The Complete Egg

The before, during and after of a molar pregnancy, with a side of chemo and a 12 month wait before ttc. And most recently: experience of a healthy pregnancy.

Tuesday, September 12, 2006

When exactly did my doctors start talking chemo?

I am one of those people that want to be totally prepared and know what to expect in case I fall into the worse-case senario situation. I asked a lot about chemo treatments before I even got to that stage (some might call me a pessimist but it makes me feel better to be informed).

My levels did go on to rise (it went like this: 3270 to 3034 (this was considered a plateau because it was a less than 10% drop) to 3434 to 4400). Doctors usually suggest chemo if your levels plateau for 3 or 4 times or they increase over 3 or 4 blood tests. Click here for research detailing "Criteria for the Diagnosis of post hydatidiform mole trophoblastic neoplasia (GTN)".

My doctor explained that usually she doesn't get too worried if hcg levels plateau once because often it will fall again.

Sometimes if you go down to a very low number (under 100) but you don't go down to zero levels (less than 5 is considered zero) in 4 to 6 months from post d&c blood test, then they may treat you with chemo because the trophoblastic (aka. placental) cells are still persisting. The rule of thumb is that if they are falling (especially more than 10%) then things are looking really good.

Apparently most women take on average between 8 to 12 weeks for their levels to fall below 5 and some take longer. It seems to be very individual even though I was told to expect 10 fold drops each weekly blood test (the levels drop more slowly at the end like from 10 to 7 to 4 etc.) because hcg increases and decreases like on an exponential graph (think hockey stick shape).

In my case, when my levels started to rise, they did a chest X-ray to determine if the cells had metastasized (moved to other areas in the body besides the uterus). If the cells are in your lungs then that usually means that they are in/or on their way to your brain and this puts you in a higher risk category and you will likely get a stronger chemo treatment. Even if you are high-risk, it is very curable. I am on the low risk chemo "recipe". For me this is methotrexate and actinomyacin (aka D-Act or Dactinomyacin). I go in every two weeks and stay overnight because I need to have an IV. They inject the chemo (it's a liquid) through the IV and it doesn't hurt or anything. The metho is dripped in with saline, again through the IV. The saline is cold so it feels cold. It didn't hurt me to get the IV inserted in a vein. I'll have treatments until my numbers come down to less than 5 and then 2 additional treatments. I'm glad that I'm at a cancer centre because they seem to be really together and have treated this for years there. Everyone in the province who needs this treatment is treated by them.

I was so scared before the treatment but it turned out to be just fine. The nurses are great and once you get the IV in, it's smooth sailing. You do feel a bit weird - tired, groggy but I haven't felt nauseous (they have good anti-nausea drugs now). Everyone is different though and responds a bit differently. I was told that this chemo does not make you lose your hair but can thin it out. So far (this is my second treatment), I haven't noticed my hair thinning.

Every cancer centre seems to have a slightly different recipe depending on their experiences in the past with patients. From what I've read on the internet and on forums, I think that many women just get out-patient shots of methotrexate every day for like 5 days and then they have 5 days off. This continues until their numbers drop to zero and then there's a couple of treatments after that. At the Cancer Centre I'm at, they tried that recipe but they had too many cases where women became resistant to the methotrexate and it stopped being effective. Then they had to move on to stronger drugs and it prolonged their treatment and the drugs were much stronger. They said that they find the treatment that I'm on is the most effective treatment for curing people with GTN (gestational trophoblastic disease) in the shortest time possible.

So who knows, maybe I would have done fine with just the metho shots but at this point I thought why gamble? Plus, I don't think that there was a choice involved. So, I've been told, there are no long term harmful effects of this chemo. Your cells replace themselves. You do not get secondary tumours (this is a case where your chemo can cause other tumours to form - weird, I know). They have cured everyone that they have treated. It is considered a success story in women's cancer treatment. So while it is unpleasant and a drag, it totally takes care of the problem and there is little chance of it recurring and you can go on to have babies. I was very scared about this whole thing before I had the chemo and now that I know what to expect and my levels have gone down with treatment, I feel pretty okay about it all.

Chemotherapy is a drug that kills cells. It's not specific so it doesn't just kill the trophoblastic cells (placental cells), it kills other cells as well. I still don't entirely get it. Does it kill off a percentage of the cells? Someone on chemo last told me that he thought that the chemo goes to where the immune system (and white blood cells) is working hard to fight something off. I've also read and have been told that chemo kills the fast growing cells (hence possible side effects like mouth sores, hair loss, etc.) and placental cells grow fast.

Most women don't go on to have to have chemo. Especially if you've had a partial. I think the stat is 2 to 5% of partials need chemo. Stats aren't always helpful though. I found out that only 13 women in BC last year needed this treatment. That's not very many. Of course, it is a much bigger number if we included all the molar pregnancies.

Again, the most important thing to remember is that GTN is totally curable and it does not effect your fertility.


Anonymous Anonymous said...

Hi Chantelle, have a question for you, I know you are busy with other things, sorry. I am just finishing my chemo. Last 3 HCG were 4.6, 1.5 and >1. According to you blog, you were done at this point. Did I misunderstand the doctors? I thought I had one more yet, but they mailed me appointments and did not give my next chemo time. Now its the weekend and I can't phone to ask? I am on Vancouver Island, so i think the protocol is the same. All it says on the web site for the BCCA is two normal BHCG rating, but does not specify what normal is??? Any info you can help me with-I would love you forever!!!

9:45 PM  

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