Gemzar/ Carboplatin chemo treatment

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  • Woodylb
    Woodylb Member Posts: 1,454
    edited March 2014

    P74 i am sorry you have to go through reoccurence and hope you respond to the treatment. I am having the same combo as well. Side effects are not bad so far except for tiredness. From what understood from my onco this regimen cam be given up to 8 sessions. Mine is 6 but i am getting carbo+ gemzar one week 8 days later Gemzar, one week rest. After 3 sessions i had a scan and they came back with asatisfactory  response. I did my  fourth 2 days ago . I will have my next scan in may.  Do not stress yourself of how many sessions you can get out of this. Take it one step at a time otherwise worrying will bring you down. Instead i second slowloris sentence LIVE and enjoy each day to the fullest. Keep us informed. 

  • amgsc
    amgsc Member Posts: 16
    edited March 2014

    Hi everyone! Haven't been on here in a while but I have had continued success with this treatment. My MO seems to think that I can stay on it for a while since I have not had bad SEs. She has spoken to both M.D. Anderson and the chief of surgery at my center about removing the part of my liver where my cancer is! We would do the mastectomy at the same time. I would pick up with the Gem/Carbo after the surgery and do another scan to see if they have removed all of the cancer that I currently have. I met with the surgical oncologist, he specializes in the liver, on Monday and I'll see my MO next week. This is not done very often with breast cancer patients so I will definitely keep you posted.

  • prnciss74
    prnciss74 Member Posts: 16
    edited March 2014

    Woodlb - Thanks for your words of encouragement.

    amgsc - Great to hear of your continued success on treatment.

  • Linda-n3
    Linda-n3 Member Posts: 2,439
    edited March 2014

    Well, I am really not happy with the roller coaster ride this gemzar is giving me. I was to get #4 infusion yesterday, platelets were fine, wbc's just a tad low, but absolute neutrophils too low, so no infusion. Spent all morning waiting for labs, with a rather uncomfortable IV in place, only to be told "no go today." Unfortunately, MO is out this week, as are most of the rest of them to some conference. I sure hope they are going to find some good news for some of us! 

    In any case, I am pretty discouraged today, aggravated because I can't seem to PLAN ANYTHING and this is causing me a lot of distress. I know it shouldn't. I know I should "relax, breathe, accept." But I am having trouble with that today. Am just feeling very sorry for myself. Then my neighbor called, stopped over for coffee, brought her 2 girls (ages 8 and 10) who are home schooled over for a little visit. We chatted, the girls did some drawings in a couple of sketch books that I had gotten on sale a few years ago and had not used, and probably won't anyway, so it made the morning a little brighter, and I found that little bit of gratitude that was missing earlier.

    My arm is very sore from yesterday's IV, so am using warm packs on it. Nurse is supposed to call this afternoon to discuss maybe getting my labs done locally the day before infusions are scheduled so I don't make a big trip in for nothing next time, and maybe re-schedule for next week. Meanwhile, I am going to make the most of this "reprieve" and enjoy feeling better for a few more days, because honestly, I have not felt "well" since last week's #3 infusion. When the MO gets back, maybe I will talk to her about the every other week schedule that some of you are on. Will also ask her about neupogen support.  I also felt some distress as I know my cancer grows very rapidly, and it has not been getting larger since starting gemzar, and I am hoping that it actually gets smaller if I can tolerate the drug.

    Sorry for the long post. Just needed to vent a little.

  • slowloris
    slowloris Member Posts: 128
    edited March 2014

    P74,  So is it in the axillary nodes, or in some of the remaining breast tissue? 

    As far as how long you can be on this tx, my MO said it could be indefinitely. In my case, my body will probably get used to it, and eventually the cancer will start to grow again. At that time, they would switch chemo again. I think that for me, the only hope for a "cure" would be when they finally perfect immunotherapy/gene therapy treatment. In the meantime, I'm ok with living with a chronic condition, as long as I don't exhaust ALL of my options. I figure diabetics and some leukemia patients live for many years while they are on maintenance drugs, so why can't I?

    I will find out more on Friday when I see my MO, as far as when she wants another PET and if we are continuing with a gradual increase in dose. Pray for some good platelet numbers!

  • slowloris
    slowloris Member Posts: 128
    edited March 2014

    Linda, I know EXACTLY how you feel. It happened to me when they refused to give my 2nd round bc of low counts. I flipped out on the PA. (she has since seen me , told me she was afraid to read the next blood work bc she didn't want to have to tell me again! thankfully, I was fine that time. I guess I showed my displeasure a little too forcibly).

