Recently began herceptin treatment for early stage CA

[Linda T]

I had my second herceptin treatment 2 days ago. I feel more fatigued than after first treatment and I am having periods of shortness of breath today. Has anyone else experienced these syptoms? When did they go away? How many treatments do the fatigue and achiness last?

[JAMIE]

I AM OFTEN TIRED AND EXTREMELY ACHY MOST OF THE TIME. I WASN'T SURE IF THIS WAS FROM THE USE OF HERCEPTIN, SINCE THE SIDE EFFECTS ARE SUPPOSEDLY MILD.

[Bonnie]

I will have my 9th dose of Herceptin on 9/22/06. I get one every three weeks.
I had a .9 Her2 breast cancer tumor removed last September. Followed by 4 sessions of AC chemotherapy, and then was told I need 4 sessions of Taxol. I had 7 weeks of radiation and started Herceptin. I was exhausted as expected during the chemotherapy and radiation. Now even though the worst is over I just feel like I've lost my mojo.
I go to the gym and once I get in the parking lot I realize I don't have the energy to work out.
I just read on this site that cancer can come back even after I complete my 17th dose of Herceptin which will be in February '07.
It could affect my central nervouse system, go to my brain or affect my heart. I get Muga scans every couple of months and my heart is very strong.
I am wondering if the continuing fatigue will end once I finish my Herceptin treatment. It was very scary to read the info from the Dana Farber site.
I thought I was going to be okay from now on since I went through all these treatments. Now I am very concerned.

[Jenene]

I, too, am experiencing overwhelming weariness. I can't seem to find the energy to jog, garden, or even do laundry. I also don't seem to care if the house falls down around my head.
I opted to have a mastectomy (big tumor - no lymph node involvement) and was able to skip the radiation treatments. I had 4 courses of chemo and am now on 8th Herceptin treatment (every 3 weeks).
My Muga scans are fine so far.
In the last 2 weeks I have had some improvement in my tiredness level. The only changes I made were adding a probiotic (for gut bacteria replacement), Fucoidan mushroom supplement (cancer defense being used in Japan), and 3mg Melatonin before going to bed.
I think I'm beginning to see a need to complement standard medical treatments (to remove the symptoms, ie tumors) with alternative medicine to correct the cause (bad diet, lack of sleep, high stress), and avoiding environmental problems, especially where soaps, shampoos, toothpastes and even household cleaning supplies and insecticides are concerned.
Is anyone out there having success in other approaches?

[Laurie]

I have been on Herceptin for almost a year. I induction chemo (because of the size of tumor) then surgery, then radiation. I started Herceptin just before my surgery with Taxol. I too was having shortness of breath and extreme fatigue. I now take weekly infusions and it is more manageble for me. I am having extreme fatigue. I do not know anyone else on Herceptin, so it is hard to tell if this is the drug, and the Doctors never seem sure because it is still considered a new drug. I only have 10 more weeks so hopefully when I stop I will be able to tell.
I have used complimentary medicine to help. I am also doing a detox diet right now. I discussed all this with my oncologist before I started. I find that it has been helpful physically and also it makes you feel a little more in control. I have been doing yoga for 10 years and it has helped me tremendously. Laughter is always good. Good luck to everyone. Let's find a cure! God bless.

[cocoa]

i had two lumpectomys..a mastectomy.. six rounds of chemo and am now on herceptin for the next six to eight months
Since my diagnosis last October..'05..i've drasticaly changed my diet... i eat vegetarian..only drink distilled water(nothing else) i eat mostly organic fruits and veggies.
i juice my own carrots and try to drink at least 12 ounces once a week. Exercise 2-4 times a week..
plenty of sunshine and fresh air
I use all natural toothpaste and deoderant
(no flouride or aluminum chlorhydrate)
I'm also focusing on de stressing my life and dealing honestly with my emotions..
But the most important thing .. i try to spend time
everyday in prayer and communion with God.
I trust him with my future..whatever it holds.

