Hi all,
We're heading back down the chemo road, as John's tumors are raging and making his breathing a problem. The new immunotherapy trial we thought he was starting will not be possible until they get the tumors shrunken some. His docs want to do an agressive 3 drug punch to kick the growth's a**, which is good with us. I am just wondering what severity of nasty side effects we are in for this time -- will meet with the MO tomorrow to find out details. Scared and anxious. J did get some Xanax, which is a BIG help for him. Think I might pilfer a couple to ease my mind as well occasionally.
This just doesn't seem real.

Best of luck to you and John with this trial treatment.. I hope it works well for him..

In my prayers..

Nicki

Thank you Nicki.
Prayers to you as well.

Hi there - saying prayers for you both! Hoping the side effects will be minimal... Bonnie - this disease is hell.... Sending healing vibes to you and your hubby!

Hi Bonnie, hope you have explored other options like Taxane + Carboplatin + Fluorouracil. John might have already received Cisplatin with IMRT hence his MO is exploring other options including clinical trial.

While your MO is the best judge, Clinical Trial should be always last option in my opinion. And, even if it is a clinical trial, ask which phase it is in and how have been results of previous phases.

If you intend to go with clinical trial, do check for Reolysin with Paclitaxel and Carboplatin.

My prayers are with you and John. May god give you right directions.

I had 3 rounds of chemo induction with Cisplatin, 5-FU and Taxotere in the hopes that it would take care of the tumor(s)in my neck and that I wouldn't need the neck dissection. Day one of the treatment, I was at the doctor's office all day on an IV and then they sent me home with a portable unit that I wore for 5 days. I had two weeks off in between each treatment. The treatment totally worked and the lump in my neck was gone after the 1st round of treatment. Luckily, the only side effect I had was losing my hair. Not one bit of nausea or vomiting!

My thoughts and prayers are with you!

Cathi

@Eshwar, our MO is going with Ifosfamide/Paclitaxel/Carboplatin. He did have Carbo/Taxol with the first round of treatment last year, but these doses are much higher I'm sure.
@Cathi, he wasn't open to doing the 5-FU, too harsh with his condition/breathing prob. Taking Prednisone and it's helping a bit with breathing.
Said he will have antibiotic as well as Neulasta for WBC boost. I am most scared of an infection from the depeleted blood levels and what that may develop into.

Of course John's MO gave us the option of doing nothing as well, which he said may or may not give him as much time as doing another round of chemo. Well we are not quitters, and John is not going to give up without a fight!

Our son is to be married in Feb. 2012 -- daughter is in Chiropractic College -- there is WAY too much to be done and lived yet!!!

Crossed fingers for you, love the fighting spirit!!

My Alex had the same regimen as Cathi so may not be relevant to your question but will tell you just in case it is useful. In addition to the hair loss, Alex suffered a small amount of nausea, large amount of fatigue, and foaming phlegm (can't describe it any better). We attributed all but the hair loss to 5FU but our docs thought it was the platinum drug cisplatin(carboplatin is the same family). Like your John, my Alex is young (51 at diagnosis) and handled the side effects extremely well. He was ok for the first few days then about 6 days in, started feeling awful. This lasted for a week or less and then he felt better - almost normal by the next cycle. The thing that kept him going was the knowledge after the first cycle that there was one bad week during the three. I had to keep notes though and remind him as he could never remember and I would keep telling him "you will be feeling better by Tuesday, just 2 more days to go..." etc

I have no knowledge or experience with ifosfamide so can make no comment about it.

By the way the National Comprehensive Cancer Network (NCCN) which is an alliance of 21 of the world leaders in the treatment of cancer and who are responsible for writing the guidelines used by healthcare professionals in the US state:

"NCCN believes that the best management of any cancer patient is in a clinical trial. Participation in clinical trials is especially encouraged".

oh, and one other thing, Alex also had an injection that boosted his immune system which may have been Neulasta or something similar. This was administered on first and second cycles to off set the chemo side effect of reducing his WBC. He complained that his "bones ached" and it may have contributed to his severe fatigue too. Regular over the counter pain killers helped.

Bonnie,

This is called TIC regimen (Taxane, Ifosfamide and Carboplatin), old but yes has been superior in recurrent setting with improved outcomes and acceptable toxicity. Given in 3 days and repeated on day 21, with response assessed by CT/MRI after second cycle.

Broad spectrum antibiotics will take care of infection. Neulasta will revert the levels much before the next cycle.

Just take good care of John after 7-14 days following the chemo that is when his blood levels will be absolutely low.

My dad went through 3 cycles of DCF regimen much similar TIC and I was also worried about infection but he went through without much problems (except for mouth sores because of which he could not eat much). He also complained about nausea and stomach acidity.

My dad had Pegex (same as Neulasta) and yes it does cause bone pain.

So do talk to your MO about side effects. All the best to John and you - hoping for a positive news after his second cycle.