Take Two Update and Goodbye Dr. Paul Klimo :(

So we ventured back to Lions Gate Hospital yesterday morning and I had my first treatment of this new protocol. So far, doing pretty well. I managed to get in touch with some of the women who have been on this set of drugs in the clinical trial setting and they all said that they look minimal anti-nausea drugs and steroids and did fine so that's good enough for me. To be honest, although I am grateful for all the different meds we have now adays to combat the side effects of chemotherapy, sometimes it's just too much and it's actually these meds that cause some of the worse side effects. For example, Decadron is a steroid (i think) almost always give through iv before your chemotherapy starts. It's suppose to reduce the chances of an allergic reaction. However, it causes you to feel really wired and not in any sort of a good way. It's very hard to relax but you can't think straight so it's hard to get anything done; hard to even have a normal conversation. It's just a really crappy feeling and then the next morning you feel like you have a bad hang over. I always thought it was the Decadron that made me feel this way and now thanks to getting a hefty dose it by itself the other day, now I know that it is the Decadron. I am going to ask for at least half doses from now on. One of the nurses I asked yesterday said it shouldn't be a problem; especially now that I have had my first treatment without a reaction.

I've also heard from a woman on the Triple Negative Foundation discussion forums (continue to be SO helpful!) that there is a cream called Miltex that can really help with triple negative skin mets. But of course it comes form GERMANY!! Actually, I should mention that my dear friend Kathy was the first to tell me of this cream but when I first tried looking it up it seemed it was impossible to get hold of and couldn't really get any good info about it. Anyway, thanks Kath! When the name of that cream came up on the discussion forums I was able to get some more detailed info about how to go about getting it.

Today is officially Dr. Klimo's last day. I don't think it's really sunk in yet; it was just such a short time ago that he seemed to be my only hope. I really wanted to attend his retirement tea this past Friday but it was Treydon's sports day and I couldn't miss that.

Over the past six months that I've been writing this blog I can't tell you how many people have sent me messages to tell me of their experiences with Dr. Klimo. Every single person has reassured me that I was in the best possible hands; he has saved so many lives. Even people that didn't have personal experiences with him have "heard" that he is the best. So even though I have this ridiculous, horrible, rare form of breast cancer, I truly felt that I was in the best hands. My only regret is that I didn't switch over from the Cancer Agency sooner :(

This is a very sad day for many cancer patients. I'm really going to miss waiting in the chemotherapy ward for my appointments. It was always a long wait but so much fun to watch "the Dr. Klimo" show (as I liked to call it) The way he would be going back and forth seeing more than patient at a time and then just randomly pulling people in from the waiting room; much to the frustration of the clerk trying to keep track of all the patients he needed see in that day! It was crazy but it was his way and it WORKED! Anyone who has sat in that waiting room more than once knows exactly what I'm talking about. It makes me laugh just to think of it!

I'm so sorry that I missed his retirement tea but maybe one day someone from his family will come across my little blog and can report back to him that yet, another person has been so touched by his true dedication and commitment to giving people the best damn cancer treatment available.

So here's to Dr. Klimo! May you have many, many years of good health to do whatever it is that brings you happiness. May you live the rest of your life KNOWING that you have MADE A DIFFERENCE!

I came across this article if anyone is interested to read more about him:

http://www.nsnews.com/entertainment/movie-guide/education.0899/Last+call/4971585/story.html?id=4971585

PS I was very surprised to learn that he will be turning 70! Wow. He doesn't look it at all.

Annoyed

So my appointment was at 2pm. Kathy drove me out there and then they said there wouldn’t be enough time to have it because I have to wait hour after the parp is given to make sure that I don't have a bad reaction – so annoyed. They had already hooked up my port AND given me the freakin decadron which is almost as bad as the chemo. Anyway, I’m home now, wired, can’t think straight, bad headache –all from the decadron. I have to go back tomorrow at 9:30.

I’m on the Special Access Program for Iniparib (parp) with Gemcitibine and Carboplatin. I was on Gem and Cisplatin before and everything I’ve read said Carbo is easier on you but apparently the nurses there don’t know that – they say it’s worse and I’ve got 5 didn’t anti-nausea drugs to take - ridiculous – I can’t even imagine what all the side effects of those will be.

 I have to go there twice a week for treatments day Day 1 and 8 is  Gem and Carbo and  parp on then days 4 and 11 is just the parp. Then one week off. (three week cycles)  This is the exact protocol I was looking into with the clinical trial in Seattle.

I’ve been on the Triple Negative Foundation discussion forums (very informative) and it seems this does work really well for some people. One woman started in this trial last year and has been on it ever since! It cleared everything up and her dr doesn’t think she should come off until it stops working. CANNOT even IMAGINE!

oh well. I guess I just have to be thankful there is something to try.

Dr. Klimo said the idea is that you do it for a few months and if it works then you continue with just the parps. From reading what others in my situation are going through it seems if you find something that works that you don’t stop until it stops working. There are many people on the discussion boards who have tried the parps and they didn’t work. Anyway, I am really hoping that it works and FAST- having lots of body aches and pain – taking Advils round the clock and my skin mets are getting really bad and uncomfortable. These are the first "symptoms" I've ever had from my cancer and it seems to be getting worse by the day.

F%@K!!

Last week I went to see Dr. Klimo because of a rash I've had under my arm for about a month. In the past week it had become much worse and didn't look like just a "rash" anymore. Dr. Klimo said it looked like cancer and sent me off for a biopsy. I asked him to book me into the private PET scan clinic; I didn't want to be waiting any longer for the BCCA.

I had the biopsy done the next day at Lion's Gate Hospital. The surgeon who did the biopsy also said it looked like cancer.

I came home, phoned the PET clinic and they said they could get me in the next day, which was Friday. I came home Friday after the scan with the disk and looked at it on my computer.

It was really, really bad; much worse than my original scan back in December.

I saw Dr. Klimo this morning. He said the scan was "shitty". The written report confirmed that it was much worse than in December and the skin biopsy confirmed that the cancer had spread to my skin and it too, was triple negative. We are going to start on the Parp Inhibitors that just came available here. They are given through IV with both Gemcitibine and Cisplatin - the chemo drugs I just came off. I will start sometime in the next month.  I will stop the Avastin and Xeoloda pills but continue with the Zometa infusions.