Got bad news today.. Going out of my mind.

[jezook]

Was hoping that I would be reporting that Kevin got his first all clear results today..but it has moved to his lungs. Saw the doctor today, had his tumor markers checked and cat scan. Markers came back 526 and cat scan showed spot on his lung. Don't know that many details. Pretty sure dr said it is 3 cm. His approach is that kevin is being admitted monday thru friday for inpatient chemo and will do out patient after. Haven't met his oncologist. Will do that monday when we go in. I got this phone call at ten minutes till 5 when i was driving. Not the best timing, but did make it home safely. So far kevin had the I/O in november was classified Stage I non seminoma T2. Had the RPLND done in january. 43 lymph nodes removed. All of the left side removed and half the right and they came back cancer free. So this is where we are. Any advice or suggestions will be great. We are being treated at the cleveland clinc in cleveland, ohio. Sorry if some of this doesn't make sense. Its been a rough night.

[Scott]

It all makes sense. I'm very sorry that Kevin needs more treatment. There's a lot of good advice posted from those who have come through chemotherapy. Hang in there.

[Aegean]

No worries Jez. EC travels easily through the blood system and so the RPLND is not always curative. It won't be a walk in the park, but the chemo (3xBEP or 4xEP) should knock this thing out for good.

[DianeE]

It's a bummer, but has happened to others who have had clear RPLND results only to relapse later. I don't know what his pathology was, but I'm guessing there was some
EC in there, which as you know by now can skip the lymph nodes and show up later in the lungs. It's scary to hear cancer in the lung, but remember, it's still TC, and is highly sensitive to chemo.

I remember feeling so elated after my son's RPLND, and then feeling such disappointment when the pathology of the nodes indicated he had to go through chemo, but it was needed and it was a cure.

It's good Kevin will be in patient for the first round. They will keep him hydrated and address any little problems that may arise. Do you know if he's getting 3xBEP or 4x EP? Either is a cure

Hang in there!! It will come and go before you know it.

Diane

[Kurt]

This time last year I was about to start 3xBEP as my cancer had spread to the lymph nodes and lungs, where 3 tumors were growing.

BEP quickly sorted the tumors out and it will do for your son. Chemo isnt nice but it is bearable with a good diet, plenty of water and following the advice of the nurses.

If possible, I would also suggest that your son stays away from large crowds just incase he picks up an infection of some sort. However, I do appreciate that this is not always possible.

Anyhow, best of luck with everything. It will be fine.

[dadmo]

My son had it spread to his lungs and 4xEP cleaned him right up. Hang in there he'll beat this.

[jezook]

Kurt Kevin is actually my husband, don't think i mentioned that in my first post. About the germs, I'm very worried about that because we have two small children. A 8yr old son and a 14 month daughter. Thank goodness our son is out of school for the summer and our daughter does not go to daycare. But here is a question i just thought of, How is it chosen which chemo he will get (3 x BEP or 4 x EP) is one better than the other? or is one easier on you than the other? Sorry just random questions.

[Davepet]

The "B" in BEP stands for Bleomycin. Bleo can be hard on the lungs (permanently)so athletes often opt to avoid it (Lance Armstrong did). The cure rate between 3xBEP & 4xEP is close to identical, but 4xBEP takes longer to complete, so many folks prefer 3xBEP.

Most folks do not experience permanent lung damage from bleo, but there is a chance, so each guy needs to make that decision for themselves.

Dave

[mahalomom]

Jeezook,

Another reason 4xEP may be chosen by the oncologist may be that there is already alot of spots on the lung, as my son did.

Your husband will get through this. Make sure he drinks lots of water, takes his anti-nausea meds daily before his chemo, keeps away from anyone that is sick. My son also rinsed after every teeth brushing, with tea tree mouth wash. This helps in avoiding chemo mouth sores.

We're here to help.

Mary Ann

[Smartie]

Hi.

