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NewSurvivor 10-07-2011 12:42 PM

TCH Revisited
 
Monday will be my 2nd round with TCH. Will this treatment be easier? I know it will not take as long this time, but wondered about all the side effects. This past week has been almost symptom free.
Also, has any one changed their minds mid-stream on the reconstruction. I have an expander in now, but am rethinking the implants. My PS said it would not look bad, since I'm small anyway, but there would be skin wrinkling. At this point, what's another wrinkle. The thought of going back into surgery is overwhelming at the moment.
Have a great weekend Everyone!

snolan 10-07-2011 01:55 PM

Re: TCH Revisited
 
TCH side effects overall are not as bad as some of the other treatments, but I felt different after each one. The last 2 gave me the most stomach issues, and fatigue seemed to take longer to get rid of. Never missed work because of it. Only had bone pain after the first two treatment once they gave me the shot. I still have to have reconstruction (have one expander in had to take the other out), you've been through the hardest part, the expander exchange is a lot easier but you have to feel it is right for you. There's no wrong descision.
Good luck on the rest of your treatments, just keep counting down they will pass before you know it.
Suzanne

NewSurvivor 10-28-2011 07:15 AM

Re: TCH Revisited
 
I've made it another week. Third treatment is on Halloween. This week the pain in my feet, hands and top of my head were worse than before. My brain has quit working but I think it is due to how tired and emotional I am and not the drugs.
I saw my onc last week and he mentioned that he would not have put me on neulasta due to my age (47?) and the fact I was already in menopause but decided to because my WBC was low to begin with. 3.2. The neulasta kicks it up but by next treatment counts are back down again. What does that mean? I will have to do more research.
I wanted to share an email my mom sent me during one of my crying days...

A rose for my very brave daughter - it is okay if you want to cry. "Don't ever discount the wonder of your tears. They can be healing waters and a stream of joy. Sometimes they are the best words the heart can speak."

Love you forever - Mama



It is only a tiny rosebud,
A flower of God's design;
But I cannot unfold the petals
With these clumsy hands of mine.


The secret of unfolding flowers
Is not known to such as I.
GOD opens this flower so sweetly,
When in my hands they fade and die.

If I cannot unfold a rosebud,
This flower of God's design,
Then how can I think I have wisdom
To unfold this life of mine?

So I'll trust in Him for His leading
Each moment of every day.
I will look to him for His guidance
Each step of the pilgrim way.

The pathway that lies before me,
Only my Heavenly Father knows.
I'll trust Him to unfold the moments,
Just as He unfolds the rose.




Kellennea 10-28-2011 09:42 AM

Re: TCH Revisited
 
Hi!

I had 6 rounds of TCH and for me the more cumulative they were the worse my SEs were. I had my treatments on thursdays, took off work on Fridays and was back to work on Mondays. By my 6th treatment I was in a lot of pain, physically. I also needed a transfusion after my 4th treatment, which sucked.

It does get better, I am a little over 7 months out and feel pretty good :)

I hope the rest of your treatments are just as easy for you as your first two!

snolan 10-28-2011 12:48 PM

Re: TCH Revisited
 
Your WBC can vary between treatments, they have a thresthold that if it goes too low they won't do your chemo treatment. You will probably keep getting the shots and just expect the up then down results. My levels varied between 2.2 and 2.4 so your 3.2 is not too bad yet. Low WBC just goes with the treatment, just need to watch that you are not around others that are sick, stay away from crouded venues. If you can make it through treatment without catching a cold it makes it easier. Hope things continue to go well.

NewSurvivor 10-28-2011 02:09 PM

Re: TCH Revisited
 
Thanks snolan. My count was low before I started treatment though, so something must have been going on beforehand.
How are you feeling since you've stopped herceptin?

BonnieR 10-28-2011 02:46 PM

Re: TCH Revisited
 
I found the side effects to be cumulative, I won't lie. My biggest issue at first was lack of appetite. Later I got very painful legs and joints. I remember writing in my journal "fatigue owns me". But we are all different and have varied reactions. I never was nauseous, for instance. I did need Neuelsta shots. My TCH was stopped after 4 due to encroaching neuropathy. Your journey will be different probably. Whatever happens, keep the faith.