    For many of us, especially those with tnbc, we know how fast this S--T can grow. and when we are not on tx, we feel that time is wasted.  It's a fine line to manage risk vs benefit, so we can only do our best to be our own advocate and question why decisions are made. Any decision should be a joint effort, with the MO considering your ideas and suggestions also. I hope the next few rounds treat you kindly.

    keep us posted on your journey.  <3

    Lori

  • prnciss74
    prnciss74 Member Posts: 16
    edited March 2014

    Linda - so sorry today didn't go as expected.

    Lori - My cancer is in the axillary nodes under my arm only. They weren't able to tell me how many but due to the size I'm guessing quite a few. First dx they removed some sentinel nodes and they came back clear so who knows where it came from. Wondering if it was there all along and the first chemo just didn't work. I'm kinda glad with this one I will actually get to see if it's working. 

    I like your way of thinking of it as a chronic condition.... :) 

  • Woodylb
    Woodylb Member Posts: 1,454
    edited March 2014

    amgsc, great news ! I hope the operation is successful in removing all the tumor in your liver , i read an article about it , some people go in remission for a long time . I hope it is your case. My prayers are with you. Please keep us posted. Best of luck. 

  • Woodylb
    Woodylb Member Posts: 1,454
    edited March 2014

    slowloris, i start my neupogen  ( neulesta) injections right after the gemzar session for 5 consecutive days , it is helping me to get my dosage on time  and keeping my wbc in line. How many are you getting? 

  • slowloris
    slowloris Member Posts: 128
    edited March 2014

     woodylb,            Neulasta is a stronger marrow growth factor than neupogen. It is 1 shot the day or 2 after tx, and you can't get addt'l tx until atleast 2 wks later. It is usually given only with DD (dose dense) tx. Neupogen is less strong, essentially doing the same thing, but requires 3-5 shots on the consecutive days following tx. I beleive you can still get tx the wk after, but not sure. I am now getting Neulasta to give my marrow more time to replace platelets and wbc's. I just seem to take longer than most others. But this has been my history, since I reacted the same way to AC/T. The down side is that Neulasta may cause more bone pain the neupogen. For now, I only experience a slight discomfort in my breast bone area, but nothing that is so bothersome that would stop me from getting it. Pain can also be in hip bones - both areas of greater bone marrow growth.

    Tomorrow I go for another round... hoping for some increase in dose.

  • Woodylb
    Woodylb Member Posts: 1,454
    edited March 2014

    slowloris, thank you for answering me, i know about neulesta, but here they seem to prefer neupogen. With ACT i got a lot of bone pain,hips, knees everywhere. This time around it causes me only tiredness. The important thing is for you to be able to get your infusion. Tnb responds well to chemo specially from ductal origin, so i am hoping you will respond well to this regimen. I sincerely hope you go NED :). My doctor told me tnb and ductal can go NED but very rarely lobular. Mine is lobular. My friend is tnb and has been clear for 22 years. I wish the same for you. Keep me posted on your status. Wishing you a lot of strength so you can beat this beast. Xxx

  • Linda-n3
    Linda-n3 Member Posts: 2,439
    edited March 2014

    slowloris, thanks for the info on the difference between neulasta and neupogen. I got neulasta with taxotere and did fine overall - yes, a little pain, but I could handle that. I will discuss with my MO to see if it is in  my future as well.

    Well, the bad news was that the day after my chemo delay, I got a horrible belly pain and vomiting, my PCP sent me to the ER, they found a "partial obstruction" and my WBC count was UP! SOOOOO - the good news is that I got my chemo today so I am nearly back on schedule. Feeling better overall, still not sure about the belly thing except that I do have a mass right in the middle of my abdomen, so that may be shifting and putting pressure where it shouldn't, so I am hoping if the chemo works fast enough it might shrink and that would keep me from having repeat attacks (it happened on Christmas Day, but it also resolved fairly quickly, so nothing done at the time).

    I just realized recently that most everyone here is TNBC. I am Er+, but my MO explained that eventually the cancer cells that initially need estrogen to grow with find other ways to grow if the estrogen supply is cut of (like with tamoxifen or an AI), and so then they begin to behave like triple negatives. I guess this is one reason she has me on the gemzar. I just found that interesting ... didn't really think about it before.

  • amgsc
    amgsc Member Posts: 16
    edited March 2014

    Linda, I'm sorry that your treatment has been delayed. I know how disappointing that can be. If it helps, my gemzar/carbo treatment has been cancelled several times for the same reasons yours has and I still had regression with my liver tumors. I hope the same happens to you. I will be praying.

