Got the Chemo timeline today--Update for all those who sent prayers

[princessesrule4]

I am keeping your family in my prayers and hope you have a wonderful trip!

 

[Harambe]

It sounds daunting, but the one thing I saw in your post that stuck out - the cure rate is high! Yeah!!!!

Have fun in Disney. Take it slow, sit in the shade of a palm tree, and just be.

 

[Allensfan]

Thanks everyone !! And for "hoping for a miracle" I will say prayers for you and your family!! Hard to believe you went in for a pulled muscle and found out this horrible news. My Dh went in for a check up and 15 min later he was on the way to the hospital. Just terrible how this stuff happens. But the good news is...both of you went to the doctor, thank God! That way you both can start getting better.

The first week of chemo was tough but we made it through. He was the only one there getting treatments that had to come everyday. His treatment course is common for testicular cancer, but very intense compared to other treatment courses even for more serious forms of cancer. He was there everyday for 6 hours per day. he gained 2 pounds per day from all the fluid and then they tried to get rid of some of the fluid and that made his kidneys cramp. It seems they have a drug to counter act every drug he is being given.

But all things being equal, he did great!! I am so proud of him. We were both exhausted, me from taking care of him, and our son, driving him to a from, and of course holding a full time job. And him from trying to deal with the chemo and other drugs.

I 'feel' that maybe we will be okay afterall at Disney. I think if he can make it through round 2 then we are on our way!! Then we return to round 3 and 4 which I think will be the toughest but with a little help from above, we should make it.

Margaret

 

[HopingforAMiracle]

Sorry, one more thing. Go to headcovers.com they have the best hats. The cozy hats were the bomb, very soft. I worked in them and even wore them to bed(your head gets cold at night so get a sleeping hat)

Thanks for the recommendation!
I've added headcovers to my favorites and will certainly be ordering a cozy hat or two (or three!) very soon!
That's great that your hair is coming back so well. I hope it does the same for me.
We bought an Annual Pass and so we're planning on returning to WDW again in September 2007. That would be nice if I have a head of hair by then- we'll see!

 

[HopingforAMiracle]

Thanks everyone !! And for "hoping for a miracle" I will say prayers for you and your family!! Hard to believe you went in for a pulled muscle and found out this horrible news. My Dh went in for a check up and 15 min later he was on the way to the hospital. Just terrible how this stuff happens. But the good news is...both of you went to the doctor, thank God! That way you both can start getting better.

The first week of chemo was tough but we made it through. He was the only one there getting treatments that had to come everyday. His treatment course is common for testicular cancer, but very intense compared to other treatment courses even for more serious forms of cancer. He was there everyday for 6 hours per day. he gained 2 pounds per day from all the fluid and then they tried to get rid of some of the fluid and that made his kidneys cramp. It seems they have a drug to counter act every drug he is being given.

But all things being equal, he did great!! I am so proud of him. We were both exhausted, me from taking care of him, and our son, driving him to a from, and of course holding a full time job. And him from trying to deal with the chemo and other drugs.

I 'feel' that maybe we will be okay afterall at Disney. I think if he can make it through round 2 then we are on our way!! Then we return to round 3 and 4 which I think will be the toughest but with a little help from above, we should make it.

Margaret

Hi Margaret~
Yes...what good news it is that we both went to the doctor!

That must be pretty intense- your husband's chemo treatments!
I'm just there for a few hours- once every two weeks.
My oncologist said that I have a high(er) chance of relapse because the mass in my chest is so large (almost 6 inches). After this round of chemo, I may need a more intensive Chemotherapy with a Stem Cell Transplant. UGH! The more aggressive Chemo that I'd need would require me to go every day for a few hours a day (don't know too many details yet).

I can only imagine how difficult that must have been for you, your husband and your family. It sounds like you've been so wonderful for your husband. It's great that he has you. My husband has also been so supportive for me and helpful.

I will be thinking and praying for you as well. You're due for your trip about a month before I'll be there.
Wishing you all the best!

