Life AFTER Herceptin

[RhondaH]

8/10/06 will be my last Herceptin (or at least that is the "plan") and I have a question for all of you that TOOK Herceptin (preferably for a year) and are no longer on it. Lani has asked the question of side effects while ON Herceptin, but I want to know about AFTER. What physical conditions got better (remain the same or worse) after Herceptin and about how long after Herceptin did you notice these things? I understand some side effects may be due to chemo, but what do I have to look forward to after Herceptin is done? Thank you.

Rhonda

[Susan Rankin]

I also will be finishing my weekly Herceptin on June 20. I have been on it for one year. I was diagnosed in July 2004 Her2+++, sentinel node positive, Er/PR+. I hade dose dense chemo, Adriamycin x 4, Taxol x 4, and Cytoxan x 4 and then 33 radiations. I also take Arimidex.

Herceptin has been my security blanket and I will be scared to death when I come off of it but I hope I will have more energy, less joint pain, stronger fingernails. Some of these side effects are probably coming from the Arimidex. I took Femara for a month and the joint pain was much worse so I went back to the Arimidex.

I enjoy this support group so much. It has been a great help to come and read all the threads. I don't post often but I do enjoy reading.

Susan

[Berta]

Rhonda: I can't be of much help. I have my last Herceptin treatment on July 14th and I also am hoping to have more energy, be able to lose weight more easily. I did have a few months between chemo and herceptin and I lost all my chemo weight (I have since gained it back). I felt like I had lots of energy then, walking 3 miles in the morning and biking in the evening. Now I do good to walk 1 1/2 miles in the morning and am very tired when I get home from work. I too would like to hear about "Life after Herceptin" BERTA

[Tami]

My last herceptin treatment was 8/05 after 1 year every 3 weeks. I really did not have any side effects from herceptin with the exception of runny nose the day of infusion. One big bonus is that I was able to get my mediport removed. I waited to do this after I had full body bone scan, CT/Pet scan and brain MRI. All negative.

I thought I would be afraid to fly without my herceptin net but at age 45 I just didn't want to keep taxing my heart even if the effects were reversible. My energy level is back, I feel great, think about cancer less and am training to do the Danskin Triathlon - did I mention I hate to run and am not that good of swimmer???? Well a friend has done it the last 2 years and asked me to join her in Seattle in August and do it with her. It has been a motivating force to get me active - hopefully it won't kill me!

I think the biggest change has been mental. I finally feel that I am through this -- no more muga's and radioactive isotopes, no more visits to the chemo room every three weeks, no more port bumping out of my chest. It is a welcomed break. I still have thoughts and concerns of recurrance but I am cancer and chemically free at the moment and I am enjoying that and living that. Doing what I can through diet, exercise and laughter.

Life is good.
Tami

[michele u]

Rhonda, I know what you mean about your safety net. I've been off herceptin for a year now. I'm scared all the time being on no medication to stop recurrence. the side effects of chemo going away are different for everyone. I think I felt like "myself" about 6 months after chemo and Herceptin. when my hair grew back and i gained some energy and I could sleep alot, I truly look and feel better then before cancer. Everyone seems to tell me that, ALL THE TIME. At first i was very anoyed by it, now i take it as a compliment.

[Olivia]

Rhonda,

I finished my last Herceptin on May 17th. So almost 3 weeks ago. I was nervous and excited. Feel like I am hanging out there now. ER- so I figure all I have is exercise and a healthy diet as drugs.

I have noticed my nose has stopped running..... still have insomnia.... and am hoping it was the Herceptin that caused weight gain and NOT a screwed up metabolism from chemo.

I exercise 5-6x a week and have been TRYING to eat healthy and NOTHING!!

ANyway, there is life out there after. I thought I would be more of a basket case but I am ok.

Take care,

Olivia

[cadams]

Hi Rhonda,

I was in the two year arm of the HERA trial and had my final treatment on April 6th. The most exciting part of finishing was having my port removed on April 11th. I am now shamelessly wearing low cut tank tops, scars & all! In terms of diminishing side effects, the biggest difference has been that I am SLEEPING. Insomnia was a real problem for me, especially in the second year. I still don't have 100% energy but I do think it is slowly improving. My constantly dripping nose has also decreased substantially and I will say with cautious optimism that my fingernails are improving.

