TCh vs. ACTh
Comments
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bjn850--thanks for filling me in. Wow, you had it in the midst of chemo? I didn't know they would do that. I think the team approach is good. My breast surgeon has never even called me to schedule a follow-up and I must say this concerns me. Do you guys think I should call him or just let it go and focus on getting my rad therapy lined up? Just seems like he might want to know how I'm doing... I will make some calls this week to investigate and find out what information the rad folks need for my consultation appointment. Yes, a team approach would be nice...
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Erica -- When did you last see your surgeon? After doing two post-op visits to make sure everything was okay, I'm not scheduled to see mine until three months after the last visit. That appointment is coming up just after I finish chemo. Mine said she would follow me every three months while I was getting treatment and then, if everything still looks good, it would switch to every six months. It wouldn't hurt to call the office and see what the normal follow-up schedule is for your surgeon.
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My first treatment was a bit discouraging as I was nauseated for 5-7 days after treatment even with Emend and compazine. And I couldn't stay awake! I felt I lost the whole week.
However...I recovered so much the next week, and by the 14th day after tx. I felt awesome.
I go back on day 21 for my 2nd treatment (in 2 days) and am trying decadron for nausea this time? But I guess I will still sleep it off regardless.
My hair started coming out in huge clumps on day 15 during showering and by day 16 I couldn't keep up with it so I removed it all by shaving. Wow - shocker!
I made myself go buy a wig to keep my self esteem up when I want to go out and feel special. I never thought I would find one that made me feel like me, but I actually did. I actually feel special and beautiful when I wear it, now if I can only get used to having something foreign on my head.
As a single mom I was very concerned about my teens seeing me go through this, but they have been great. They got to see me very sick after chemo - but then we had so much fun during my healthy days by spending quality time together that they see some light inbetween the darkness. Now my next treatment they will know when I am so sick - that I WILL get better!
If anyone new reads this post do your self a favor....Take ONE treatment at a time! I went into my treatment thinking about the entire PLAN of treatment mapped out for me over an almost 2 year course. Bad idea! When I got sick after treatment I kept telling myself "I can't do this for over a year" "I am NOT going back" "I will not be sick this whole time"...
When I FINALLY readjusted my way of thinking to "Just get through one treatment at a time" I was ok. I could only say "Just get me through today" I found viewing my treatments in small bites seemed FAR less intimidating than looking down the road. The anxiety went away when I did that. And I started enjoying my healthy days like NEVER before.
I will worry about the next treatment - when I get there. Taking one day at a time and REALLY enjoying the GOOD days makes my life seem more important.
I am sure this will seem different when I do treatments once a week in lieu of my once every 3 weeks, but I will cross that bridge when I get there.
I felt so good this past week (days 14 - 20) that my 14 yo and 2 of his buddies and I went camping in a tent for 2 nights at a campground at Lion Country Safari. (West Palm Florida) How much fun I had!!!! It was a terrific week!
I have stopped fearing the side effects of Adrimycin and am only looking for positive things.
Last night I had a tough night feeling alone and cried for the first time in 2 months - but today is a new and better day.
In addition to the topic at hand TCH vs ACTH I strongly feel trusting your oncologist is important as well as your self. I ended up having a second opinion concerning the TCH vs. ACTH from a well respected oncologist from a different state. She never hesitated to recommend the ACTH treatment for my case. In addition, the cancer center I go to is affiliated with H. Lee Moffitt Cancer Center and the oncology team from my center uses a County wide Team approach with all new patients. EVery Friday the team of oncologists meet to discuss all brand new tumor patients and their plan of treatment in case of any 2nd guessing or input needed for treatment as every case is different and does NOT fall in the Black and White category.
All in all I have to feel confident in my plan and I do now. WHat I wasn't confident in was HOW I would handle the treatment. And THAT IS different for us all.
Have a positive day!
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Wow, second day of chemo #3 and I ever tired. The good news was that yesterday I got my red counts back up so avoided a procrit shot. Nurse said would probably be back down next week. We'll see. Cathy does excercise help you red blood counts? I excercized a lot last week plus took iron supps.
thanks for being here!
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Hi Erica -- yes, exercise can help with red blood counts. Although, the studies I've seen were specific to radiation rather than chemo. Mine yesterday were still good and I only have one more round to go.
I've had a Neulasta shot each time for white blood counts, but have not needed the procrit. -
did you have the TOPO test?
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No, I didn't. In my case, I decided my family history of heart problems was enough to have me decide against adriamycin whether or not I was topo+.
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Cathy, you go girl. Making it through all 6 treatments without a procrit shot is quite an accomplishment indeed! I am having a rough first 5 days after #3. Hope to get back to my excercise as soon as possible. I even had my first ever bout of nausea this week. Not fun...