[cocoa]

addendum..
I've had several herceptin tratmentsd so far..
i feel fine.. no negative side effects.
During my chemo I was tired and very achy..but that was about it.
Since last year i've been taking a natural supplement called chlorella. It's a green super
food that comes in pill form) It helps build up my immune system and promotes gentle detox in the body. I think it was the best thing i could do for myself during chemo. and i plan to continue taking
it forever.
Everything I've read about chlorella makes me glad I started taking it a year ago.

[LindaW]

Linda T wrote:

I had my second herceptin treatment 2 days ago. I feel more fatigued than after first treatment and I am having periods of shortness of breath today. Has anyone else experienced these syptoms? When did they go away? How many treatments do the fatigue and achiness last?

I just finished 17 months of Herceptin, after 8 months of chemo and 9 weeks of radiation. The elation I felt after that last treatment on 1-26 has been followed by extreme fatigue and plain old listlessness. I actually felt pretty good during my treatments, and didn't notice too many side effects, except my vision has changed dramatically and I gained 20 pounds. I think my fatigue is due to the mental stress of being in cancer treatment for 2 and a half years, and the weirdness of it now being over. Cancer takes a lot out of you.

[LindaW]

I just finished 17 months of Herceptin, after 8 months of chemo and 9 weeks of radiation. The elation I felt after that last treatment on 1-26 has been followed by extreme fatigue and plain old listlessness. I actually felt pretty good during my treatments, and didn't notice too many side effects, except my vision has changed dramatically and I gained 20 pounds. I think my fatigue is due to the mental stress of being in cancer treatment for 2 and a half years, and the weirdness of it now being over. Cancer takes a lot out of you.

[berylf]

just had 11 dose of herceptin and just found out i have lymphoedema of my breast anyone else have this problem

[michelle]

my mom is going to start takin herceptin but she already has a weaker heart muscle so im worried about her heart with takin the herceptain with chemo..has anyone ever had any bad side affects from takin the herceptin???

[Jen - Melb Australia]

berylf wrote:

just had 11 dose of herceptin and just found out i have lymphoedema of my breast anyone else have this problem

My mum has lymphodema in the whole arm and hand on the affected side (she had her lymph nodes taken out), she has been lymphoedema free for a few years but since her relapse in Aug 06 she began Taxotere and Herceptin treatment which most likely triggered her lymphoedema. She sees a physio to get massages to drain the fluid and wears a compression sleeve during the day to reduce the swelling.

[Jennifer]

I am begining herceptin treatment after a double masectamy and 6 rounds of chemo. My tumor was in the lymphnodes but one out of 14 was affected. I am scared to death about the aches and tiredness.... I am a full time college student. I am 33 yrs old. How long does the side effects last?

[Jennifer]

I have been on Herceptin for 7 months now. I had two tumors in my breast one inside the other. One was 5.9 cm of DCIS and the center was 3 cm and agressive, 4 lymph nodes with cancer and then they found 2 that were 1 cm next to my heart. I had agressive AC chemo done every other week, major side effect to Taxol that put me in the hospital after 2 treatments. It was decided I was allergic to Taxol. I have had my 33 radiation treatments and now with the Taxol because of the problems I have developed have to have Herceptin weekly. They put me on Tamoxifen daily because I am estrogen, progestrogen & HER2 positive. Usually, I am full of energy and always wanting to do things and go places but I am to the point that I just want to sleep. All my blood work comes back normal, my heart is doing great and they actually say I am healthier than my doctors & nurses. They had me on steriods for the allergic reaction so I gained weight. I want to get rid of the weight but don't have the energy to do any excerise.

Any ideas on how to get rid of the fatigue???

[Joanne S Macomb MI]

Jennifer wrote:

I have been on Herceptin for 7 months now. I had two tumors in my breast one inside the other. One was 5.9 cm of DCIS and the center was 3 cm and agressive, 4 lymph nodes with cancer and then they found 2 that were 1 cm next to my heart. I had agressive AC chemo done every other week, major side effect to Taxol that put me in the hospital after 2 treatments. It was decided I was allergic to Taxol. I have had my 33 radiation treatments and now with the Taxol because of the problems I have developed have to have Herceptin weekly. They put me on Tamoxifen daily because I am estrogen, progestrogen & HER2 positive. Usually, I am full of energy and always wanting to do things and go places but I am to the point that I just want to sleep. All my blood work comes back normal, my heart is doing great and they actually say I am healthier than my doctors & nurses. They had me on steriods for the allergic reaction so I gained weight. I want to get rid of the weight but don't have the energy to do any excerise.
Any ideas on how to get rid of the fatigue???

