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

[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.)

[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.

[judy]

Hello All:

I finished Herceptin mid-April. My course of events was: Aug/04 diagnosed with Stage 2B bc her2/neu+++ er/pr-. Had double mastectomy with reconstruction, 4 cycles AC, 12 weekly taxols, herceptin every other week for 1 year.

Major side-effects:

Extreme shortness of breath (right heart congestive heart failure)
Joint pain
Drippy nose
Crummy nails
Very fatigued (although could be from heart meds)

The CHF is the most troubling. I was never at all depressed during surgery, chemo, etc. It all seemed very transient. CHF, however, seems like it could be more permanent. I think it's been a slight bit better than last few weeks. Therefore, I believe it was from the Herceptin, even though it is right side and not left side. My cardio & pulmonologist tell me they've never seen right side without left side with my particular characteristics. Called Genentech and they took a report.

At about 8 weeks out, my nails are a little better, my nose does not run, my hands don't hurt quite as much. Energy still stinks -- but it's probably heart related.

I had a birthday/end of treatment party last week. We had a wig burning ceremony!

Good luck to all. I let you know if all of these side-effects get better.

Judy

[Susan Rankin]

Hi,


I started taking Arimidex in May of 2005. I started weekly Herceptin in June of 2005. Just had my last infusion on June 20, 2006. I just changed over to Femera six weeks ago due to joint pain with Arimidex. Actually I am still symptomatic so I think it might be the aromatase inhibitors causing all the joint and muscle aches.

I will post on how I am doing post Herceptin soon. Actually I think I already feel better and it has only been four days!

Is anyone experiencing mouth ulcers, gum tenderness taking Femera or Herceptin. I have had quite a few in the past six weeks.

Susan

[kat in the delta]

My sister was not HER2 +, but took tomoxifen for 5 yrs., now on aromasin. She tried Femara, but said it also made here joints ache, etc....so was switched to aromasin(sp?). Since then I have others complain about the Femara making them ache and stay in pain. Maybe ask Onc. to switch one more time. Did you say you started taking an aromatose inhibitor after herceptin or during it ?? I am ER +, I finally discovered and will finish my 1 yr of herceptin July 28th, but have not had anything for the ER part---- any answers to when to start somthing for ER+ ?????--- kat in the delta

[kat in the delta]

I am almost finished with a yr. of herceptin. Herceptin made me achey. I have discovered that the "weakly" Positive ER makes me ER+. When did or will you or anyone take an aromatose inhibitor for ER+ ???----- during, or after Herceptin ???? kat in the delta

[Becky]

I started taking tamoxifen right after rads. I then got my ovaries removed and started Arimidex (and Herceptin). I am still on both. Usually the (anti) hormonal is given right after chemo and rads are finished. Nowadays, Herceptin is started either with the taxane portion of chemo or right after chemo is over (but continues thru rads). But the anti hormonals are always given after chemo and rads are both over.


Kind regards

Becky

[Susan Rankin]

Kat,

I started Arimidex in May of 2005 when I finished radiation. I then started Herceptin in June 2005, weekly, for one year. I changed over to Femara about six weeks ago and my joint pain is a little better. If I stay active, I am almost pain free. It is when I sit or sleep too long, and then I feel like I am 100 years old. I am happy to be off of the Herceptin. I finished on June 20 and maybe that is why I feel a little better. I will post as to how I feel as time goes on.

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

[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