 

[Allensfan]

That sounds very difficult, my heart goes out to you.

What kind of cancer is it? It sounds like breast cancer because you mentioned your chest, but I would never like to assume. Be as agressive as possible as early as possible.

We decided to keep our trip because it is right smack in the middle of his chemo and we thought it would give us something to look forward to.

Hugs to you and your family. You are in my prayers.

Margaret

 

[HopingforAMiracle]

HI Allensfan~
The cancer that I have is Hodgkin's. It's a cancer of the lymphatic system, so it is effecting muliple lymph nodes (only above the diaphragm, which makes mine Stage II as opposed to more advanced stages).

I have my local oncologist, but also consulted with a doctor at Memorial Sloan Kettering.

It seems that what I'm doing now is the protocol. It's the most aggressive I can be at this point.

It's Chemo (ABVD) once every two weeks. They always time the ABVD that way because the blood cell count is significantly effected, but should start improving within 2 weeks- so that's when they hit you again with another treatment. I couldn't do it any closer together (unless I had a Stem Cell Transplant, at which point they'd use even more aggressive Chemo- ICE).

It works out well with my treatments because I've only been nauseas the week after my treatment. I have treatment scheduled for Friday October 6, and then will be sick but not leaving for WDW until Saturday October 14- so I should feel great the week I'm there! My chemo's are on Fridays and I'll be getting back the day after my scheduled Chemo, but they'll be able to put the treatment off for this time for a day or two.

I'm hanging in there okay. I actually thought I'd feel worse than I do. As I said before, besides the fact that this may be a drawn out process, I'm a bit stressed about my hair. It's been my best physical attribute and always received comments on how nice my hair was. It's difficult to be losing it. I'll find a way to cope, though.

They cure rate is typically very high for Hodgkin's (85%). They told me I have a much higher chance of relapse because of the size of my mass, though. They wouldn't give me an actual cure "rate" for Hodgkin's of my size.

Good luck to you and your family!

 

[Allensfan]

Wow, I am learning so much about this...all of that information was interesting. And the good news is the cure rate seems really high!!!! Did you feel good for the most part before you found out you had it? My dh felt perfect.

It sounds like you should feel good while you are there. I am concerned about how my dh is going to feel but I am trying to stay positive. He will get one long week (30 hours of chemo), then the next week he will get chemo on Tuesday, then the 3rd week he will get chemo again on Tuesday, and then we leave for Disney that Saturday. So it will be 4 days since his last chemo treatment when we leave. But the great news is that he will get 1 week off of chemo and that will be the first week in 6 weeks that he has not had any treatment! It will be wonderful for him to be left alone for 7 days.

Sadly the day after we return, he will be back on the 30 hours of chemo again. But at least he will have good and happy memories to keep him company.

Please le me know how you are doing.

 

[HopingforAMiracle]

Allensfan~
I've been thinking of you.
I'm leaving a week from tomorrow. Feeling pretty well. I'll have my treatment on Monday this coming week instead of Wednesday. That way, I should feel fine by our travel day on Saturday.
How did your trip go? How is your DH doing?

 

[tiggrbaby]

Allensfan~
I've been thinking of you.
I'm leaving a week from tomorrow. Feeling pretty well. I'll have my treatment on Monday this coming week instead of Wednesday. That way, I should feel fine by our travel day on Saturday.
How did your trip go? How is your DH doing?

Just wanted to pop in...

My son was treated for stage IV A Hodgkins in 2001 - 2 at Sloan. The first phase of his treatment was BEACOPP, the second was ABVD, and the third was radiation. He was in eighth grade at the time. He is now a college freshman and was able to return to competitive swimming (YMCA National qualifier two years in a row). They can do so much now and keep you as healthy as possible while going through such grueling treatments. You can feel confident that you are in good hands. It sounds like you have a positive attitude, and that makes a big difference in the treatment.

Best wishes to both your families in your battles!

 

[tnkrbell]

My thoughts are with you all!! Please keep us informed with how you guys are recovering! PIXIE DUST********** coming your way!!!! (with a few prayers!! )

 

[HopingforAMiracle]

Just wanted to pop in...