  • Woodylb
    Woodylb Member Posts: 1,454
    edited March 2014

    Linda, i am sorry your dose had to be cancelled, it is frustrating but now that all is back to normal , i hope you get good results from this combo treatment. I am ER+ , but my doctor preferred chemo as a first line treatment and because it gives him a faster results. Cancer can become resistant to anti hormonal treatments . I hope the mass in your abdomen resolves quickly and does not cause you any problems. Most the ladies here are tnb and Idc i seem to be the only one with lobular cancer:( so i don't know how well mine will respond to chemo till now it seems to have stopped the progression and the biggest tumor shrank a little. Good luck to you and keep us posted. 

  • Linda-n3
    Linda-n3 Member Posts: 2,439
    edited March 2014

    Thanks for the encouragement, ladies. Turns out I have a partial bowel obstruction, and that "mass" is NOT cancer!!! I am just FOS (full of sh*t)!  Well, not really sure - no cause confirmed - could be adhesions from surgery in 1988, could be from pain meds slowing down the bowels and just getting full, could be some other cause ... in any case, I am happy it is NOT a tumor mass!!!!! The pain is less, the vomiting has stopped, and theoretically, most of these resolve over a few days or weeks. 

    I did get my gemzar yesterday, and am doing surprisingly well! Knock on wood! 

    Woodylb, I think the ILC is more challenging for the MOs to treat, even if it IS Er+. My understanding is that for the IDC, faster higher grade tumors respond to chemo because chemo works best for fast-growing cells, but the anti-estrogens work better for lower grade, slower growing tumors, so they often start with the hormonal therapy first and add chemo later, like when the cells get resistant to the hormonal therapies (mine became resistant last fall). But ILC is a different animal, I don't really understand how the different meds are used or in what order. How are you handling the combo so far?

    amgsc, glad to hear your tumor is shrinking!

  • Woodylb
    Woodylb Member Posts: 1,454
    edited March 2014

    linda congrats because your mass isn't cancer , i am so happy for you. I am happy also you got your gemzar and that SE's are fine. It is quite tolerable, you may get throat or mouth sores after 3 days use the magic mouth wash it works quite well, just in case. I am tolerating the combo very well till now, thank god. My MO knows thar chemo works very slowly on ILC but he said it will take the anti estrogen 3 months to work , he didn't want to give the cancer that long. He is not expecting a lot of shrinkage, if he get 25% he will be very happy. Till now my first scan after 3 sessions dhow 8% shrinking on the largest tumor the small one did not change but became less prominent , there is no progression he was very happy with this. He will continue if he gets his results with aromasin. I was retested again for hormones after the liver biopsy and i am still 85% estrogen + , femara succeed for three years in slowing it. It is ture my cancer is slow growing therefore chemo is less effective on it. I cross my fingers and count on my faith that it will hold it for a while. He told me as much about IDC. The behavior is different but at the end there is no good cancer or a bad one. It is just damn cancer lolll . It takes courage and all of us ladies have enough of it to fill the entire world and still we are here :) and hope to stay for a long time. 

  • Linda-n3
    Linda-n3 Member Posts: 2,439
    edited March 2014

    Yeah, Woody, I am at the point where I am just happy with NO PROGRESSION! Nice if the tumors decrease, but at least they are not growing!!! MO says we will have a better idea after next cycle, which I will finish in 3 weeks, so keeping my fingers crossed with you! May it work for both of us and all the rest of you on this drug.

  • Woodylb
    Woodylb Member Posts: 1,454
    edited March 2014

    thanks Linda, no progression is good for the time being , and sometimes it stays no progression for a long time. The drug seems to work on IDC there is a thread of 12 years survivors liver mets , a lady named Denny she is a 12 years survivor with gemzar and herceptin. Now she is on new med and i am sure she will pull through. There is hope but it takes patience , endurance and a lot of faith. We cannot count on herceptin but this combo seems to work on liver mets . I hope pretty soon you will see some decrease also . Keep me posted on your progress.  

  • slowloris
    slowloris Member Posts: 128
    edited March 2014

    Popping in to say hi!  Linda, I'm with you, I can live with some nodules on my chest, just get me to NO PROGRESSION!!!  

    I had another round on Friday, neulasta shot today. I'm feeling a little blue... I think either C/G , Neulasta, or both trigger mood swings. That, and I think I feel 2 more small lumps coming up (if so, that'll be 10 that I can feel on  my chest!). 