I'm sorry to hear your family is facing this. I had 3xBEP in 2002. Waiting for chemo to start was a weird time (especially with Christmas in between), but the first few days of chemo were fine. Almost an anticlimax. There were, of course, times when I had complications and felt terrible, but there were other times during the treatment when I felt almost normal and went out doing normal stuff like taking the kids to school. There will be some tough times, but you and Kevin will get through it. As a bonus, many people feel they have a new perspective on life when they've finished.

Whether it's 4xEP or 3xBEP often depends on what your hospital prefers. Each has an equally good outcome. with BEP you have a week of chemo followed by a quick one hour infusion on the following two weeks. With EP you have a similar week of chemo, but don't have the weekly bleo. Plus with EP, you have the extra round, so the overall time from starting chemo to finishing is longer (by three weeks).

So basically, with EP you you gain the fact that you don't have the weekly infusion, but trade that off against having the extra round.

I wish you the best for the coming weeks of chemo. You may find, as I did, that the weeks go quite quickly and you're soon looking forward to it all being over. In the meantime, we'll do anything we can to help.

[jezook]

With the bep how does it effect that kevin is a smoker. I know after monday he won't be. But I'm assuming that it would harder on him.

[Smartie]

It's possible that the lung toxicity associated with bleomycin would be a little worse for a smoker with lung mets. Overall, it's usually not a massive concern if he is otherwise in good health. It would be worth asking you oncologist about this.

[TCdoc]

Hi,

I wouldn't get too concerned whether your husband gets BEP or EP as there is little if anything to choose between them from a cure point of view. EP is usually first choice to spare the lungs eg age over 40 (like me who had EP), or want to continue pastimes like scuba diving etc. As Nick said there is an extra round with EP but you do have two totally free weeks between cycles to recover and feel "normal" before it all starts again. Psychologically I am happy I did EP (just finished last cycle) rather than BEP for this reason.

You mentioned that you had small children? Both BEP and EP affect the bone marrow and can lead to low neutrophils with a risk of infection. Normally they check this before each cycle. Not everyone gets a significant drop but cycles can sometimes be deferred a week if low or be given stimulant injections before the next cycle. I kept away from everybody during my first cycle until the check then found I had gone neutropenic. This set the scene for all my remaining cycles. Knowing that (retrospectively after the first cycle) I've avoided anyone who might give me any infection and been extra careful with food and hygiene. My wife teaches music at home and has made sure that none of the children come for a lesson if they have a cough/cold/recent vomiting or diarrhoea.

[janine]

Just want to say, Dr Einhorn prefers the 3XBEP if pulmonary function test results are okay, even for a smoker...he thinks the possibility of lung damage has been exaggerated. My son is a smoker and did the 3XBEP with no problem, but quit smoking (mostly!). Since Einhorn pioneered this treatment, I give his advice great weight. You can check with him via e-mail; or your doctor can check. It's just amazing how available he is, and how responsive!

I think the idea is to hit the cancer with several different types of chemo drugs all at once for best results, and also reduce the different types of negative side effects of each component of the chemo by reducing the amount of each type that you get (only 3 weeks of cisplatin/etoposide as opposed to 4).

[AZRider]

With the bep how does it effect that kevin is a smoker. I know after monday he won't be. But I'm assuming that it would harder on him.

they pulled me off bleo because of blood clots in the lungs. that was caused by me smoking well on treatment according to my doc. got me to quite but now im on 4xep not to bad eather way you go. I'd go with what the doc recomends and they can change it if they have too

[TCdoc]

Although Dr E may have pioneered BEP there are now over 30 years of clinical trials to show that 3xBEP and 4xEP are equivalent.

[Already Bald]

Have the docs suggested a needld biopsy of the lung tumor in order to confirn mixed germ cell?
He will be sure to be cured by 4XEP or 3XBEP.

[jezook]

So is it normal that kevin is being admitted for the first week of his chemo?

[Davepet]

That seems to depend on where you live. I did my 9 weeks on an outpatient basis, but others seem to get admitted.

Dave

[TCdoc]

I wouldn't read anything sinister into Kevin being admitted for his first cycle. In the UK everyone is pretty well admitted for chemo as standard. Being admitted for his first cycle means he is likely to be better monitored and looked after which lets you sleep easier.