Thanks for being here... -
Thanks, Ercia. My dh and I have a vacation planned the end of next week and then I have my last round the week after we get back. I'm sure this round has seemed so easy, because I keep thinking only x # of days until my last round. Now that I'm almost done, it's easier to ignore the minor side effects. And, you're now half way done!
Sorry to hear you are having nausea. Try to eat small, frequent meals that are high in protein. I find no salt trail mix is a really good snack for me. The nuts and raisins seem to do the trick. They have it at Trader Joe's if you have one nearby. If not, I suspect almost any health food store would have it. Of course, that may sound awful to you. It's been funny to me how something that tastes good one round, sounds disgusting the next one.
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I finished TCH just last month and I agree one tx at a time and always count up not down. As in half done, 2/3 done etc. I had my herceptin only drip yesterday and it gave me this wierd full feeling and I was tired. Today fine... so nice not to worry about se anymore. Ladies the time will fly. It did for me... and I know it will for you all.
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Congratulations Kimbly, you crossed the finish line. No small accomplishment.
Best wishes for no recurrence from now on! Enjoy life with no SE's!
Erica2 -
Well, I'm finally done! Had last TCH treatment last week (April 24) ... it is much easier to endure the se's this week since I know it is the last time. Hope all of you are doing fine. We haven't posted much here lately so I wanted to check in and see how everyone is doing.
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Congratulations, MaryAnn! I have my last round on Tuesday and this is the first one I'm really looking forward to. I can hardly wait for this to be over and start putting some of this behind me. My dh and I are in the South on vacation this week and there are very few of my favorites that I'm eating, because what's the point when they don't taste right. I keep thinking in about six weeks (from what I've been told by others) the taste buds should start being a lot better. Not sure how long it takes before the nails and finger bruising get better because that could be from either Taxotere or Herceptin or the combination. We'll have to start comparing notes on when SEs disappear.
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MaryAnn and Cathy,
I am so happy for you both! I hope the SE's are gone soon for both of you. I ordered a book from Johns Hopkins Press about getting your health back after cancer treatment. I will give you more specifics when I get it. You all might want to order a copy if it looks good.
Celebrate, you've certainly earned it!
Erica -
Tomorrow is my #4 treatment. I took my two Decadron pills this am. Am feeling very headachy with noticeable dark circles around my eyes. Any of you have these circles? Will they eventually go away? Anything I can do now other than makeup???
Thanks for being here. Not looking forward to tomorrow. -
Hi Erica ... You sound a bit worn out by all this ... it's no wonder, huh? But just hang in there because you can do it and you will be done very soon. I think the time around treatment 4 is hard because it's kind of right in the middle and you are starting to feel the cumulative effects. But once #4 is over, you only have 2 left. And #6 is actually something you look forward to in a weird way ... because it's the end! I didn't have the dark circles so not sure about that. Keep your chin up!
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MaryAnn, I got my first procrit shot today. Despite my taking iron supps and exercising like mad I just didn't not get the bounce back today that I did last time. So I decided to get one expecting my Week #2 to bring down my RBC's even lower.
It's always something...and you are right I am seeing the cummulative effects and so are my red blood counts.
4 down and 2 more to go!
Erica, thanks for being here... -
Erica -- I do think #4 is hard for some reason. You don't bounce back and some of the SEs that had been going away between rounds don't (at least for me). Round 4 was when the nail bruising started and the bad taste in my mouth stayed. I think there's also a psychological aspect of having to go through it two more times. Believe me, once you do #5, you will be looking forward to #6! I have the last round this afternoon and am going to be practically skipping into the place. Like MaryAnn said in her earlier post, everything is easier when you know it's the last one.
Hang in there, you are doing great!
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Cathy - by the time you read this, you'll be done!!! It's a great feeling, isn't it?
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Thanks, MaryAnn -- yes, it's a wonderful feeling. I asked the onc today what I should expect when I'm just on Herceptin and her response was "you'll feel normal". Based on how few side effects I've had from the chemo with Herceptin mixed in, she thinks I won't notice anything while on Herceptin. Ah, "normal" what a wonderful thing to look forward to. She did say that it takes about two months for the taste buds to fully recover and hair to start growing in.
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Erica ... just wondering how you are doing? I want you to know that you can look forward to feeling much, much better soon. I am not quite three weeks past my last chemo and I feel better and better every day. You will be where I am very soon!
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Cathy ... have you started your rads yet? I went today for my CT and simulation, will do a dry run next Monday, and start rads on Tuesday. I feel so much better already and am not quite three weeks out from my last chemo. Hope you are feeling great also!
