Last chemo cancelled

[lisahammo]

Hi all

Just wanted to vent about my last treatment, and how disappointed I am. I went in for my 8th treatment of Taxol/Carbo/Herceptin, only to have it cancelled. Since I had my port inserted 3 weeks ago, I have been giving myself daily Clexane injections to thin blood, as I developed a clot the last time I had a port. However, my platelets were low last week, and this week, after dropping the Clexane back to every 2nd day, my platelets have dropped again, and also my Haemoglobin. So cancelled.

I now have to stop the Clexane altogether, and keep my fingers crossed that I don't develop a blood clot, and I am having 2 weeks break, to see if my bloods come up. I am so frustrated, as in my opinion, my liver levels are not dropping quick enough for my liking. I was hoping to get rid of the 3 tumours within 6 months, otherwise I will just be back for more chemo again within 12 months. This disease is just not fair.

Thanks for listening.

Love Lisa

[Chelee]

Hi Lisa, Your NOT alone when it comes to seeing how many on these boards all seem to know everything about their results. That was my biggest complaint at my LAST appointment to a NEW oncologist I requested to see. My orignally oncologist was the youngest guy there and new compared to the other doctors in that center. I always took notes with me full of questions to ask him. Many I got from reading this board. I wanted to be involved and KNOW what was going on with me and my treatment? I didn't think that was too much to ask.

It was like pulling teeth with my first oncologist. He said he had no problems telling me anything...but I would ask him a SIMPLE question and some how he would talk and tell me nothing. ARGH!

Now this NEW oncologist I just saw a week ago...I told her how my first oncologist won't tell me anything it seems. I told her how I have asked him I don't know HOW MANY times "When will I have another ECHO of my heart now that I am doing the herceptin". I informed her how he would just answer with this, "Oh, sometime...don't worry about it". She said there is no excuse for that...then followed right up with NO hesitation and said I would have a ECHO every three months. Then I asked her all kinds of questions that he never answered...she had no problems answering anything I asked. :-) Such a NICE change.

That was my first visit to her as I mentioned...and she thought I was there for JUST a second opinion. I told her NO...I am here for another opinion...but I ALSO want a NEW doctor...and hopefully that will be you. :)

She said no problem. So now I can't wait for my next appointment..I will finally be able to get answers to my questions without leaving each visit being totally frustrated & knowing nothing. Its my body...and its my battle to fight...and I have every right to know what drugs are being used...how much...and why...WBC...and everything else that goes on. This new oncologist agreed and couldn't believe her "Peer" didn't tell me any of these things. I hated being let out of the loop when it comes to my own treatment.

Like you said Lisa...I read on this board and another one I visit...and it seems everyone knows how much of each drug they recieve in their chemo...their white blood counts...their tumor markers as you mentioned...and you name it. People ask me things....I haven't a clue.

Like you...one of my first questions at my next visit will be about my tumor markers? Heck...had I not been on this board I didn't even know they check tumor markers? I plan to ask my new oncologist about my tumor markers...and when...and how often they are checked??? Like you...I have no idea. So I know how you feel.

The only thing I can tell you for sure that my doctor told me is...as to ECHO's and muga's...she said they always do them every three months when on herceptin. That could change with other doctors...but that is what I was just told my mine.

Since you have been on Herceptin for 20 months...you certainly should of had a ECHO or MUGA by now. I think that is really pushing it a bit much for your doctor to go that long without checking you out. Six months would even seem long...but 20 is un-aceptable to me. But hang in there as others on this board know so MUCH MORE then I do. They will help you out.

If I was you...I would give your oncologist ONE more chance to answer your questions...if he/she can't or won't do that...I would switch doctors just like I did. I got MORE information in ONE visit with this doctor then I did over a three month time with my first one. And believe me...I had alot of visits with him...not to mention after I was put in the hosptial for 10 days...I saw him daily in there and TRIED to get my questions answered...which never happened in there either. :(

I really didn't want to change since I was use to this doctor...but this NOT knowing anything was frustrating to say the least. Plus it just got to the point where I flat out did NOT trust him and what he was doing with me. He KNEW my WBC was low for three weeks...waited till my counts were 116 to call me at home...too late...ended up in hospital and that delayed three weeks of chemo. I can't afford to be missing chemo with my stage IIIA status...Her2/Neu 3 +++, Er & Pr positive. Seems like he could careless what happened to me. (I didn't know at that time he was SUPPOSE to of given me a shot of Neulasta when my counts where low.) He never did. He KNEW the first week my counts were low...at that time I had NO idea I was suppose to have this shot...all this is NEW to me. I would of NEVER landed in that hospital...nor missed all those weeks of chemo...plus my lungs are still messed up thanks to him and I am at home on oxygen still thanks to him.

So if you can't get your simple questions answered...switch doctors! No doctor should have a problem with you WANTING and NEEDING to know what it going on with you and your treatment plan. Don't let him/her get away with it any longer like I did. It could cost you in the long run. Its your body and you have a RIGHT to know these things...its really that simple. Good luck to you.

Chelee

[jhandley]

Hi Lisa
Taking magnesium will up your platelets ..take 2-4 x 300 mg /day and then reduce it to 2 x300 mg/day when your platelets =300 (see Gina's post). Dont worry about having a break..use the time to bring your immune system up. You could try "immume support" available in most Aussie health shops which will up you white blood counts and contains reishi and astralagus extracts (which contain 1,3 Beta D glucan which makes the herceptin work better as well.)
cheers
Jackie

[Toril]

Dear Lisa
Hope your feeling a little bit better today. I know you are disappointed, but hopefully theese two weeks is just what you need. Do something nice with your son or something extra for your self during the day. And your numbers will be better the next time!!
Fingers crossed you will be ok with your port this time!! I have had mine since last September, and have never had a problem with it. It is a blessing.

But in the meantime: Try not to worry, enjoy your two weeks.

Love Toril

[tousled1]

After my first chemo treatment (A/C) I developed blood clots and was afraid my port would have to come out. My next round of chemo was delayed because of low blood counts but my port is still in and working fine. I'm taking coumadin everyday and get my clotting factor, etc checked at least once a week. Everything is fine now and I've had no more interruptions of my chemo. Hang in there things will get better.