Bleo Toxicity

**Chaps6** · 06-12-12, 09:36 AM

I am starting a new thread rather than updating my usual one. A brief summary. My husband Cory finished 4xBEP on May 29th. On June 1st he was admitted to the hospital due to breathing complications. He stayed a week and they did every test possible..Basically everything was ruled out (although, they never did get a lung biopsy because they couldn't control his breathing). They did however do a lavage wash during the 1st bronchoscopy and test came back negative. They just couldn't be certain that they were negative because they didn't get enough to sample. He was sent home with oxygen and 60mg prednisone daily. It has been 6 days since he's been home and his breathing has not become any better. He is on oxygen and gets worn out and out of breath just going to the bathroom. I am so afraid of pulmonary fibrosis. How long until we start seeing improvements from the prednisone. Not only that, but we are not even certain yet about his follow ups after chemo. In the hospital, 5 days post chemo, his HCG was 4.8!! That scares the hell out of me.

Any insight on bleo toxicity and when we could expect to see some improvements would be greatly appreciated.. I am trying to stay strong for Cory but I'm starting to have a hard time doing it since now I am starting to feel very discouraged about all of this,

**Mike'swife** · 06-12-12, 11:43 PM

Can't really offer any insight, but know how you feel.. It's definitely tough for the caregiver as well, it takes over your life. I eat breath TC, I try to stay busy with our girls and my husband and try to pretend I'm not stressed/worried/depressed out of my mind, but I'm a total mess inside, specially at work when they are not around. Xanax has been my friend at night or at work at times (people don't know how to act when they ask me about the status or are sometimes insensitive). My husband too has Bleo toxicity, but he only has the constant non-stop cough specially off steriod, he is on advair (don't notice a difference on cough, but he doesn't have shortness of breath) I myself have asthma and I start feeling better with prednisone within 2 days. Also my husband had his scans 2 weeks post chemo and he continues to have weekly tumor markers. Sorry long response, must be my anxiety.

**val** · 06-13-12, 07:00 AM

In the hospital, 5 days post chemo, his HCG was 4.8!! That scares the hell out of me.

Hi,

Just to let you know that my brothers was 4.5 at the end of chemo but it kept dropping and cant remember exact number but was 1.something four weeks later.

Hope the breathing improves soon.

Take care

**nciungan** · 06-13-12, 02:07 PM

<5 is considered normal range for HCG but it will probably continue to drop

**River Blue** · 06-18-12, 11:13 AM

Hi Debrah, did they figure out what was wrong with his lungs? I hope he is able to breathe more easily now!

Celeste

**carolynnec** · 06-28-12, 09:11 PM

My son has had 3 rounds of BEP but a recurrance 5 months after his tumor markers were normal, He has just finished his first autologus stem cell transplant 5 weeks ago and is slated to have a second one. His primary TC oncologist thinks he shouldn't have second transplant as his blood counts are struggling to come back. The transplant team feels that 2 transplants are better then one but his onc feels it may do more harm than good. First diagnosed with mets to spinal cord and lungs but he responded well to chemo..... what to do? Has anyone done only one stem cell transplant?

**Lovemyman** · 06-28-12, 09:39 PM

Pj had his transplant from October through December and his AFP just started to creep up with new activity on his Ct scan. No talk of another transplant. He is going to start Gem/Ox on Monday.

**carolynnec** · 06-29-12, 08:32 AM

Just wondering why 2 stem cell transplants weren't planned from the beginning. That seems to be the protocol in Toronto. They follow Einhorn's lead. My son's afp went up to 51 and the Dr said there was low level activity and stem cell transplants would have best chance of clearing it. Now his primary onc says too hard on him. His blood counts aren't recovering. Not too sure what to do if stem cell team wants to continue AFP is now at 5

**CancerSux** · 06-30-12, 11:25 AM

Carolynnec,

2 rounds of HDC are indeed statistically significantly better for the patient outcome as compared to one. For his counts though - did they harvest enough stem cells for 2 transplants? His counts shouldn't be 'returning to normal' per se, because they should have been infused.

If the only objection is your primary onc and the stem cell transplant team is set (and they would be taking your son's counts into consideration) to do the second, they should be followed.

If you need documentation (papers) regarding that 2 cycles are the protocol, I can link to them. If his transplant was 5 weeks ago, his second should have already been started. If there is anything we can do to help you, please let us know.

Tracy

**carolynnec** · 06-30-12, 12:19 PM

Hi tracy, yes they did take enough for 2 transplants and were to start second one in 6 weeks We are just about at the 6 week point. My daughter found a new study out of Germany that suggests 2 transplants may not be of a lot more benefit than one. Is anyone aware of any other stats. I believe Einhorn commented on this study but I can't find it. Big decisions ! Don't want to make the wrong one Thanks for your input Carolynne

**CancerSux** · 06-30-12, 02:23 PM

There are a number of studies and yes, the conclusion is that 2 transplants are better than 1. I am writing on the fly right now, but will grab some time tonight to send the links.

T

**CancerSux** · 06-30-12, 09:41 PM

I am looking, but coming up with little. I will be heading into work tomorrow anyway and know I have some papers there. But in the meantime, here is a link that actually argues the other point - that single and tandem transplants have the same disease-related outcome, but there are a number of caveats in this study, such as being retrospective rather than a clinical trial randomizing people, that patients were chosen to receive one or two transplants depending on their disease burden at relapse (so those with less disease, who are more likely to do better, received only a single transplant and did fine), which can bias the findings. The abstract can be found here.

I will add more tomorrow.

**carolynnec** · 06-30-12, 11:10 PM

Appreciate the info Tracy....will watch for anything else that you have. We see transplant team on Wed so will know more then as to what next steps will be Carolynne

**CancerSux** · 07-01-12, 09:23 PM

I found the paper I was looking for - it summarizes a lot of the data with HDCT, including in table 1. The German experience is with 1 cycle, whereas the others are with 2.

Ok, anyone help here? I have a pdf I want to upload but it doesn't like me - any thought? Otherwise, Carolynn, send me a PM and I will email it to you.

Tracy

**carolynnec** · 07-02-12, 05:50 PM

Originally Posted by CancerSux

I found the paper I was looking for - it summarizes a lot of the data with HDCT, including in table 1. The German experience is with 1 cycle, whereas the others are with 2.

Ok, anyone help here? I have a pdf I want to upload but it doesn't like me - any thought? Otherwise, Carolynn, send me a PM and I will email it to you.

Tracy

Sorry Tracy....don't know what a pm is so sending my email address Guess I don't have to tell you I am not that versed in computerese Thanks for your help xxxxx (removed by Tracy for safety) is our address

**Davepet** · 07-03-12, 02:10 AM

Originally Posted by carolynnec

Sorry Tracy....don't know what a pm is so sending my email address Guess I don't have to tell you I am not that versed in computerese Thanks for your help xxxxx (removed by Tracy for safety) is our address

A PM is a Private Message that only you & the person you send it to can see. If you click on anyone's name at the beginning of any post, you will see an option to PM that person.It is useful to send info that you would prefer was not made public.

Hope that helps,
Dave