Congratulations to all on your final treatments! It is quite a change not having to go to the 'chemo joint' every 3 weeks.

Christine Adams (Vancouver, B.C.)

[MCS]

Rhonda,


That is just a great question. We are so worried that once we are off, this will come back, sice like others here, I also feel it's a security balnket. I wish I could take it every three months or something like that as a vaccine.

And once i'm closer to the end I will have the same concerns.

But I am just so happy for you that you can see this at the end of the tunnel. Maybe you will be the guiding light to give us more information. I always read your comments on diet too.

Lots of love

MCS ( maria)

[janet/FL]

Hi Ronda
Good question. My last treatment is next month. I too wonder what changes theere will be. I was diagnosed 11-2004 with lumpectomy 12-2004. 9 mm tumor, no nodes positive. ER/PR negative, Her2, FISH postive. Turned down the recommended A/C. Had 35 rounds of rads and finished those in March of 2005. Changed oncolologtists and began Taxotere/Herceptin in August 2005. Now on every three week plan.
Very much looking forward to being off Herceptin and having my port out. As stage one. my doctor does not recommend any particular follow up other than seeing him every three or four months to see if I have any new complaints. He feels there is no difference in survival rate for those that are caught with mets before or after symptoms. I don't have the energy to fight him over it right now. I just want all of this OVER! I will have a mammo and bilateral breast MRI in December, but that is because my breast surgeon is recommending it.
I hope to lose the weight I am just now piling on. Four pounds in the last three weeks! And be able to sleep again. Also, my eyesight has changed so. Much more far sighted than before.
I am interested in everyones response.
Janet

[Susan Rankin]

Hi Janet,

I also have had decreased vision since being on Herceptin. I hope it will improve when I finish up in two weeks. My fingernails are so thin. I have put on extra weight also. My nose is runny all of the time but this started when I had my first chemo in September 2004.

I will be happy to be off of the herceptin but will be scared to death I will have a recurrence. My oncologist says I should be more positive and the Arimidex will be working to keep the cancer from returning.

I was diagnosed in July of 2004 so I am coming up on two years.

I will post on how I am doing when I finish up with the Herceptin.

Susan

[sherri]

Hi Rhonda,

I finished my last Herceptin on May 11. DX December 23, 2004, Chemo 6XAC+T every 2 weeks, 10 days after the last one had Mastectomy On April 15, Radiation and Herceptin started on May 15, 2005. Now I feel good, and I have more energy, hoping to lose the extra weight and planning to do the reconstruction by the end of this year and climb Mount Everest next year. I enjoy every moment of my life, I spend a lot of time in nature, I go to a Boot Camp every other day at 6:00 AM and hike 3 to 4 times per week. It seems I'm becoming more normal every day. I think about recurrence some times, but try to be positive and if it comes back I'll deal with it then not now. As someone else said "Life is good" and beautiful!

Big hug,

[margaret]

I fininshed my last treatment of herceptin in March 2003. I've had no medicine since then and I'm extremely grateful. I was stage 3b in Nov. 2001 and told I had a poor prognosis. Right now, I feel completely cured and am living each day to the fullest with much gratitude and very little fear. I had gained about 10 pounds on the herceptin so after I was done I was able to lose weight fairly easily. I work hard at keeping a strong immune system. To me, my health is all about my immune system and there are many factors to having a strong immune system. There's the basic eating well, exercise and sleeping well. Also there's emotional and spiritual wellness that contribute to the immune system. I work hard at clearing away negative emotions, not holding things in, and filling up on the positive. Stress is also a major factor. I find ways to keep my life as stress free as possible.
I highly reccomend yoga and meditation. It's shown me a whole new way to take care of myself and feel free of fear and I'm learning ways to fill my life with love and joy.
Good luck,
Margaret