    My platelets were still a little low, but we went ahead anyway with tx. My Mo is going to see if she can get me into the trial for tnbc that deals with trying to stop the cancer stem cells. She mentioned the drug, (I forgot exactly what it was) but it's used in conjunction with taxol. Hopefully it's not DD because I did not do well with that initially. It gave me extreme nerve pain.

    First thing to do is to get another PET, which is scheduled for next Monday. Lets hope for no progression!!!!

    Hoping everyone continues with good results. Since se's are few, I hope this continues to work for a while before I can get into a trial. So far, each cocktail seems to only last me about 3 mo's. I don't want to run out of options.

    STAY POSITIVE!  (I keep telling myself that)

  • Woodylb
    Woodylb Member Posts: 1,454
    edited March 2014

    slowloris, i hope your PET comes out no progression . The mood swings come from neulesta, i was feeling the same today and i feel the same everytime i start neupogen. It is worst than the chemo. I tell you the same STAY POSITIVE. My prayers are with you and with all of us. Pop in anytime to vent or just to say hi and keep us posted. Good luck on your pet. 

  • Linda-n3
    Linda-n3 Member Posts: 2,439
    edited March 2014

    Lori, sending you gentle hugs - sounds like you need a few. All the stress plus all the drugs can really do a number on our moods, that's for sure! Take about 2 minutes to just BREATHE with me and find something for which you are grateful. Today I am grateful for the all the people who love me, and who I love. 

  • slowloris
    slowloris Member Posts: 128
    edited April 2014

    Hi all. Popping in to say I'll be leaving this thread. It's been 3 mo's, and sad to say C/G no longer working for me. Good news is that brain MRI and PET scan show no organ involvement. The nodes and nodules however are mixed. Some have gone away, but new ones have popped up . So I am being switched to Halaven, and trying to get into a clinical trial for PD-L1. 

    I wish all of you success on this combo. Don't look at my case as the norm. For some reason, my particular cancer doesn't seem to respond long to any drug, except to the initial A/C, which they can use again more as a last resort (heart toxicity).

    so, Take care and good luck.  :)

    Lori

  • Linda-n3
    Linda-n3 Member Posts: 2,439
    edited April 2014

    Lori, I am not sure the gemzar is working for me, I have only had 4 doses total and I can't tell if tumors are same or larger or smaller. I am having a lot more pain issues. Best wishes on your next round.

    Has anyone had chemosensitivity testing done to see WHICH chemo might be effective for their cancer? I am thinking of asking for this - am tired of spending thousands of insurance money and hundreds of MY money for each infusion and not knowing if it is even POSSIBLY going to work .... at least if there is some indication in the lab that it MIGHT work, then I would be more willing to risk SEs and pay the money, but for a drug that does not seem to work in the lab against my tumor, I am just really really tired of the trial and error approach.

  • slowloris
    slowloris Member Posts: 128
    edited April 2014

    Linda, I too was wondering what my "oncotype" was for my tumors, not just the 3 big ones they test for (her2, er, pr). Not sure what they call it - genotype?  I don't know what the protocol is to be tested, although i have seen commercials for certain hospitals that say they do it. Penn actually advertised this, but I think it was for lung cancer. If I can remember to ask the MO, i'll see what she says the next time I see her. I would imagine, if I get into a trial , they  trial may as well. Perhaps there are just too many subtypes, esp with tnbc.

    Hope you notice a change soon. Some chemo's don't show efficacy until 3-4 rounds (2 doses =1 round for me)

    lori

  • Linda-n3
    Linda-n3 Member Posts: 2,439
    edited April 2014

    Started 3rd cycle, first dose today. MO doesn't think it is working, said usually if it works, it works very very well. So far, best I can say is "maybe stable" - not sure if tumors have grown. To be fair, I have only had 2 cycles, and so we agreed (at least I THINK that's what I understood) to do a total of 4 cycles, so 3 more infusions before I give up on this one. The only other thing she has to offer me are drugs that cause neuropathy, and I have been down that route and am unwilling to do it again. So it's either gemzar works or I am off to hospice. I am in tears today - didn't think it would be quite this soon, but I know it keeps getting closer and closer .... am really tired of the roller coaster anyway ... so discouraged .... I don't want to look at the future right now, I am just trying to focus on living NOW and in the moment. Some days easier said than done.

    We did discuss chemosensitivity testing, but truly, the only drugs left are ones I don't want to deal with anyway, so it really isn't going to be an issue for me.