chekmark 10-28-2011 03:13 PM

Re: TCH Revisited
 
I found that mind over matter played a huge roll for me. I like Kelly had mine on thursdays, worked on friday then it would hit me on Sat and Sun like a ton of bricks but I managed to go back to work on monday but still felt pretty crappy. I had my second chemo on Dec. 23rd and I told myself that it would not ruin my or my families christmas and I did pretty good. Then 3 and 4 were kinda rough again and then 5 and 6 I knew I was near the end and did pretty good. I had the shots as well. My count dropped tremendously and I had an allergic reaction to the antibiotic they put me on and ended up leaving my christmas party to go to the er. That was my only set back. Once that kink was worked out I had no other problems. The good news is that you have made it through 2 treatments. That is huge. Some have complications and set backs. You can do this. Before you know it you will be done with chemo and will start to get stronger every day.Stay strong. Cry all you want. I cried for 6 months, heck I still cry. I couldn't understand how this could have happened to me when NO ONE in my family had cancer. We are choosen for a reason and someday we will get the answer to that but until then we just keep the faith as Bonnie has told us all and hope for the best. They are getting this breast cancer beast figured out. The chemicals they put in our bodies make us feel worse than the cancer, and then you start to look like a cancer patient and that does not help but then it is over and you start to look like your old self again except now there is no cancer. (Hopefully) And we continue to live our lives differently. The journey is rough but we are strong and we are fighters. Keep your chin up. We are all here cheering for you. I cried today when I was telling someone that asked about my journey and while I was telling this story I thought, wow I have been through alot and I am here to tell my story. I had never really had that feeling before. I was glad to be alive. I lost a year with treatment but I will have hopefully gained another 20 or 30. That makes it all worth it for me. Would I do it again, don't know. I will tackle that hurdle IF it happens but I told myself that it is not going to happen. Take care of yourself and your needs. You deserve it! God bless and keep us posted. Darlene

chrisy 10-28-2011 05:14 PM

Re: TCH Revisited
 
A comment on the implant surgery - for me it was WAY easier than the mastectomy. I was up and running around within a few days and back to work full time after 2 weeks. So although surgery is definitely not fun...it is doable.

Hang in there on the TCH, I also remember the effects, particularly fatigue, being cumulative but overall I thought I was doing pretty good (then when it was over and I was on Herceptin alone, I REALLY felt good and realized how dopey I had been towards the end of the chemo piece!)

But remember, as chekmark said, you are investing a year of your life in treatment...to get the rest of the years you deserve.

chemteach 11-03-2011 07:35 PM

Re: TCH Revisited
 
I really appreciate all of your positive comments and words of encouragement. I am home today from the teaching job that I love because of the TCH I had a few days ago. It weakens me and makes me feel so bad, and I owe my students way more than this. High school kids are fantastic and have been on this journey since I came back to school in August after my mastectomy. They've watched my hair fall out and have asked questions and have given me gifts and cards and hugs. The football team made me an honorary captain last week at the game. I don't know how I would ever get through my work without these kids. We all must have something to keep us moving forward. I want to be well and feel like myself again. I'm always optimistic, but I guess it's just a tough day today. Even water tastes bad today. Surely I can get through one more treatment and a year of Herceptin, and I hope this will all be a thing of the past. As I read your posts, you are the heroes, not I, because many of you have much more difficult circumstances. You all encourage me, and I am thankful!

Pray 11-03-2011 07:48 PM

Re: TCH Revisited
 
The tough part for you is almost over. Your doing great! You are obviously a very well loved women and very very blessed. Gods blessings to you, your family and all of those wonderful students. Please know you are in my prayers.

Your Friend,

Nancy

BonnieR 11-03-2011 08:11 PM

Re: TCH Revisited
 
Chemteach, you are giving your students more than you imagine. It sounds like all of you have been on a real journey together. And that is something they will always remember. And be better people for having done so. Your being out sick a day or two is also a lesson in real life. You have been an example of strength and also let them know we are all vulnerable too, sometimes.
I was very moved by your story of their thoughtfulness and kindness.
As has been said before, you are in the home stretch now! The worst is in the rear view mirror! You will find Herceptin much more tolerable
Keep the faith.

NewSurvivor 11-05-2011 01:23 PM

Re: TCH Revisited
 
NewSurvivor here. I'm at work for the first time in a week. The office had the carpets cleaned so I'm high on fumes at the moment. Thank God it smells better than the chemo.
I read some replies to my posts and realize that I have "selective" reading. Cumulative is a word I skipped right over. Now I know. Number 4 will be worse and I am ready because it is also the LAST ONE. Then I can stop being the cry baby and move on. I feel better today than I have all week though and am thankful for that.
I read a book over the week that was pretty good and lifted my spirits slightly. In case any one is interested. Here is the link:
http://www.lumptolaughter.org/grace_book.htm
Once I get through this struggle in my life, my promise is to be the upbeat and happy person that I have always been until now. I don't like who I am now and how my mind plays tricks on my emotions. I want to be able to help people through this time in their lives, not just the breast cancer, but the treatment! There must be a better way to prepare people and make them more comfortable in this area. Okay - fumes must be taking over so I'm signing off...
Love you guys.

BonnieR 11-05-2011 01:43 PM

Re: TCH Revisited
 
New Survivor, first of all, you are NOT being a cry baby. Don't ever feel that way. We have earned every tear we shed! This is a time of high (and low!) emotions coupled with hormonal upheaval. It is good that you recognize it is only temporary. But just be easy on yourself.

