HERCEPTIN and/or PERJETA Threads
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That's great news jen76! There have been many stories of good responses from this protocol. It's so uplifting!
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wow! This thread is really taking off! Welcome to all the new folks and congrats to everyone receiving good news.
I'm an hour into a four hour scan-a-thon. First CT scan in 6 months and first bone scan since dx over a year ago. Feeling pretty good, so not too nervous about results. We all know how sneaky this beast is, though.
October has been a rough month for me, stressful for all of the usual October reasons and then some. Decided to look up a former co-worker who I hadn't heard from in awhile and found out she died of cervical cancer last year right before my dx. She was 6 months younger than me and died at 40. I was shocked. She never even told me she was sick ( we were friends when we worked together 10 years ago, but lately had been more of just Facebook friends). Then last week my husbands good friend's girlfriend died of a stroke. She was in her early 60s. My husband is trying to figure out how to best help his friend through the grieving process.
I'm left with a deep sadness, but still thankful for the drugs I'm on and the respond I've had. If these scans are good we will discuss a mastectomy, which they didn't want to do when the bone mets were found. I'm feeling unsure, as they said at first that it would not effect survival and I don't want to put my body through surgery if it won't make a difference. Hard decisions ahead.
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Hang in there, Shutterbug! Sorry to hear about the sad news, but happy to know that you are doing well in treatment. My oncologist has also brought up the possibility of surgery for me (note, I have heard zip from the surgeon), and, like you, I am not especially eager to have it. You are a little further along in this - journey - (hate that word), let us know what they say and what you decide.
sj
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Shutterbug - Sorry to hear that your October was full of sadness. You are obviously very empathetic and kind when the well being of others affects you deeply; especially when you have your own troubles. I'm sure your November will start on the positive with good scans!
I had a bx only because my onc put the horse before the cart before my bone mets were found. I have mixed feelings about it. My onc said it was to my advantage to have the "mothership" removed. I haven't done reconstruction as I can't see myself being in anymore discomfort than I already am. However, sometimes I think about doing it.
Thinking of you all,
Karen
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thanks Happy Hammer! It's my first round for this combo and I did get better by Sunday. I also started to take the anti nausea meds earlier in the day and it helps. I am very tired now but I think because I don't rest enough. My kids kept me busy for Halloween. Trying to rest now that they are in school but then I started having major back pain were my tumors are. There's always something! But Ill take it as long as I'll get good results from this combo like most of the women here! Praying and hoping! Thanks again!
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shutterbug, hang in there. I'm praying for good scan results for you and so sorry about the sad news.
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Sending all my good karma your way, Shutter. Blessings to everyone - we are a tough gang! Love to all, SUE
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shutter--hoping for good results!
I had a ct scan this am as well. It was supposed to be in December, but they moved it up because of new complaints from me (shortness of breath and gi issues). Scan came back stable and unchanged! Yay! So that's over 3 yrs on this combo.
I am frustrated though. My onc said that I would not develop new se's from this combo. Whatever se's I've had will be all that I get and he doesn't think they will worsen. I had no idea. I'm frustrated because I'm 37, functioning like I'm 67 (no offense anyone). The fatigue is hugely impacting my qol. He said he thinks it has more to do with my anxiety/depression meds...I have an appt with that dr in two weeks. He also wants me to see a pulmonary dr. to check lung function.
I just hate to see the sadness in my kids eyes when I tell them I'm too tired or I can't do something.
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K - I hear ya, hon. Some days (like today for instance) I am just completely fed up with the side effects from this wonderful combo that we are on. We are allowed! I am 66 years old (smile) and today felt like I am 96. But in the words of the late great Elaine Stritch "I'm still here" and it's hard to argue with that. Very glad for your good results, K. Let's keep on dancing - SUE
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Thanks for the good thoughts and well wishes everyone. KJones - Hip Hip Hooray for good results on your scans! I'm sorry to hear you are dealing with worsening SE's. I've been wondering about this more and more myself. While I've tended to fall on the side of the Big C, but I'm now starting to notice more of the Big D in the week or so after my H&P. Also noticing lack of energy, most nights I come home from work and simply veg or nap. I'm not sure if that might be because of the shorter days or my low mood or a little bit of all three.
