A little update...

[dollfin1204]

Steve's last CT Scan (2 weeks ago) showed improvment but still some spots. He had lab work done, but the nurse that filled out the lab slip forgot to mark for his tumor markers to be checked! I was really bummed. Steve's next appt is Oct. 2nd. The nurse gave Steve the choice to come back in to get some more labs drawn, but Steve is being stuburn and doesn't want to go to the Hospital unless he has to. So he rather wait until the 2nd. I am still working on him to go in for labs, but at the same time I do understand he hates the hospital now.
He is finally gaining some weight back. He is now weighing 118. A few weeks ago he was only weighing 103(he averages 140lbs). He still is tired alot and doesn't have much energy. But he is looking 10 times better!
I have a question....
He has woken up 2 or 3 times in the last week saying that the back of his legs hurt. Has anyone ever felt that? Is that normal?

[Margaret]

I am not sure about the leg pain, but I wanted you to know I was thinking of you both.

If you need anything, please let us know.

Hugs

[Karen]

Are the leg pains muscle cramps, muscle soreness, or nerve pain? I am glad Steve's gaining weight and am sure his strength will come back little by little. He's had quite a battle. You guys are always in my thoughts as well.

[NavyHoldi99]

I'm glad he is gaining his weight back. I can understand his desire to not go back to the hospital until his next appointment...I think a lot of us have felt the same way.

I don't remember having any leg aches...but I did have some pretty bad restless leg syndrome for awhile. Are they swollen at all in any areas?

[dollfin1204]

Thanks everyone! I sometimes forget to post updates. I am always on the website reading. I guess sometimes I just get overwhelmed and scared ater reading and realizing this is my reality, so I forget to keep you guys updated. But I think of you guys all the time to. Believe me, you guys help me out so much. You make me feel like I'm not alone, when sometimes I do feel alone because none of my family and friends really know how Steve or I feel. They think they understand but they really don't.

Steve said the pain would actually be behind his knees, it feels like it's going to cramp up but actually doesn't.

Another question I have is.... I have read on many people's posts and profiles that when their HCG count is in the 100,000's they think that's alot. But yet Steve's at one point was over 777,000(I have the exact # in his "cancer folder"). Would such a big difference be because of the cell types...(Steve's being choriocarcinomas)???
Thank goodness it's now down to 19 the last time it was checked.

[dadmo]

Certain types of cancer cells have a greater chance of causing a rise in markers, but that 777K number would be more of an indication of the amount of spread rather then a clue as to cell type.

[ebfun7]

Not to ne naggy

Not to be naggy but he really needs to get his markers checked so you know where you are at. IF they go up it is going to take a little while to form a new treatment plan and he needs to start more chemo ASAP. I kow how bad it sucks to have to go back to the hospital but this is really important. If the last time they were drawn is mid August he needs to get them drawn again and not wait until October. I don't mean to be annoying I just want him to beat this thing. Dr. Einhorn once told us he likes to start high dose when the HCG is below 1000. That is not to say it wont work otherwise but that is what he likes to do. If the HCG was 20 and is on a upward swing then now it could be in the 200-300 range and in another two weeks over 1000. Then if it takes 2 weeks to start treatment it could be over 4000 by then. I'm not saying thats exactly how it will be but that is about the half life of HCG. Dr. Einhorn would be telling Steve "once a week markers until they normalise, then can you go to once a month."

The more cancer present the higher the markers with choriocarcinoma. It is as simple as that. My husbands was 512,000 when he was diagnosed. I know how it is to see most others with a 100,000 HCG and think "we are fighting a losing battle." BUT, you are not. My husband beat it. Good luck and please get the markers checked.

[Fed]

Another question I have is.... I have read on many people's posts and profiles that when their HCG count is in the 100,000's they think that's alot. But yet Steve's at one point was over 777,000(I have the exact # in his "cancer folder"). Would such a big difference be because of the cell types...(Steve's being choriocarcinomas)???
Thank goodness it's now down to 19 the last time it was checked.

The critical thing here is that choriocarcinoma always produces HCG, so every single renegade chorio cell (which, I might add, is a placenta-wannabe) will contribute to the reading. Dadmo is also correct in noting that the large value is a reflection of tumor burden.

If the beast is at bay, you can expect the values to drop even further, but the changes will now be minimal. Even if it is a nuisance, though, I do agree with ebfun7 in stating that no surveillance labs should be skipped, especially considering the stage at which Steve presented at the onset. It's good to know that as of the last read the HCG was 19, but I would bet you and Steve would feel much better to have a read that was at this point <10, right? Cheers,

[Karen]

I join Erin and Fed with anotehr push to get the markers checked. Erin is the voice of expereince on this and her lessons will help you through.

[sldl1106]

I have to raise my hand and agree with the other four votes. Has to be done, even though it feels like an inconvenience and he wants to distance himself from hospital memories. I'm with Fed, even if you have a 5 point drop, its a new reason to celebrate!

Rob is experiencing the same thing as Steve as far as the weight loss, exhaustion, and lack of energy. He was 20 pounds heavier than Steve to start but they lost roughly the same amount of weight. Can Steve eat whatever he chooses? I'm sure Rob would like to hear what Steve's been eating to get some weight back on!

[dollfin1204]

I agree with all of you! Now I just need to get Steve to understand the importance of it. It's kinda hard to carry a 38 yr old to the Dr.s

Steve can eat whatever he wants. He has had such a big appetite. I have never been to the grocery store as much as I have in the last month and a half. I try to make him all kinds of different meals including fast food. He eats lunch, dinner and someitmes 2 bowls of ceral after that. I have also bought alot of things he can snack on. I buy candy & cookies, that sort of thing.

[CharlieFL]

The first time I was sent to get my markers checked, the lab tested for everything EXCEPT for markers.... how aggravating! (I know cholesterol is important, but right then I couldn't care less about it). So, I had to go back the following week to yet another blood test..... I can relate to his hesitation but having the markers ready by his next appointment will do a world of good!