Back into the land of treatment....sigh...

I think the joint pain is from the other drugs as I still have especially if rain is coming. It is 4 years since I finished Herceptin. I have joint pain and arthritis in many joints now which combined with issues from lymphoedema mean can't always type easily on my comouter.

I have been on Arimidex since APril 07 and may continue on it for a further 5 years given what surgeon told me last week. If the oncologist wants to keep me on it I will stay in spite of having most of the common and some unusual side effects. My allergies are worse since surgery but are the hayfever, conjunctivitis, lactose intolerance and other issues from chemo, radiotheroapy, herceptin, arimidex or just ageing? 

Lymphoedema is the only one directly attributable to my surgery & treatment. Even my Osteopaenia & cholesterol issues may only partly be from Arimidex as I have a family hisotry of osteoporosis which can be genetic & had some cholesterol issues which seemed to have resloved themsleves some years prior to surgery.

I'm just glad to have been diagnosed by Breastscreen early enough to still be here & to have seen some weddings of a son, Stepson, nephew and family friends children - now waiting on the next generation to come in the next few years and further weddings to take place

Hi Celeste, yes I have what they call a Gated Heart Pool test every 3 months it apparently checks that your heart is strong enough to pump the correct amount of blood around your body. You should have had one done before you started Hereceptin so that they had baseline to work from, mine was 63%  which is good and I did go up to 67% on one of the tests but am back down to around 60% last time, due for another in January.

Onc and GP say my joint pain is from Femara but I reckon it got worse when I started Herceptin, I was on Femara only for about a month so was able to notice the difference.

Hope it works you

Sue xx

Hi Sue, yes have started Herceptin (just had my 2nd dose yesterday)  but it is also in combination with chemo, so its difficult to know what the side effects are for Herceptin specifically. I do get the strange nose issue you mentioned...dry, crusty nose yet runny at times, and had headaches last time too. I get joint pains also, but not sure if this is from the chemo or Hercpetin. My understanding is that I will also be on Hercpetin every 3 weeks indefinately. Yes, the port is wonderful...I'm so pleased I got it put in. I had it accessed for the first time yesterday and it was great!

Do you get tested to see if the Herceptin is working for you?

Take care Sue,

Celeste x

Hi Celeste

I have been on Herceptin every 3 weeks for the past 2 1/2 years and will be on it until it stops working for me. The side effects for me are fatigue, dry crusty nose but runny occasionally as well (weird) headaches and my eyesight has deteriated (I am short sighted). I'm not sure if other side effects are from Herceptin or Femara which I started 2 months prior to Herceptin, those side effects are joint pain, insomnia, hot flushes and  heat stroke when I get to hot.

I had a PowerPort put in about 12 months after I started as my veins collapsed and it is excellent I even get the CT scan dye in it and they take blood from it as well so it's only one tiny prick instead of a couple. Although I have had minor problems with it as it moved and now is tilted down and to the left so they have some trouble getting into it but nothing like the trouble getting in my veins.

Sorry I am late responding but better late than never!!!

Have you started the Herceptin yet ? if so how is it for you so far?

Sue

Thanks Chrissy..I will certainly look into it x

Thanks Helen...sounds like the portacath may be a good idea x

Thank you Beka for your comments. It sounds lke a portacath might be the way to go! I was taking Lapatinib (otherwise known as Tykerb) for one year on the clinical trial. Yes, there were a few side effects..I got a very itchy rash, the runs, fatigue etc etc..but they told me the side effects would be much more with Herceptin...(?) You are right, I think it is the sister drug to Herceptin (one works from attacking the inside of the cell and the other works from attaching to the outside of the cell). I have been told that Tykerb (Lapatinib) is potentially not as effective as Herceptin for early breast cancer, but I understand that Tykerb is being used successfully in the USA to treat mestatic BC. From what I understand, Tykerb is more successful in combination with Herceptin (but I will check this out with my Oncologist on Monday). Thanks for putting my  mind at ease about Herceptin, best wishes Celeste :D