[kat in the delta]

Has anyone here had reconstruction after chemo and rad. ??
I would love to look a little sexy after my last Herceptin,. and take out this port. and wear something a little lower.
Right now, I feel depressed over the shorter hair and big port., no right breast... etc... plain UNATTRACTIVE !!!!! what are some options for me---really depressed. kat in the delta

I had my last herceptin treatment 5/26. I hope the side effects such as insomnia, weight gain, joint pain and constantly breaking nails will disappear.Oh, and my energy level get back to normal. I have never felt so tired in my whole life as I have this past year.
However, I feel very fortunate that I was able to be on herceptin and now am a bit anxious about...... " what now" ??
Dx 3/04 2.2cm tumor .. 4/18 nodes pos. ...partial mastectomy and axillary nose dissection A/C and Taxol dose dense and 33 rads.
Feeling good ( except tire more easily ) and frankly I look pretty darn good for an "ole girl of 65.
I haven't logged on for a while.... good to be back.
My best to all of you.
Carol

[geraldine]

Rhonda..

11th July is looking like the date for me..

I have been on Herceptin since dec 2003 and my onc, is now wanting to monitor me off this wonder drug.. Like you, I want to know the after results.

I have had so many different ailments .. i.e. bone aches, skin problems, eye problems, nail problems and quite a few more...I hope all these problems are a direct result of Herceptin, cos if they're not...!!!!!

Herceptin is a safety net and after 2.5 years on this wonderful drug, it will be very difficult to adapt to having no treatment.

Janet, I was lucky enough not to have needed a port, or Hickman Line as it is called here. My veins, weathered the storm, so to speak

Hey...! I am gonna miss everybody @ ward 4c Gartnaval Hospital if I'm taken off Herceptin.

Margaret, I am 100% behind you when you talk about the immune system. I believe we are what we eat and what we eat contributes to our well being (immune system)
I also believe in the power of our mind. I believe in the theory that, if you want to die ..you will.. If you want to live .. Fight
Hey, I will go KICKING...!!!!!!

Tami, well done you for even thinking about running. I ran the 10k ladies last year, or should i say i power walked it and it was the best feeling ever to cross the finishing line... Go for it Go Girl !!!!!!

Rambled on long enough, all i can say is sorry !!
God Bless
Geraldine

[MCS]

Dear Kat in the Delta,

You could be my twin! I have no right breast, hair hardly growing, tired all the time. Lost my job, a big source of self esteem, etc

I will be going re construction hopefully later this year,although I had no rads.

Hercepting every three weeks if heart pumping ok.

It's understandable to be depressed. I am there also. But just think how far you have come. Look inside you and around you and the things you have experienced becasue of this. And how much life you will have after.

XOXOXOXOXOXOOXOOOOXXXOOO

Maria ( MCS)

[Les]

Hi everyone, I was never on herceptin bad timing I finished treatment 4a/c and 35 rads in july of 2004 and now just on tamoxifen. I still have not regained my energy. It is a struggle to stay awake Ihave a small cleaning business and before bc it was no problem to clean for 6 hours come home and do everything around the house now 2 or 3 hours and I'm headed for the bed asap.I hope that when I finish the tamox I will feel more like myself. thanks Leslie

[kat in the delta]

Unregistered guest,
Register ! You sound like me. I am 52 but had a port. Some people are resistant to herceptin, has anyone heard that???? Were you ER positive(+) and what about PR ?? Will you take an aromatose inhibitor??like aromasin(my spellings are probably wrong), or tamoxifen ??? Kat in the delta

[kat in the delta]

Susan,
When did you start taking arimedex(sp?) ???? After all herceptin treatments ??? I am slightly ER +, but after listening to a teleconference I think I am considered ER+, but my ONC has yet to give me anything--I am post menapausal, also. What do you or ANYONE think ??? kat in the delta

[sadie]

kat,
My onc said I will start Arimedex when I am through with radiation in 2 weeks.
I previously had AC x4; Taxol w/Herceptin x12; Currently on Herceptin every 3 weeks until Feb 07.