some chemo questions

[shelly]

Scott has started his chemo treatments. Monday was the first day. The latest CT scan shows nothing larger than the last, could possibly be slightly smaller than the last, less prominent. They are still not sure if the lymph node is anything to worry about. They said if it shrinks from the chemo, then we will know. Right now, it is looking like only 2 rounds will be needed. THAT will be the best news we can hope for now.

So far, Scott has had no problems, or side effects. Except the first night he was up until 4, full of energy and ready to clean the pool! This from a man who is usually in bed by 10. The steroids had him all pumped up, and raised his sugar sky high as well. They will be adjusting his diabetes meds to help with this.

My questions are these. Has anyone ever made it through two rounds of BEP with relatively few side effects, able to work, function normally? We thought he would be able to work on his off weeks, but talking with the doctors and nurses yesterday, they said he will most likely be unable to work, tired all the time the next few weeks. I was under the impression the "off" weeks he would feel better. Thinking he is going to be unable to work for 8 weeks has us both feeling a little uneasy. The doc said play it by ear, he may be able to work "some", depending on how he feels. I'm just wondering if chemo affects everyone the same, at some point. Or is it possible to get through with little or no problems?

Shelly

[Margaret]

Hi Shelly,

My husband Boyce had 4 rounds of BEP and he was able to work up until the very end. The first two rounds, he would work with his lap top from the cancer center, and then go into the office when he was not getting treatment. He was more tired than before, and sometimes he would have to come home early from work and he did take naps. His sleeping was off because at times he would have lots of engery from the drugs and then crash and sleep for 12 hours. Even in the 3rd round he was going into the office on a regular basis. During the 4th round, he would go into the office, but only for a couple hours at a time. He was pretty worn out. Everyone is different, but we were happily surprised at how semi-normal we were able to keep our lives during the off days. I hope this helps and best of luck to you and your hubby. If you need anyone to talk to, let me know and I will be happy to give our numbers to you and your husband. My husband spoke to a man who had just finished chemo and it was the best call he ever made. Really eased a lot of his fears.

Hugs,

Margaret

[petep]

shelly, I do not want to raise a subject...

but if he showed lymph node activity, that would mean 3xBEP....

2xBEP is usually done post orch., when there is no invasion and no lymph node enlargement, as a preventative measure.

You may have other posts, and I may not be up to speed on your boyfriends pathology...but I read lymph node enlargements, and then he started 2xBEP and I wanted to write...

All my markers were normal after 2 rounds..but I showed enlarged lymph nodes and the protocol is 3 rounds BEP or 4xEP

just some info... there is a link on the site with the standard protocols.

pete

[petep]

Shelly,

I think many people can thru with no major issues...one of the biggest risks is low white blood counts - low ability to fight infection....that is one reason someone may stay away from others...

beyond that, you get tired, and may need to rest...the meds today really alleviate the nausea....

as a side....

I wrote the above post at 1am last night/morning after working all day...I hope I did not scare you...I just could not tell if he started 2xBEP as a preventative measure post orchiectomy, or if he was on surveillance and showed lymph node activity...and the docs then started the chemo...

in my case, all markers were back to normal at the start of my 2nd round...but because I was on surveillance and had a recurrence in the lymph node, the protocol called for 3xBEP....even if all was normal after 2 rounds.

I just wanted to err on the side of caution, that's why I wrote...better for me to raise it, than not say anything...but again, my apologies if I scared you.

pete

[shelly]

Pete,

Thank you for your apology, but it was not necessary. Basically, we are in a very difficult situation as we do not know exactly what the circumstances are. Scott has had one lymph node that was "questionable" since his first CT scan after his I/O. There is nothing definitive they can see. He was originally opting for RPLND, but the surgeon told him he could not do the surgery based on the results of the CT scan. When we met with the oncologist, he told us there is no way to be sure that there are cancer cells present. His original pathology showed vascular invasion. He has no elevated markers, has not had any since the I/O. No increase in any lymph nodes since the first CT back in February.

So his oncologist is opting for 2 rounds, and another CT scan to see if the lymph node decreases in size. He said if it doesn't, then there was no presence of cancer. If it does, then we will know and may have to go to three rounds. That's where we are, and I really just wish there was a way to actually know for sure what we are dealing with.

We were given the option of a PET scan, which the oncologist said could give a false negative, in which case, we would be having the same treatment. Seemed to us a very expensive procedure that would not change the treatment either way. Positive, we proceed with chemo, negative, we also proceed incase it's a false negative. I hate to think that he is going through this for no reason.