One good thing: Saw Norah Jones in concert last night...a surprise from DH. Three full hours of not thinking about cancer or scans or anything. Just soaking in the music. I adore her and it was exactly what I needed. Stayed out too late though and paying for it today.
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Shutterbug - I love Norah! I'm jealous. Just kidding. So nice that you had a lovely evening and surprise.
My side effects, especially the fatigue has increased. I have about a 6.5 hour window each day where I feel "ok". Then I drag my butt the rest of the day. I am still working outside the home and still enjoy it. However, I use up all my "ok" time at work. Some days I struggle with this.
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KJones, Mikrae, Shutterbug and anyone else feeling like their side effects are increasing as time goes on-thank you, I'm having the same problem! Fatigue and lack of appetite for me. Most of what you read about H&P (especially Herceptin) is how easy it is, so I feels so wimpy or like I'm doing it wrong. It seems weird to have such a dramatic increase in side effects after doing fine for 18 months. I stopped Perjeta in June so no more diarrhea, but nothing else has improved. On short term disability right now, but I'd prefer to turn back the clock to last year when I was having no trouble working part time while on treatment. Grrr-so frustrating! But scans show it's working so trying to focus on the big picture. Hugs to all, I appreciate reading about everyone's experiences-it is so helpful!
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So thankful I have this site to go to! So happy for you who are all stable or NED. My wish is to be there someday! But I just started so I have ways to go! Then I have told my work that I'll work thru my treament and now having second thoughts.
kjones, I kinda know how you feel. I have 2 school aged kids and I feel bad when I can't do much with them bec of pain/fatigue. I am not looking forward for the holidays.
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I thought I would work thru treatment too. I had others tell me--so and so worked through treatment...so I thought ok I can do the same. NOPE! I tried, but it didn't pan out. And I'm glad it didn't. It took all I had to take care of me and try to be with the kids in some form or fashion. It sucked and it was hard. I remember on thanksgiving day that year (2012) the family came to my house. They brought the food. I sat at the table for maybe 30 minutes and then I had to go lay down. Christmas was similar. It sucked because it was not what I had planned and not what I wanted. Looking back I did the best I could at that time. The kids don't even remember it. They just want me here. Doesn't matter how I'm here, just here is enough.
Much love
Kristin
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I intended to work through treatment but 5 weeks into chemo I went on sick leave. I have read where some women manage well on Taxotere. I wasn't one of those women. In retrospect, I should have taken the entire time off. The stress of being so ill and working was terrible and likely set back my recovery. Not that we actually recover. I'm sure you all know what I mean.
Kristin - Your last post was incredibly touching. Brought me to tears. I agree, our kids just want us here.
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i worked through 9 rounds. Did my treatments on wednsday and i would feel the worst on the weekends. So i pretty much stayed at home in bed watching tv. And i took my nausea meds starting on friday i did not want to play catch up. Its what got me through;)
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I agree with Jen. I did mine on Wednesday also and felt fine until the weekend and then better on Monday. I took my nausea meds from Wednesday until Monday. Hope everyone is feeling better. The weekend is almost here. XO
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I was very lucky that my employer allowed me to work from home when I need to when I was on Taxotere (I could still work from home now and then, but I prefer to be in the office). That allowed me to not have to go out in the bad weather and also to pace myself when I wasn't feeling 100%. I could stop and lay down for a few minutes if I needed to and it saved the 1 hour of commute time. I had my treatment on Monday and the effects of the steroids lasted until about Wednesday. Thursday and Friday and the weekends were tough on that first week after treatment.
I'm not sure I could have done it without that flexibility, especially in the winter. I was so afraid of falling on the ice when my spinal mets were still active and painful.
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Well ladies, scan results were mixed. No organ involvement (yay!) but likely cysts on ovaries, so I'll be following up on that. Ct showed bones are stable, but bone scan showed increased uptake in femur. Oncologist and radiologist had a discussion and they decided the spots are probably not new, but could be worse than previous scan. Oncologist thinks it is just an affect of the scan and wants to rescan in 3 months instead of 6. If it is determined to be progression then it is probably back to the Taxotere (boo!). Onc stressed that he didn't think it was progression and felt we should stay the course for now. Not exactly the news this perfectionist wants, but overall ok I guess.