In terms of preparing people, my cancer center has a voluntary Navigator Program which matches survivors with new patients. We help them navigate the journey through treatment. I find it very rewarding.
There are often support groups offered too. Maybe you have one in your area.
Keep the faith.

chemteach 11-05-2011 04:27 PM

Re: TCH Revisited
 
Thank you for the kind comments BonnieR. I keep working on being upbeat and positive even with the indescribable taste of chemo in my mouth. It will be gone by Monday I hope, and like New Survivor, I look forward to that last treatment and moving onward. At the same time that I am emotional and grumpy and weak, I am so thankful that I am not sick to my stomach as others have been. I am thankful for those who were in Herceptin trials before me, and I get the benefits of all that research and trial activity. Somehow we will give back, maybe through helping newly diagnosed people we know or participating in a trial or becoming a survivor. Someone told me there is a gift at the end of this journey. I'm not sure what it is yet, but I think it's true. Thank you for the prayers. I appreciate each of you.

alicem 11-05-2011 07:59 PM

Re: TCH Revisited
 
Chemteach,

It has been 2 1/2 years since my last "TC"H infusion, and there is much that is a distant memory. The memory that I remember most is that horrid taste in my mouth. Maybe you are doing this already, but just in case you aren't, I found that if I rinsed my mouth with a solution of salt and baking soda, it seemed to help. I would mix 1 tsp. of each into a pint of water. I kept one container by the kitchen sink and one by my bathroom sink. Whenever that yucky taste came along, I would swish and gargle a few times and it would go away - for awhile. Halfway through my chemo I would do it a few times a day. By the last treatment I would have to do it once an hour. It helped me, hopefully it will help you!

Alice

Jean 11-06-2011 05:54 PM

Re: TCH Revisited
 
New Survivor: How beautiful your Mother's words are. We have all cried at one time or another during our journey..I remember when first dx I could not or would not cry as I had to be brave for my husband and son who when they heard the news turned pale. I saw the fear in their eyes for me. After my surgery and finding out I was Her2 I had a good hard cry. Felt good! At that time early stage patients were no t being treated with Herceptin. It only added to the frustration of the dx. to learn that one had to fight for the best treatment.

THC is pretty much the Gold Standard of treatment now. The herceptin part of your treatment will so much easier. Each one is different but for the most part one can expect the fatigue. It is important to eat a good source of high protein. Keep your flushing your system with water after treatment. Try to eat yogurt to keep your system in check (I never had a problem with thrush.
I also would have treatment on Thur. I woiuld be fine on Fri. - Sat. Sun were down days but try to walk even if it is just to your own mailbox. I also found that warm soaking baths were helpful for the joints and aches. I would even
put a heating pad on legs to relieve the muscle aches.

What is most important is - here I am 6.5 yrs. later and I look back on treatment and am thankful. You will too! Before you know it you will be posting your one out from treatment and looking back saying wow I really did it. Just keep looking ahead and know that you are doing all you can and you will make it through treatment.

Wishing you all the best.
Jean

lizely 11-14-2011 11:21 PM

Re: TCH Revisited
 
Hi -

I have been a lurker here, reading everyone's posts and learning a lot but not contributing. Here's my experience:

I had a very easy time with my 4 TCH treatments and the remaining herceptin alone treatments which I'm now halfway through. No nausea, no fatigue, no food tasting bad, no achy bones or joints. Just hair loss and a tiny bit of neuropathy. I recognize that many have a harder time than I have had, but I think it's important for newcomers to know that the treatments can be easy, certainly doable.

I chose not to have a pot and am glad I haven't had one. No problems finding veins.

Mastectomy and reconstruction were also easy. Pain was a lot less than the 3 c-sections I had and recuperation very quick.

A positive attitude throughout is probably the most important of all.

chemteach 11-17-2011 10:02 PM

Re: TCH Revisited
 
Alice, thank you for the tip about the baking soda and salt water rinse. That's been helpful! I have my final round of 4 chemo treatments on Monday just in time for Thanksgiving. At least I won't have to miss as much school this time!
Lively, I am on the same treatment regimen as you and will be on Herceptin for a year. I hope that will be the last of this. It has been do-able, not pleasant, but necessary. Like you, I know there are many who have had way worse experiences in all this, so I am thankful for all I've gone through. A positive attitude is essential! People comment about that all the time, and it makes my attitude even more positive. My students inspire me, and I inspire them! This will be a school year of many special memories.
I have gained about 10 pounds which irritates me very much. They say it's because of the dexamethazone. I'm anxious to get back into anexercise routine after this treatment is behind me, and I won't be as fatigued. Have any of you had concerns or problems getting into exercise, like P90X or Insanity, after mastectomy? I'm thinking of starting around Christmas break.
You all are terrific, and your responses throughout the website as so helpful. Thank you

alicem 11-18-2011 01:55 PM

Re: TCH Revisited
 
Glad the salt & soda rinse has helped.

I also gained weight during chemo and couldn't wait to get back to exercising. I had been able to do a little bit through treatment, but towards the end was just too tired. My favorite workout is biking, and there was a charity bike ride supporting breast cancer patients 5 months after my last treatment. I was able to bike during the summer and rode my first 100 mile ride in October. Just listen to your body and try not to do too much at the beginning. Congratulations on the end of your treatments!!


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