Struggling with final Herceptin tx

jackboo09

Hi everyone

For those of you who have completed a year of Herceptin: I have 2 left and was wondering if any of you could relate to the following:

Fatigue- cannot go to bed later than 9pm and tiredness seems to have increased as the year's gone on.

Mild body aches. Could be due to a virus but also herceptin?

"Had enough syndrome"- just want treatment to finish and also, am I likely to feel better when the drug is a few weeks out of my system?

Liz

SpecialK

jackboo - I finished Herceptin in January.  I did have fatigue but it did not dictate a bedtime.  I had the opposite problem, fatigue and insomnia combined.  I definitely did have body aches, more than just mild.  I can tell you that my onc's P.A. was not offhand about the link between Herceptin and this kind of aching, although she said it does not happen often.  The good news - it did dissipate but took about 6 weeks.  You will feel better, more energy, less aching, and relief that you are done with this chapter.  Good luck!

Jaytee

Hi Jackboo---------only 2 left, you are almost there!!  I finished my herceptin in Dec last year.  When my onc gave me my treatment plan that was the most daunting part of it, thinking about a whole year.  I had A/C chemo first and the herceptin was supposed to start when my 12 weeks of taxol started.  I had to delay that because my muga scans showed that the A/C had caused my EF to drop.  Didnt start the herceptin until week 8 of taxol----that made it seem even longer.   How have your muga scans gone?  Mine did drop some more as I went along, but I did get through all my treatments.   That may be part of the reason for your fatigue.  I have definitely been feeling better since my treatment ended.  I started walking in Feb and have worked myself up to 2-3 miles a day.  I have a goal to hopefully get off of some medication I was prescribed to help my heart function.   I ended up having to see a cardiologist during treatment,  I wasnt very happy about that---just another stop on this medical merry-go-round I have found myself on since my dx.

I have body aches, but mine are mostly from the AI I started taking in the summer.  I take the generic form of femara.  The walking seems to help me deal with those side effects also.  They don't go away but for the hour or so that I am out walking, I just feel better and I can feel myself getting stronger. 

Congratulations on being almost done--------hope you will be feeling better soon!     judy

Twinmom77

I had the same thing, along with headaches for about the last 3 tx's.  Onc always said that is wasn't the Herceptin because it has no side effects but I know that's what it was. Like SpecialK said, it does take some time...more like 2 months before I started feeling more normal again. That may seem like a long time, but you'll be surprised how just finishing that last tx makes you feel worlds better and you'll be so happy to be done you won't mind the fatigue as much.  Good luck and hang in there....You're almost there!!!

CarylC

I had my 2nd to the last Herceptin today.  I had starting getting exhausted a couple of months ago, sleeping 12 hours a day, my onc tested my thyroid and turns out I have some thyroid issues going on now that I didn't have before.  Radiation caused perhaps?  No one is saying.  Plus a horrible Vit D deficiency.  Prescription Vit D is starting to help me get some of the energy back along with sublingual Vitamin B. 

I hope to feel normal again someday!  Congrats on being almost done.

sewingnut

I also had the body aches. Mostly hips and ankles. I was getting really concerned about it but went to the Herceptin website and they state that muscle/bone pain is a side effect. Onc also confirmed it. So I wasnt losing my mind.  Only 2 more for you. It will pass quickly and then you will wonder what to do with your time.....

jackboo09

Hi everyone

Thank you for your posts. You have given me much needed strength and I know that aches and fatigue are common.

I think I have possibly been doing too much. I am a teacher, but am currently doing home tuition. However, my son has also needed a lot of help as he goes up to High School in Sept.

Jaytee: my mugas have always been around 50. One did drop to 47 so I was put on Ramipril 2.5mg to help my heart. Confusingly the last muga showed 36 and I was promptly put in a wheelchair and given an echo. This showed 65!!! Am taking the latter result. Perhaps the Ramipril has a bearing on my energy levels.

Bless you all for motivating me. The end is in sight (hopefully) and I can look forward to the Summer and all that brings.

Liz

jackboo09

Hi again

Interested to know if anyone had to or chose to skip treatments 17 & 18 of herceptin.

Liz

Trisha-Anne

Liz I finished my last Herceptin in January.  To start with it was so easy - especially compared to chemo.  I found the last 3 or 4 treatments were the hardest.  I was tired and headachy and also had mild diahorrea the next day.

I also had a lot of aches and pains, but a lot of that is the Arimidex.  They have lessened somewhat since finishing Herceptin.

I actually found the last treatment (no 18) very easy as it was only half a dose, apparently they work out how much you need over 12 months and usually the last dose is very low.

Hope this helps - you really are so close to the end, try to hang in there. 

Trish

xoxo

jackboo09

Hello Trisha-anne

Thank you for your encouragement. I have tx 17 this Fri. Have to go for an ecg first as I have been experiencing heart palps and on occasion shortness of breath. Ive had loads of ecg heart monitoring and every time it has been normal. My last echo was 65, yet I am periodically symptomatic. I think its these issues that are making the last Herceptins hard for me. Im at the end but I cant seem to rejoice-strange. Will try and shake myself out of it. First haircut tomorrow-whoopee!!!!!

Best wishes to you

Liz

Rubyluby

Hi Liz,

I opted not to have Herceptin no 18 because of increasing dizziness as a side effect, which got worse with each infusion. By the end I just couldnt stand it anymore. The episodes of dizziness made me feel like I had just stepped off a roundabout and I couldnt keep my balance. This is listed as a not very common side effect of H, but my onc did recognise it and she was quite okay with my decision (also given that I had three month of Tykerb/Lapatinib treatment prior to the Herceptin). The Herceptin also gave me quite severe oedoema (swelling) in my ankles (though that got better over the course), slowed my hair growth and seemed to make it impossible for me to lose weight.

Im glad to say that the dizziness got better within a few weeks of my final Herceptin infusion (on 20 January 2011), but it took another 10 months before I could start losing the weight I gained during chemo (37 pounds). 

Hang in there Liz, you are almost done and you will feel like a whole new person very soon! : )

Lucy