Day four of treatment today, and things are still looking very good. No real side effects so far. Scott did mention he is getting the bad taste...his beloved diet coke is not tasting so very good to him today.

From my standpoint, I do believe this is the hardest thing I have ever gone through. To sit here and watch someone you love go through this, waiting for his health to start failing...wondering how much longer until he comes out of the bathroom holding clumps of his hair, trying to make sure I know everything I possibly can, even more than the doctors, so I can make sure even they are doing the right thing. Knowing that there is really nothing I can do to help other than sit there. Worrying about money, working all day, then rushing to get to his chemo treatment, trying to keep up with everything else in life as well.

I think there should be some good drugs handed out to the care givers to help US through this ordeal!
Just kidding, but really!

Shelly

[petep]

I do not know if this will make you feel better - but my sense is that it was substantially harder on my wife than me...she was watching, I was in the game...so however you feel...it's not that bad for him.

hair - no worries - it's just hair...it'll come back...based on your posts, his pathology, early detection...this is something that you will get through.

Having been through this...and now back on surveillance, it is an experience that my wife and I would never give back.

I never ever would have though that...but you are being pushed right now to your limits, physically and emotionally...when you are done, there is an inflection point...the point where you start to get it back together...his hair will come back, strength will come back...and it is the most powerful feeling to come back out.

I have another post - do a search on chemo tips & tricks...or look at my prior posts...if he manages the side effects he will be fine...chemo is cumulative...so it does get a bit harder...but easily managed.

Trust me that 6 months from now, you and scott will be much closer and you will navigate life's tiny little challenges much differently....and you'll be on this board telling others what I am telling you now.

all the best,

pete

[boyce]

I don't miss Diet Coke

I was a heavy user of Diet Coke pre-chemo and have not had one since I finished chemo. My taste buds chanegd to the point that I knew I was drinking soda but I had no idea what kind of soda I was drinking. Post RPLND I hooked into apple juice, which I hadn't had in 20 years and now I drink it very day. My soda consumption is way down, but how ba can that be, right?

have him eat often and eat whatever sounds good. Mt BEP was 4 rounds and I worked easily through the first 2, except the steroids kept me up at night.

We are all rooting for both of you,a nd please ask anything at all. It's a tough, tough road, but it is much easier with a great co-pilot. I had one and you are one. Bless you!

[shelly]

Last day of round one. Still no major problems. Except I think this week has emotionally taxed both of us, more than we ever expected. I am a constant yo-yo of emotions. My particular situation is most difficult, as Scott and I work together, and live together. I have had to take on more hours and more actual work with his absence. Also trying to be there for him, stay happy and supportive. I am exhausted. I want him to come to work so he can help me and so he gets a paycheck, as I cannot really afford to support him for the next 8 weeks. But I want him to stay home and rest so he doesn't get sick, and end up in the hospital, which would be an even greater strain.

I dragged myself to the cancer center today for the end of his first cycle, which should have been a great occasion, but we ended up having a petty silent argument over magazines, of all things. He was quite snippy with me, and I gotta say, it really rubbed me the wrong way. I want to say how dare you, with everything I am doing for you, how dare you give me an attitude over a magazine! I am going through all of this right along with you. I may not be in that chair, but I am here every day, and I am working every day, and I am paying for things for you, and bringing you snacks, and boosting your spirits, and I am EXHAUSTED.

Everyone takes care of him, and asks how he's doing, and I am here carrying just as much burden, and no one asks how I am holding up. I am not the patient. I am just the person who is taking care of EVERYTHING. I have to keep it all to myself as people at work do not and cannot know of our relationship. And as I have these thoughts and feelings, I instantly feel GUILTY on top of everything else for even thinking like that. I know it is not his fault, and I know he cannot do anything about it.

But this week, he felt fine, and I kept telling him he should work for a few hours in the morning so that he can make some money while he is feeling so good. Next week, who knows , the following weeks, who knows...maybe he won't be able to. So he could work to help me out while he is able to. And I can't say any of this to him, because what an awful person I am to say those things to someone who is going through what he is going through. I feel terrible saying here, but where else? If I don't get rid of it, I will carry it, so maybe this will help me let it go. So I can focus on what is most important, getting through this and getting him well.

Thanks to everyone for this website. Don't know where I'd be without it.

Shelly

[petep]

greatest post I've read shelly....

you have to call my wife....pm me, I'll give you her number....the two of you will hit it off....