Oh my goodness, you sound just like me. I was diagnosed with invasive ductal cancinoma last September. I am estrogen & progresterone positive and HER2 positive. I started chemo last September---I had 4 rounds of AC and 4 rounds of Taxol with Herceptin. I too have been on Herceptin since January and will continue getting it every three weeks through next January. I also take Tamoxifen. I had a double mastectomy with tissue expanders in February and 6 of 16 involved lymph nodes. I still have very little energy. Since I've been a couch potato for 10+ months I have gained quite a bit of weight. I am currently getting radiation. I force myself to go to physical therapy 2-3 times a week. When started PT three months ago, I was only able to tolerate the treadmill for two minutes. I am not up to 20 minutes. Fortunately, I have very gradually improved. Unfortunately, I still don't have enough energy to functon normally or perform my everyday chores/activities. email: [e-mail]

[k2shine]

berylf wrote:

just had 11 dose of herceptin and just found out i have lymphoedema of my breast anyone else have this problem

yes I have lymphedema of my right breast read about it on myspace.com/k2shine

if you want to chat aol k2shine im me.

[k2shine]

yes I have lymphedema of my right breast read about it on myspace.com/k2shine

if you want to chat aol k2shine im me

[Kim]

This is my third time battling cancer. Originally dx with Hodgskins Disease in 78 tx'd with 52 radiation treatments. In 96, dx with breast ca - mastectomy that resulted in lymphedema then in 2005 malignant pericardial and pleural effusions- started Tamoxifen. Did great for 2.5 years then massive pleural effusions returned. Now have permanent pleurx catheter and have been on Zoladex. Port placed and received first Herceptin tx and experienced back and ovary pain, chills and high temp. CT also showed mets to the liver. Plan is to continue indefinetly with the Herceptin every three weeks. I also struggle with fatigue. Any suggestions to combat this?

[saskia]

Hi k2shine...Lymphoedema can occur at any time after removal of lymph glands...there is a slightly increased risk of it after radiotherapy...there is no reason that I am aware of that Herceptin can cause it.

I have Her2+ive cancer...oestrogen and progesterone negative...primary not identified (even on MRI) but suspected from right breast and found 14 large positive lymph nodes when 28 were removed and one small met travelling upwards towards clavicle and have had eight sessions of three different types of chemotherapy inclusive of taxotere (a taxol) and 12 months of herceptin
completed about six weeks ago.
I have right breast lymphoedema that came on after radiotherapy...drainage of it with massage helps- must see an occupational therapist or physiotherapist trained as lymphoedema specialist in this area to gain advice.

I have continued working in my business throughout treatment although at times hard I just worked around the fatigue and nausea with chemo, joint pain with Taxotere etc but now try and de-stress by taking time out to pursue a hobby and relax a bit more but still continue to work.

I am a bit more tired lately and wondered if it was post the treatment as a whole and as always recommended walk regularly..which must do for at least 30 minutes daily..and exercise exercise...have to discipline myself to do just that!!!!less likely to have recurrence with good exercise and diet.....I hear.

[saskia]

michelle wrote:

my mom is going to start takin herceptin but she already has a weaker heart muscle so im worried about her heart with takin the herceptain with chemo..has anyone ever had any bad side affects from takin the herceptin???

Normally whilst on Herceptin you are monitored with heart scans as Herceptin can affect the heart but only a small percentage are affected and if it affects the heart you cease- and if there are any unusual symptoms you gain your oncologist's advice.
I have just finished my Herceptin and found the symptoms virtually nil with it...compared to chemo its a walk in the park..Good luck It seems to be a miracle drug for so many- there are long term survivors on it...and hopefully your Mum will be one of them