My son was treated for stage IV A Hodgkins in 2001 - 2 at Sloan. The first phase of his treatment was BEACOPP, the second was ABVD, and the third was radiation. He was in eighth grade at the time. He is now a college freshman and was able to return to competitive swimming (YMCA National qualifier two years in a row). They can do so much now and keep you as healthy as possible while going through such grueling treatments. You can feel confident that you are in good hands. It sounds like you have a positive attitude, and that makes a big difference in the treatment.

Best wishes to both your families in your battles!

Thanks for your inspirational personal story! That is wonderful news to hear!
Here he was- Stage IV- and he now seems to be doing so exceptionally well.
I am really surprised about how well I feel- despite going through Chemotherapy. The first few days after I feel pretty yucky (even with the anti-nausea meds) , but I'm then pretty much back to normal (more or less).
I'm also thrilled that I haven't lost all my hair yet! The nurses are all surprised. I was told I'd lose it by the 2nd or 3rd treatment. My hair has thinned a lot. I can tell, but my friends/family swear that it's not noticable. I'm leaving for Disney in a week- I can't wait to go, and since I'm not bald yet, I'll love it even more!!! I guess I won't be losing my wig on TOT after all!

 

[tiggrbaby]

Thanks for your inspirational personal story! That is wonderful news to hear!
Here he was- Stage IV- and he now seems to be doing so exceptionally well.
I am really surprised about how well I feel- despite going through Chemotherapy. The first few days after I feel pretty yucky (even with the anti-nausea meds) , but I'm then pretty much back to normal (more or less).
I'm also thrilled that I haven't lost all my hair yet! The nurses are all surprised. I was told I'd lose it by the 2nd or 3rd treatment. My hair has thinned a lot. I can tell, but my friends/family swear that it's not noticable. I'm leaving for Disney in a week- I can't wait to go, and since I'm not bald yet, I'll love it even more!!! I guess I won't be losing my wig on TOT after all!

I think hair loss is different for each person with each treatment. For my son, it was a given as his first phase was quite heavy-duty, and he had light brown, straight, chlorine-damaged hair to start with. My father had chemo for colon cancer and never had hair loss (though we used to tease him that the bald spot he had when he started counted!) and the woman who hooked us up with the doctors at Sloan told us that her daughter (who was the same stage and treatment as you) only had thinning, no hair loss. She had thick, dark, luxurious hair to start with. So you may go without totally losing your hair. And it does come back! My son even lost his eyebrows and some of his eyelashes, and they are all back.

I, too, was amazed at how healthy they can keep a patient on chemo. I had visions of my son wasting away to nothing and it was quite the opposite: he actually swelled up due to the steroids! I am glad to hear that you are able to get back to (mostly) normal after a few days. That does so much for the mental part of healing. Don't get frustrated on the days that you can't do; remember that rest helps the body heal. And since I am sure you are the one who does it all most of the time, it won't hurt to let someone else take over!

 

[Allensfan]

Hello everyone so wonderful to hear from you. And I am glad you are handling chemo so well. My dh gets a lot more chemo than some other types of cancer. He goes 12 times a month so his hair is all gone and has been since about week 4.

Disney was nice, the scooter was a life saver and even though we did run into problems (DH got 5 blood clots in his jugular vein and up and down his arm from the port in his chest) the AKL put me in a taxi and I went to the pharam. and got him injections.

We just took one day at a time and did not push him. I hope you have a wonderful trip.

My dh starts chemo again tomorrow for 5 days in a row (6 hours a day) and tomorrow is his birthday...but I must say we still have happy outlooks and feel lucky!!!

My prayers are with you and your family...and I bet you (and your locks) are beautiful!! Treat yourself well and if you feel anything out of the norm...have the doctors number handy.

hugs...Maggie

 

[tiggrbaby]

Maggie:

Glad to hear that things went well for your husband in Disney (except the mediport!). It sounds like you have the positive outlook it takes to get through this.