  • Woodylb
    Woodylb Member Posts: 1,454
    edited April 2014

    Linda, 

    I am sorry to see you so depressed and giving up , i am doing the same combo , but my onc decided from the beginning on six cycles, i am on my fifth. However, i had scans after third cycle, the response is partial no total, one of the large tumor shrunk a little , but no new tumors nor progression. He wants to continue to six and he is not expecting full response but around 25% and he will move me on anti hormones. Linda as i saw your cancer is grade 2 and many positive lymph nodes , like mine. Except i am lobular , meaning i respond even less than you to chemo. Why isn't your doc proposing anti hormonal inhibitors? It seems you haven't taken any !! I cannot get NED but i will settle for no progression and some regression. Please, don't give up and don't think of hospice , you still have other options. Why don't you get a second opinion ? I am sorry if i seem to be imposing my ideas on you. It is not so , but i just don't want you to give up. My prayers are with you.  

  • Linda-n3
    Linda-n3 Member Posts: 2,439
    edited April 2014

    Thanks, Woodylb, I had been on afinitor/letrozole combo for most of last year, got 10 months stable with it. Problem is that it is now resistant to anti-hormonals - MO says the tumor cells initially need estrogen for survival, but then find a way to grow without it, so she tried several other drugs, like the mTOR (is that the afinitor? I can't remember right now) inhibitor. Basically, that drug that Pfizer has been sitting on for several years that helps re-sensitize the cancer to the anti-estrogen drugs MIGHT have helped extend the time to progression, but they are just now finishing up Phase II trials, will be in Phase III and MIGHT have it next year, but will probably be too late for me. I tried asking about compassionate use, and MO checked into that but couldn't get it. 

    I DO have some other options but the SEs are just not something I am willing to deal with. I got peripheral neuropathy from taxotere, and I am just now getting to the point that I can use my hands for some of my hobbies - still cannot do fine needle work or anything that requires fine motor/sensory skills, and all the drugs left to me can exacerbate that. I just don't want the last months of my life to be spent in misery with useless/painful hands, I would rather have less time but better life DURING that time. This is a very very important life value for me. So I cannot take any of the taxanes, had mild heart damage from anthracycline so those are out, and most of the drugs available right now are modifications of these, supposedly with "fewer" side effects. I don't know, maybe I will reconsider in the next month or so - I am woman, and I can change my mind if I want! LOL! 

    Sorry to be so wordy. Actually, today I woke up feeling pretty darned good, had a very full day with a couple of meetings, coffee with a friend, and am headed to choir practice tonight. And I just had gemzar yesterday, so I am pretty pleased overall that I feel so good. I am hopeful that this really WILL kick in with the next few doses, at least to get me stable, and I truly did just start the 3rd cycle ... so today, I am truly much more optimistic than I was yesterday. Thank you so much for your care and encouragement.

  • Woodylb
    Woodylb Member Posts: 1,454
    edited April 2014

    My dear linda, i am so glad you are feeling better today and i feel you have more hope. Hope is the key word for enduring cancer there no other. Gemzar i well tolerable i got no neuropathy from it , i got this one from ACT i still habe some reminders till now. Massages helped me after the treatments as well as some yoga. Still gemzar alone may work on your mets as it has a good track record in effecting liver mets. Also , there is a lady named Kathlyn Rich her she ha d become hormone resistant her onc insited on giving her an old anti hormonal called Cytadren and ot worked on her. Check this with your onco , you have nothing to lose. If this happens to me i would try it also. mTor is affinitor it is working on some and on others it is not. When i was dxd the second time with distant reoccurrence one of the best onco in my country suggested i start on this combo affinitor+ aromasin but my treating onco refused this option he said maybe later but for now you are healthy and i want to keep you healthy and give other treatments and then if there is a need we will consider this option. The main thing is not to throw up the towel yet. And no one can tell when it is one's time . You will know inside you. But for now i think you still have a lot to fight for so keep the fight until you know and feel that it is time.  Do not worry about how much you write , write as much as you want and as often as you want. I don't mind at all if you like you can pm  me also . I am always checking my mails. Somehow this give me a lot of strength and a sense of balance and it rewards me even if i can help one person or ease their worries, and i get the same from the stories of others. All these ladies here are such wonderful ladies and it is an honor to converse and exchange ideas with them. Let me know your progress always . Big hugs.

  • Linda-n3
    Linda-n3 Member Posts: 2,439
    edited April 2014

    Woody, thanks!!!! Will keep in touch.

  • Woodylb
    Woodylb Member Posts: 1,454
    edited April 2014

    Anytime Linda. I just noticed that you got afinitor with letrozole if you are postmenopausal then afinitor should be take with aromasin (exemestane) , they are given together for best results. Or each alone. I just thought you should knw this, even if you research afinitor it is advised with exemestane. Stay well and let's keep in touch. Hugs. 

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