics. Now however, with chemo and the bone drug imminent I was advised to get them out now. They are now out. Glad that's over with.

  • MameMe
    MameMe Member Posts: 425
    edited June 2014

    Emily, I have had 11 weeks of weekly Taxol, and since its doing some measurable good, will be continuing on it for another few months. Then I expect to start an AI of some kind. There is a thread called Weekly Taxol that you might find interesting. I think weekly is better than the every three week pattern, as the dose is lower and SE,s are more moderate. It took three weeks to begin to feel like I was getting the hang of chemo. I have fatigue that bothers me, but I can rest as needed. Not bad as far as nausea or heartburn goes, as long as I take the meds for those symptoms as needed. Good luck this week. 

  • Teri64
    Teri64 Member Posts: 3
    edited June 2014

    Hi Emily. I was first diagnosed with breast cancer in 2000, made it to 2012 and found out it returned. They have been following "protocol" with the treatments and what was once just in the lymph nodes is now in the liver and I have pleural effusion. I was going in getting drained about once a week and then they ended up putting ports in so I can drain at home. I have to say it is much easier than making the trips to the hospital to have them done. Hugs and prayers to all. 

  • EmilyInOntario
    EmilyInOntario Member Posts: 626
    edited June 2014

    Thanks Mame ..it's good to know this time chemo might not be as bad as what I had 3 years ago. I'll look for the weekly Taxol thread. Did you lose your hair and how soon do they check to see if you are responding?

    Hi Teri... I'm considering having a port put in to drain the effusion. I have been drained twice in two weeks and seem to get short of breath again quickly. How uncomfortable is the port? That was a deterrent for me.

  • Teri64
    Teri64 Member Posts: 3
    edited June 2014

    The ports don't really bother me, just a little uncomfortable when sleeping on my side. I'm still glad I had it done! At first I had someone do it and then I just started doing it on my own.  Just a helpful hint, if you have sensitive skin you may want to get skin prep, it makes it easier to take off the dressing.

  • Jaytee
    Jaytee Member Posts: 1,211
    edited June 2014

    Hi Emily........just checking in to see how you are doing after your first treatment. Hope you are feeling okay.  Take care.....try to eat well, and get all the rest that you need.  Thinking of you today........judy

  • EmilyInOntario
    EmilyInOntario Member Posts: 626
    edited July 2014

    Hi Jaytee....first treatment was rougher than I expected. I expected it to be a bit gentler than it was.I think oncologist is considering changing me to Abraxane for this Thursday. Thanks for thinking of me..:) How are you doing?

  • MameMe
    MameMe Member Posts: 425
    edited July 2014

    Emily, I started weekly taxol on April 9, was scanned the same week, and again in mid June. Some regression of pleural mets, chest wall mets and lymph nodes was shown. I have the tumor in my left eye measured for changes evey month, also. That has shown some regression as well. I go again tomorrow. Hair loss, a steady shower of hair falling out, I have not buzzed it due to preference, yet did get a pixie cut six weeks back. That has really helped me work with the thinning hair. I wore a wig twice recently, mostly for blending in. Hot, itchy after first few hours. I wear a lightweight hat with a brim sometimes, and have a women's ballcap that looks like an engineer hat a bit. I HATE feeling so unattractive while feeling crummy from tx. Its hard. But I know I am not alone!

  • EmilyInOntario
    EmilyInOntario Member Posts: 626
    edited July 2014

    Hi Mame..so glad you've had some regression. The hair loss really is adding insult to injury isn't it. Not looking forward to losing my hair AGAIN. It never came back as thick from the last chemo 3 years ago. I do have some nice wigs from the last round but in the summer heat I expect they won't feel very comfortable.

  • Jaytee
    Jaytee Member Posts: 1,211
    edited July 2014

    Sorry to hear the first treatment was so tough....I guess it has to be to kick that cancer to the curb! Hang in there and I will do the same.  Just had my second treatment today. I will go back in for a neulasta shot tomorrow. The taxotere really knocks my wbc down. I have been losing a lot of hair since last week too, so after this one,  it will be time to get the clippers out soon. Was not looking forward to the hair loss either. :(    I have to really make myself eat this time...don't seem to have much of an appetite. They sent me home today with some Boost protein drinks....hope they don't taste too bad!  

    Take care........judy


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