Want to talk with ER/PR neg and HER2 pos

Hi Catherine
I am new to this completely and on a different continent so hope this works!!!..and would love to hear from others in similar circumstances.
I am also 58 years- diagnosed with Grad 111-Breast cancer in August 2006.... which had spread to lymph glands- 10 positive out of 28 (3.5-4.5 cms) removed...They were unable to identify any cancer in breast even on MRI but surgeon expects its either small and undetected or my ?good immune system eradicated it so no breast removal.. ....My understanding is that you do not have advanced breast cancer...it may still be considered early breast cancer.....the stage and grades are important to note...however.....Metastatic refers to any cancer that has spread...in the true sense of the word,,,,the risk for me is there is a chance of recurrence.. hopefully not so!! .in view of the Grade and size of cancer in my case it is considered stage 11B (early)...so need to look at size of nodes.
I have completed four cycles (three weekly) of AC treatment (adriamycin + Cyclophosphamide) and started Taxotere and Herceptin two weeks ago (and have three more cycles ) and then 25 radiotherapy sessions to superior clavicular area and right breast and then ongoing Herceptin, all being well for a total of 12 months.....So far have been able to work ...probably 75% of normal- but normal for me was 12 hour days running a medico-legal business and so cut back hours especially one week post chemo.... as was hard to see injured/disabled clients then. Interestingly the last treatment was tougher than the A/C regime for me as I had painful joints and felt like spikes in all orifaces....unsure if it is cortisone effect or Taxotere.....fortunately painful joints dissipated after about eight days post chemo but still feel very tired...and am hoping I can manage the remaining chemo better than this last one...it seems to become more managable when you know which medication you can take to assist the side effects..and pace yourself and keep positive.....the chemo is healing hopefully.....I would love to hear if others have had the same experience as me. I also have had the metallic taste only since last chemo and that is unpleasant....any remedies...I brush my teeth with moisterising toothpaste/gels use mouthwashes, biacarb mouth rinses and tried Nexium--the latter probably the best to date.
Keep smiling and enjoy every day!!

[Catherine]

Hi Margi,

Yes we can all get on the same site and communicate and compare notes even Australia to Oregon. I completed all of my chemo in August before my surgery. Chemo was not fun, but I made it. Taxol was tough on me.

Are you having Herceptin along with the chemo? I am only on Herceptin now.
See my profile. I am still trying to navigate this site.

More later, all the best, Catherine

PS I barely work 50% of my former schedule. I love taking time off and being good to myself. I excercise and sleep as much as I can.

Hi Catherine- it's good to hear from you....and yes I am still trying to understand how to navigate around this site also...and understand some of the different words used.
Taxol is different to Taxotere...but similar class of drugs...and I am on Taxotere and yes, started it with Herceptin as an infusion two weeks ago.... I finish Taxotere on 16 February and will continue the Herceptin for the twelve months apparently.
I am just hoping I do not have the same side effects for so long next Friday when have second Taxotere.

Did you find it became worse with Taxol each time?- Accumulative fatigue I guess after all this chemo too.
My neutrophils dropped significantly (0.6) after my surgery to remove lymph glands when I started A/C chemo so I now have neutropenia and have injections of Neulastin to boost the white blood cells in bone marrow twenty four hours after each chemo session.
I see the oncologist just before I have chemo- this week two days before so will discuss my side effects in case my dose needs to be adjusted as had aching joints for 5-7 days, flu type symptoms (I know Herceptin can cause this) for which I take an antihistamine and epigastric discomfort for which I take Nexium as well as the awful metallic taste which has dissipated a bit thankfully.

Did you get any similar symptoms on Taxol? and have they dissipated now that you have finished it?

Fatigue is amazing and you just have to rest and sleep as needed don't you? Thankfully it does not usually hit me until late afternoon or early evening but like you sleep/rest is essential and pacing oneself....you cannot do otherwise and you really get to know your body I think...

And I also know that exercise is the key- the oncologist had advised me to walk to eradicate fatigue and I know when I do something such as walking or heavier gardening feel great and need to do it more......I was weeding bent over for ages recently in very hot summer weather and although it worked up a sweat felt so good afterwards...the key to know this and do it more often. Is Herceptin alone causing you ongoing fatigue? Did you find radiotherapy caused fatigue?

All the best Margi

[tousled1]

Margi,

When I was getting my chemo my blood counts dropped - both red and white cells. I was getting Procrit shots the day of chemo for the red blood cells and Neulasta the day after chemo for the white blood cells. I also had bone/joint pain with the Taxatere. When I was on the Taxatere I received Decadron (steroid) as a pre-med so I attribute a lot of my side effects to that. Chemo does have a cumulative effect but you will get through this.

Thanks for your reply.....yes I think the cortico-steroids that you take pre and post Taxotere for the three days can cause a lot of the problems..as I had this spiking feeling in all orifaces and with joint pain felt Id go crazy if it lasted...but the spiking feeling disappeared after three days..the GP (local doctor) felt it may have been the steroids....I am hopeful it will become less...the consolation is that you hope you are being healed...dont you?..and you have obviously come along way and have similar treatment.
How have you found the Herceptin?...most people say its very tolerable after the chemo.
all the very best Margi

[tousled1]

Margi,

In comparison to the other chemos that I had, I must say that Herceptin is a walk in the park. My counts (red) still drop and I still get Procrit shots about every other treatment. There is a thread here about sides effects of Herceptin that you might find interesting. It's entitled "Herceptin side effects real or perceived."

[Carol Carlson]

they call it micromets, if it has gone from breast tissue to lymph node involvement.... at least that is my understanding.
Carol

Hi Kate- can you please help me find the thread to the article on Herceptin side effects..real or perceived?...have gone though a few pages to find it..with no luck..is there a page number it is on? Thanks!! Margi