Hoping everyone is getting good results and is dealing well with SEs.
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Shutterbug - Thank you for the update. Good news that nothing is showing in your organs. Hoping the uptake in your femur is not progression. I'll be thinking of you. Please let us know the results of your scan in February. My scans are next month. URGH.
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It's funny, we want those scans, but then again, we don't. Every 3 months we hold our breaths
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This looks pretty exciting especially for us her2 gals who have higher chances of our cancer spreading to our brain. They even mention one of the next tests will be with herceptin for her2 breast cancer patients.
http://www.inquisitr.com/2552192/canadian-doctor-first-to-break-blood-brain-barrier/
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I too will be in H&P starting Nov 18th. I did one of the THP.....Taxotere has been rough....just one dose. I've done a lot of chemo...nothing like it! I love this site. I log in search my concern and get exactly what I need to keep going! Sisters in this journey.....I'm praying for some sweet peace for us all and bright sunshine for those of us who've had 9 days of rain...Georgia has been soaked. God bless! Thanks for sharing your lives!!
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Shutter, thanks for your post. We care- as our friend Barb (a beautiful angel) used to say. I was pleased to hear that your oncologist suspects that this is not progression - lots of times the oncologists instincts are right on the money, and I surely hope this is true for you.
And Mikarae, you and me, hon - my 6 months scans are due next month too (ugh) but I'm going to try to stretch it until after Christmas. Either way, we can weather them together. Onward! SUE
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Shutter, thank you for sharing your results. I'm curious, if you had you CT scan first and then your bone scan soon after then your MO is likely right! Try not to worry and believe that HP is working as it should!
I finished 5 rounds of HPT and plan to delay chemo exactly one week (4weeks between) to go to Punta Cana. I had this trip planned since Feb...MO says it is OK but who really knows. Just hoping those two 0.7 and 1.1 liver lesions are gone now or at least don't progress with a week delay. Next scans not until Jan after 8th cycle....Has anyone else had more than 3 weeks between treatments? MO said HP should be floating around still. Not sure I'm doing the right thing...I do have cancellation insurance but my husband and I are going with my brother and his wife who have never travelled anywhere..,they are pretty excited...I am hoping that all will be just fine!
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Hey Shutterbug - Congrats on the good news! Hope everything turns out to be OK.
Bstein - go ahead and take that trip. I took a four-week break between the end of THP and the beginning of HP to no ill effect. All life is short - don't miss out on the fabulous experiences!
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bstein, I have delayed chemo by one week twice while on HP, in order to take trips. Oncologist told me it would be fine and it was. In fact he said that they think it's impt to nurture the soul, and that they only tell folks NOT to take the trip if they are very ill. So go ahead and have a great trip. SUE
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WOW - should have thought that thru better. I have a caution to offer all of us on HP. I had a colonoscopy yesterday (all is well, another check in the OK box). As we all know, the prep is the miserable part, and we also know that diarrhea is a side effect of perjeta. Upon my husbands advice, I halved the dosage of the dulcolax and miralax that I was supposed to take the day before, and still became violently ill - nausea, vomiting, headache and of course, severe diarrhea. And I was still supposed to take more the next day before the procedure, which I did but greatly reduced amount. I am still emptying out like crazy. Clearly my current chemo regimen affected my prep. I don't know who I could have asked about it beforehand, but you bet I will talk to somebody before the next one. Ugh. SUE
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bstein-definitely take that trip! I delayed one of my THP rounds to go to a conference and it was fine. When you first start Stage 4 treatment you forget that this is going to be a marathon and you have to make time for quality of life. Have a great time!
Sue-that sounds miserable, I hope you're feeling better! I had one in September, the prep was definitely unpleasant, but nothing like that. Maybe you need some IV fluids to tank you back up? Take care
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Has anyone on H and P alone gotten severe constipation? I am on my 8th round of h and p after finishing chemo and it started out with diarrhea and has now morphed into really bad constipation for the last two months. I definitely prefer the diarrhea (for reasons I don't want to go into but would just like to know if I am alone in this. I have been gluten free for the last 4 months to reduce inflammation and I wonder if that could be causing the constipation. These cancer treatments are too much fun....
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