Husband just diagnosed - need some help

[Jilleighn]

Thanks for asking Trisha. My husband is doing amazing. He hits 2 years remission on Nov 8th! I am extremely excited and can not wait to celerbrate. The most shocking for me during treatment for me is how quickly Eric's white blood cells dropped. He was in the mist of his first ground and his blood cells dropped that they placed him in the hospital. He also lost his hair quickly to treatment. We made a promise to each other that we would not let it fall out in chunks but would shave it. As for the weight, it did not matter what I fed him or what ever I got him to eat he would just not hold ANYTHING down. He was very ill. My husbands Chemo meds where Cisplatin, VP-16 and Bleomycin.

[Trisha]

Pre-existing Kidney Disorder - worried about chemo

So we had our first onocologist visit and thanks to everything I have learned from this group and other sites there was no real surprises and that made it easier.

It appears (as many of you have said) that based on his nonseminoma and pT2 with VI and LI he will need to do something (chemo or RPLND or both). We are now awaiting his CT results due Monday.

I am really upset that the urologist did not take his blood markers the day of his surgery for a good baseline. In fact the blood was last checked one week before surgery. So it will be hard to tell if they are headed down since they may have risen during that week.

One thing I am worried about and looking for more information about is what his pre-existing kidney disorder will mean with the chemo (or surgery). He has IgA neprhopathy which is:
kidney disorder caused by deposits of the protein immunoglobulin A (IgA) inside the glomeruli (filters) within the kidney. These glomeruli (the singular form is glomerulus) normally filter wastes and excess water from the blood and send them to the bladder as urine. The IgA protein prevents this filtering process, leading to blood and protein in the urine and swelling in the hands and feet. This chronic kidney disease may progress over a period of 10 to 20 years. If this disorder leads to end-stage renal disease, the patient must go on dialysis or receive a kidney transplant.

They would not even give him the contrast injection to make the CT Scan easier to read because it is processed through the kidney. Does anyone have any info or resources about this issue?

thanks again for all your support you have really made a difference in our lives!

[Marco1975]

about gaining weight....

Before 3xBEP: 192 cm per 73 kg.
After: 192 cm (yep, didn't shrink!!) per 95 kg.

Mum and girfriend (now wife) fed me well during and especially before treatment.

As for the side effects of chemo, i suggest to talk with the doctors. during first week of treatment i was very ill but i thought that was the price to pay to be cured... then i talked to my oncologist, told me how bad i had been and he mixed drugs, gave me more pills and a few injections to fight the side effects. guess what?during second and third week of treatment i was feeling much, much better!

[Trisha]

Thanks! To our fist oncology apponintment today - and our CT Scan later today. I feel more prepared for all of this thanks to all of you

[DianeE]

Hi Trisha,

The chemo is no walk in the park, but it's something that so many
people get through. I remember when my son was in consultation
with the surgeon who was going to do his RPLND and my husband
and I were in the waiting room. The room was full of people who
were obviously chemo patients. One of them was a spunky lady
who I would guess was in her mid 60's. She was bouncing around
chatting with a few other folks and suddenly looked at her watch
and said, "Oops, I gotta go and get my chemo!!" She said it as
if she was going to a hair appointment!

When we were told after Brian's RPLND that HE would need chemo,
I was afraid of the whole chemo thing, but when I thought about
that woman's casual attitude, I decided it can't be as horrible as I was imagining.

Everyone reacts differently. If your husband does end up needing
chemo, read some of the threads from the guys who have gone
through it and what helped them with the side effects. A lot of the
guys actually gained weight during chemo! And most of the guys do
bounce back within days after finishing the last round. My son
only had to do two rounds, and was pretty much wiped out after
the second one, but within a few days of getting liquids and resting,
he was back to his normal self again.

Keep us updated.

Diane

[Trisha]

Jilleighn - how is your husband now... did he bounce back and gain weight back after chemo?

[Jilleighn]

my husband did chemo and it was 3 rounds worth. Everyone reacts different to Chemo. His first round was not to bad and it only got worse. My husband all together lost 56lbs in 3 months becuase he could not keep anything down. He also did not need to have lympth nodes removed.

[Trisha]

Thank you!

You guys have been so wonderful and it means a great deal to my family and I . We cannot thank you enough. It is so helpful to be able to ask these questions. Many thanks

[dadmo]

Trisha:
I just wanted you to know that you're doing a great job and asking all the right questions. You're husband should be very proud. It's this type of research that saves lives.
I just want to add one thing about the RPLND. If he has enlarged lymph nodes and at the end of chemo they are still enlarged there is a great chance that it's nothing but dead cancer cells but they can't know that without removing the nodes.

[Scott]

The most complete way to answer that is to refer you to the NCCN practice guidelines and this TCRC page.

Why did I say point 4 was a misinterpretation? Two reasons:

1. RPLND would be the wrong choice with persistent tumor markers.
2. RPLND is often a good choice even if the CT scan shows some metastasis to lymph nodes.

[Trisha]

Thanks Scott... so when would RNDLP be considered for someone with nonseminoma with the embryonal carcinoma as the largest portion of a mixed cellt tumor? or is it not normally part of the answer? Can't wait to see the dr. Thanks for all you help - this is tremendously helpful!

[Scott]

Trisha, I think you've got it all right, except that last point about RPLND.

[Trisha]

thanks guys - I appreciate all the kind thoughts.

Scott - I saw an old post of yours that said:
".. based on this information from Doug Bank of the TCRC: "The experts feel that if this type of tumor [embryonal carcinoma] spreads, it has a good chance of spreading to the lungs. An RPLND would not prevent such a spread, so they feel that surveillance is the best way to ensure that you only get treatment if you actually need it, and if you do need it, it is better to get chemo alone as opposed to RPLND and chemo.""
If my husband's tumor is mixed germ and the largest part is embryonal carcinoma is this still true? We have vascular invasion so if I understand the norm it would go like this:
1. Wait for new blood tests 4 weeks past I/O
2. Check CT Scan
2. If blood test go down and CT/x-ray is clear than the recommendation is surveillance
3. If blood tests dont go down it would be chemo
4. RPLND would not be advised unless blood tests are up and ct is clear.
Does that all make sense.
Thanks!

[Mom]

Interestingly enough, one of our employees is 8 weeks pregnant. She was so nauseous and was vomiting so much that she lost five pounds in three days and became dehydrated to the point that she had to be hospitalized with an IV for 24 hours. She came in to work and I asked how she was doing. She said her doctor gave her some great stuff. It was Zofran, the same drug my son took and most of the guys on this forum have taken while under chemo. I guess you can equate morning sickness to going through chemo. Not fun, but a baby and a cure are worth it. Hang in there. Dianne

[Hopeful]

Everyone reacts differently to chemo. My husband went through 4 rounds of BEP for two tiny, tiny tumors in his lungs. His major side effect was coughing, exhaustion and mouth sores. But other people have have very minimal side effects. the only advice I have , if he has to go through chemo, is to stay on top of the drugs they give you and if you notice anything minor, tell the doctor. They have great drugs to help with side effects.

Like Dadmo said, TC has a very amazing cure rate. so hang in there. And if you need anything, just holler. That's what we're here for.

Patti