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Hi, MaryAnn--thanks for asking. Unfortunately I waited too long for my first procrit shot and on Monday when I went in for my Herceptin they told me after that I needed to go to the hospital for a blood transfusion. I stayed overnite and they gave me 3 units. Today I am still trying to recover...they gave me another procrit plus herceptin and Monday then sent me for the transfusion.
Glad you ladies are doing so well. I guess everything just caught up with me. Hope I can get through these next 2.
Erica -
Hi Erica ... sorry to hear about your trip to the hospital. I hope you feel better soon. It's hard to have to deal with complications on top of the chemo but I'm sure you will get through this. For some reason, today I am completely exhausted ... no real explanation for it. Take care and let us know how you are doing.
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Erica -- I'm so sorry you had to be hospitalized. I'm sure they will watch you very closely for your final two.
MaryAnn -- I went for my dry run and final markings today and start on Monday. The rad onc didn't want to start me quite so soon, but I did a bit of begging. He prefers to wait at least three weeks after chemo, but I brought all my blood tests and showed him that I have been great throughout, so letting me start two weeks out wouldn't be a problem. I'm trying to get it all done before my youngest goes to college orientation in July. They do a parent orientation as part of it, so want to be there. The rad onc did say if I'm not done, he doesn't mind my missing two days and picking up when I get back. His feeling is enough people have to take a rad vacation due to skin issues that it won't be a big deal.
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Hi everyone! Had my second TCH May 14th. Doing okay. My daughter has been with me for over a month,and it has been great. She's going back home next wednesday.She lives half way across the world. But I am very happy for her, as she was diagnosed with an autoimmune desease at 22, and for the last 4 years has been doing great.Last night she went to visit her father, and so I am alone today. When I am alone I seem to consentrate more on the bc.I guess I'm feeling a bit down today. I like to exercise. Before the diag. I was walking at least 8 miles 4 days weekly. After my 1st chemo, I did do 2 miles 3 x week. I just feel like if I don't move around,it does something to my spirit. Anyways, today I did a walking video for just 1 mile, stopped did something else, then went back and did another mile. Its been raining and I don't know why, but just didn't want to go out-even though I had many things to do-post office, library etc. Well I really like photography, and love Flicka.com. I find looking at photos very distracting, also I am an artist and when I see something I like - I draw it. Also I had a bad experience about a week before my surgery-was walking by the terrible crane accident in NYc when it happened. I felt the ground shake and saw and heard the crane falling, and saw the building explode. Its been more than a month, and I have gotten over it somewhat. But I still have flashbacks, and I guess I am not readily able to run about manhattan like I used to. Oh, does anyone know how the hercepton is usually given after chemo? Is it ev 3 wks or ev/ wk? Sorry for posting such a long depressing script. Something good that happened to me - was I went away to the mts for a good dose of trees and nature last weekend-it was like heaven.
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Hi Cathy, We will be starting rads within a day of each other. I do the dry run on Monday and start Tuesday. I will have an hour drive each way so I am not looking forward to that! But I wanted to keep my treatment all at the same medical center, so that's the way it is! I had a mammogram yesterday which they said was fine so I am happy and relieved about that. Take care and let us know how the rads are progrssing.
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Hi tomatojuice ... once chemo was finished, my onc switched me to the three week herceptin. I think that is common practice. Seems to be fine ... no noticeable problems although I am very tired lately but I think it is the cumulative result of the chemo. I'm glad to hear you exercise ... that is something that has always been a struggle for me but I know it's important. I hope you are feeling upbeat and enjoy the rest of your time with your daughter! Take care!
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Hello everyone, I came upon this checking out the research for TCH. I am at home recovering from bilat. mast last wed 5-14-08. Chemo to start 5-28-08 all the information on what to take to prevent side effects has been great information.
I go for a med. port after my chest wall heals from all the surgery. I can't imagine any more chest discomfort right now.
Thanks for all the great information
Luann
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Hi Tomatojuice, I think they have me on every week with Herceptin even after chemo is finished. But my doctor is only going out 26 weeks total of Herceptin. He thinks one year is not needed. I am starting round #5 of TCH on Monday. My counts are very good now as I had a blood transfusion on Monday. That shook me up a bit but was amazed today how great my counts are. They are even higher now than when I started this whole thing so I'm hoping it will last me until the last one and hopefully no more procrit shots (I've had 2 so far)...
MaryAnn, do they do a mammaogram before starting rads? I still have a consultation for my rad. onc. Guess I willl learn more then. Congrats on the good mammogram.
A bit shook up but still here.
E
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