[jezook]

Any suggestions of what I should pack to go the hospital? Will he be on any special diet while he is in the hospital?

[Smartie]

Some people on the forum have stuck to particular diets when on chemo. However, the chemo makes things taste weird and can suppress your appetite, so my advice would be that he should eat whatever he can manage, and not limit himself by trying to stick to a predetermined regime.

Pack stuff to keep him occupied. I personally found my brain was too fuzzy to concentrate on reading books, but magazines, video games (if he is interested in that) and a laptop is a good idea.

Also, it's worth having a mouthwash for him to use to prevent mouth sores and to help avid infections.

[AZRider]

Any suggestions of what I should pack to go the hospital? Will he be on any special diet while he is in the hospital?

this is what the nurses told me about diet. the first nurse gave me a stricked diet of the food pyramid. "yeah didn't work out so much." every nurse sense then told me if it sounds good eat it. my big thing have been chocolate snack packs, and ice cream. no matter how bad things sound or taste they seem to go down and not come back up. chocolate milk how ever seems to always come back up. but it also seems to help with chemo heart burn when meds are not working. as for the funny chemo metallic taste I have found root beer and cream soda fight that off really nicely. how ever be aware that this could ruin root beer and cream soda. as I have learned coming out of round three and now need to find some new drinks for the final round. Listerine strips are strong but if you really want a moment of flavor they fight through the metallic taste too. discovered that one during round 3 with help of a new nurse at the ward. now I can't get enough of them they have flavor that taste like they are meant too. If smoking is involved and quiting on chemo is going to happen. plain on switching up gum flavors or use the patch. thats all I'm going to say about that. if you'd like to know more feel free to pm me. I have tryed some crazythings to keep smoking away during chemo. basically if he can keep it down let him eat it there is nothing wrong with ice cream and pudding. in fact my nurses support it 100%. witch really bugs my girlfriend second round of chemo red meat didn't agree with me but chicken tenders form burger king ruled. just some ideas that worked well for me. one thing I will say that everyone says on here is DRINK DRINK DRINK keep fluids in your system it dose help. I personally have found that if I have a bowl a cereal at 8am have chemo at 9am by 11am I'm ready for lunch. even if I don't feel up to eating it seems to make the day a little easier if i can keep something down. one final note keep strong scents away from him while on chemo. I can not tell you how many times I have lost my dinner between the scents at walmart and my girlfriend getting ready for her day. I am a big smell person I love nice scents but on chemo even the scents that remind me of home can be way to much for my body. sorry about all the rumbling just thought I'd through out somethings to think about. hope it helps. god bless and may treatment be unevenfull and dull for you both

[TCdoc]

Any suggestions of what I should pack to go the hospital? Will he be on any special diet while he is in the hospital?

Everyone varies in their response to chemo and each cycle throws up new challenges. You may have to deal with things on a day to day basis. As Nick said it affects concentration (I could watch dvds for the first two days only, by the end of the cycle I just lay on the bed all day). As Brian said food preferences vary a lot. However, expect:

Boredom - around 6 hours a day tied to a chair with an iv
Frequent small amounts of food required - snacks etc
Stomach problems are common - zantac came highly recommended in a recent thread
Constipation from the antiemetics

Remember that Kevin will be joining a long line of us who have been through chemo and, although it isn't pleasant, we are all still here to tell the tale. After a few months it will be over and life returns to normal.

[Davepet]

Any suggestions of what I should pack to go the hospital? Will he be on any special diet while he is in the hospital?

What to pack would depend on his interests. As an outpatient, I read 4 or 5 books during my chemo sessions. I didn't have any problems concentrating, when I felt sleepy, I just put the book down & napped. Had I been in a hospital 24/7, I'd have brought my laptop. Some folks like blankets & pillows from home, I never saw any point in that.

Once he starts treatment, he'll have a better idea about what he wants with him & you can bring it to him the next day. Everything that is absolutely necessary will be provided, so don't sweat it.

Dave