Double Whammy!!

[JoJo]

Today was a 2-fold surprise for me....

First, I have failed an echo for the 1st time ever at 49%. I am officially off from Herceptin. I expect to have another echo in 3 weeks. I was actually surprised because I did not have any shortness of breath or coughing.

Lastly, my tumor amazingly has grew back to its original size!! :-( Plus, the whole left cerrebullum is all swollen. I HAVE to get on Decadron to reduce the swelling. I hope that this particular factor will not be a hindrance to my 2nd GK attempt.

Decadron is making me all jittery, I feel like my whole nerve system is all shot. My hands & knees trembly so slightly

Is this such a DOUBLE WHAMMY!!!!???!!

[Kristen]

Dear JoJo,
I am so sorry that you have to through this. You have had a tough battle. But you keep beating it and I have no doubt that you will kick it in the butt again. You are in my prayers and I know you are so strong, keep the faith. LOL k

[Lolly]

JoJo, I know it's really frustrating right now, but since your rate isn't THAT low yet, caught early it seems, hopefully it will bounce back and you'll be back on Herceptin before too long. I haven't had Decadron but I know others have talked here about the nervous energy it gives them, maybe the doctors can give you something to counter that? I'd sure ask about it if it's bothering you. Take care and keep us posted, together we'll get you through this rough patch.

Love, Lolly

[StephN]

JoJo -
Not the news you wanted on the tumor growth. I hope that darn tumor board will eat their refusal in Dec. with a few nails thrown in! G-r-r-r.

But - it is only a matter of getting the swelling down so that you can have the procedure.

For the sleep problem (and maybe the "jitters") - try CalmFort (I think that is the name). I have another friend who can't take the things that also bother you and this is what she got at a chain drug store, so you should find it.
It is something natural and works well for her. She called to let me know in case I was still having trouble sleeping, but now I am ok with a much reduced dose.

[*_madubois63_*]

JoJo - so sorry for this new development. I am praying for you. Decadron sucks but it has a purpose. I get it every Monday via IV with my chemo. I do not sleep (at all) Monday night. I usually crash Tuesday evening and sleep off and on through Wednsday. I tried Ambien, but I just get a headache and I don't sleep anyway, so now I just plan projects to keep me busy while everyone else sleeps and clear my schedule for the next two days. I have been having a mild reaction to the Decadron lately. My face becomes very pink during treatments and then for two days I have pink, dry patches on my face. It's enough to make me wanna say STOP, but it is working for me..God bless Maryann

[Lisa]

Jojo,
I'm so sorry. Please remind me if you have Gamma/Cyberknife or WBR. How long has it been? My rad onc said that in the few weeks after radiation, tumors swell before they go away. At any rate, I'm sure your rad onc knows his/her stuff.

As for the Decadron, can you reduce the normal amount? Just a small amount worked for me. I still take it weekly with my Taxol, and I have had no major side effects. O.K., I DID order a single dip chocolate chip cookie dough cone yesterday...then went back for another. Maybe a have a bitty increase in appetite.

You will make it. And that's that.

Love and light,

Lisa

[Rozebud]

Do they have to take you off? I was told your muga could go down to 45% before they would be concerned enough to take you off. I've had ones as low as 53% and my onc was never worried.

I'm so sorry about the brain tumor growth. Is it possible that is just part of the process? I can't believe they will deny you a second gamma??

Totally unrelated but I am on steriods now too for a viral infection. They have me really jittery too.....

[Hope]

Jojo, so sorry to hear about your setback. Remember God is great! I will certainly keep you in my prayers. Yes, the decadron is nasty stuff! I just came off of it 3 days ago and I'm still shaking.

[Ruth]

Jojo,

Yep, this was a whammy...I am so sorry to read this. I am sure that you can overcome this and your positive attitude will help you get through it. Take care and I am thinking of you.

Ruth

[YogaGirl]

I am really sorry to hear about this double whammy, Jojo...You know, maybe it is a good thing you are off of herceptin - your tumors kept growing on it, so perhaps it wasn't the drug for you anyway. There are many others, and you just have to get the one(s) that work for you. I hope you get your GK. Have you and your doctor considered Taxotere? How about a platinum based therapy (carboplatin? cisplatin?)? Are you on a bone-building drug (since you are young, all of the chemo could be leeching your bone mass, making you susceptible to breaks, etc.)? Hope you can get past the disappointment quickly and move onto fighting full force!!! Lauren

[JoJo]

For the life of me, I cannot remember when my headaches have become more frequent & more intense --- before or after my Portland, OR trip. You see, we had an ice storm there during my visit. I was walking to my rental car, of course, very slowly, and I had to go, anyways -- the ice skating competition was still on. As soon as I took the last step and finally grabbed the doorhandle, my shoes slipped right under me without my predicting the fall at all. It was a pretty nasty fall that my head was hit twice and my tailbone took a whamp once on the ground. Then there on I have been having a lot of headaches. So, I cannot help but wonder if the fall would attritute to my brain met growth. I just wonder how the whole left cerrebellum got swollen??? From the fall, or from the pressure by the bigger tumor??

Quite a somber mood this week, especially the fact that I have to focus on packing for my Hawaii vacation AND organizing my birthday party in the same weekend. Hopefully, I will feel better by the time we return home in 2 weeks and that will ride over until the Prez weekend, where we will have my birthday party. Quite a bit of contradictory <sp?> feelings....

And not to mention how Decradon is making me feel kinda weird, a slight upset stomach and my mind tends to wander off just a little bit. Well, I will have better answers about 3 weeks later for another follow-up with my onc as well as echo.

Many, MANY thanks to your encouragements & prayers, you have no idea how they made a difference in my dealing with this double whammy. Thanks again.

You all are in my thoughts / prayers. Hugs ~ JO.

[StephN]

JoJo-
"Keep on keeping on" as we used to say some decades back!
Good for you to keep up the travels in spite of the step back this week.

It seems to me that you have a two-fold reason for the headaches. You were already experiencing some before the Portland ice storm incident and more afterwards. Unless you hit your head in the fall at the same spot were the met is, this should not cause more inflammation at this area. But could cause some elsewhere.

If the met is back to original size - you then have a good deal of diffusion from the met (like I saw on my CD-rom films of my brain MRI). Time on the Dex will help that go down before next procedure.
The other bumps are also bruises on the skull and those ARE painful as well. They should go away before you get home!

Make sure you have a good stomach acid blocker as the Decadron will mess that up royally. I have to watch what I eat, to keep the churning down, even on 3 Ranitidine a day!

So, relax, and have the best time!

[Esther]

JoJo, you are an inspiration to me! You are dealing with everything, and still getting out there and enjoying life to the fullest. I still remember how jealous I was that you got to go to the Olympics!

Enjoy Hawaii, we were just there in Sept on a 12 day cruise, and it was just fabulous.

Remember JoJo, we're making history here! Everything can be dealt with. Keep on posting and let us know how you are doing.