I read this post and I thought I was re-listening to her....the kids, the dog, the house....

the simple truth is, the patient and the caregiver share the burden...and no one really appreciates the caregiver...like a stay at home mom...the single most important job in society...the least recognized.

pete

[kollerjones]

Shelly,

Your post actually made me giggle as I've been in the same position - still in it as a matter of fact! I just came in from scraping the garage (badly needs painted), cleaning out the gutters, and trying to figure out how I'm going to salvage what's left of the garage roof while my husband was chit chatting with the neighbors on the porch. He thought it was rude of me not to sit down with them so he went over their house. I wasn't laughing then, but I am now. I caught a good look at myself in the mirror as I stuck the kids in the bathtub. (I'm listening to them banter while I type.) And I look exhausted! Hair sticking up and full of paint chips, dirt smeared across my face, mascara running from squinting in the sun, and.. I do believe that I smell! I thought to myself "I run an art museum for God's sake!" lol

It is ok to feel to feel the way you do. And I think over time it is ok to tell your boyfriend how you feel. Find the right moment, tell him you love him, and tell him you are exhausted. For a long time I was silent, for the same reasons, but silence has a way of wedging itself between you and your loved one if its not broken. I finally had to tell my husband how I feel to rid myself of the anger - and the guilt of the anger. He, in turn, became more understanding and lost a good bit of the indifference he had been hiding behind because he couldn't do things. My being "superwoman" only reminded him he was not superman. Ego thing, I guess. Even in our current situation, I will still occasionally remind him that this is not easy for me either. That admission to him is an expression of the fact that he is not alone in this and that I care.

Now on the other hand, once these things are said, you will likely still have to suck it up and continue bearing the burden. You will get better at doing this over time and become a stronger person along the way. Start reworking the finances (check into disability - it's never too early to do this in my mind), decide what is and wht is not important to get done (yes, my house is much less clean than I like), and keep in touch with groups like this to vent and seek support. Having someone to talk to who knows exactly what you are going through is invaluable. When kindnesses come your way - from family, co-workers, and friends - don't turn it away - take them, too. You will need a break so as not to lose yourself and to remember why you are doing this in the first place - because you love him.

Kim

[shelly]

Anyone have any stories to tell about their moods/personality changes while going through chemo? I'm noticing Scott being quite a bear the past few days. It doesn't really seem to be related to the overall situation, as we have been dealing with this for months now, and he has been in great spirits, same old Scott, same old sense of humor. He doesn't have any symptoms of nausea or even being so very tired. But he seems agitated, irritated, edgy, and restless. Little things get him cranky. When we try to talk about it, it just goes around in circles, with him getting more and more edgy. He can't seem to see what I'm trying to tell him.

He even told me he doesn't want me to go to his treatments anymore, which really hit me hard. We have been a team throughout this whole ordeal, and now I feel like he's just pushing me away, and I'm not sure what I've done. He has always wanted me to go with him to all his appointments, all his tests. He seems almost as if he's mad at me because he's sick. Totally different attitude than usual.

I'm hoping this is a normal response to all these drugs, and that it will pass?

[Fed]

Is Scott taking steroids (i.e. decadron or something similar) alongside his chemo treatment? If so, that may be the answer to his restlessness and fits of anger. Don't take it too personally... although I have not had to go through chemo treatment, I can imagine these agents do quite a number on the patients taking them. If you tack on to that a course of steroids, which by their own nature can alter moods, you can probably see that the results may be similar to what Scott has been experiencing.

[shelly]

Yes, he has gotten decadron. Last week through his treatment. Would that linger even while he is in his off weeks? And though I understand what you're saying about not taking it personally, it is very difficult when all I want to do is be there for him, and he tells me I am not invited to his treatment anymore. to me, that was ALL I can really do for him, is be there.

[Margaret]

I am sorry Shelly

Boyce reacted the same way to the Decadron. He was mean as a snake..and he could not control it. Once he stops the chemo, it should get better.

I would feel like I was working so hard and doing all I could and he would bite my head off for no reason. But I would just kiss him on the head and know that it was going to pass.

But I did go to the Disney store and get him a "Grumpy" shirt! He stills wears it on 'off' days.

Hang in there, it will get better soon.

Hugs and best wishes!

[Margaret]

Last day of round one. Still no major problems. Except I think this week has emotionally taxed both of us, more than we ever expected. I am a constant yo-yo of emotions. My particular situation is most difficult, as Scott and I work together, and live together. I have had to take on more hours and more actual work with his absence. Also trying to be there for him, stay happy and supportive. I am exhausted. I want him to come to work so he can help me and so he gets a paycheck, as I cannot really afford to support him for the next 8 weeks. But I want him to stay home and rest so he doesn't get sick, and end up in the hospital, which would be an even greater strain.

I dragged myself to the cancer center today for the end of his first cycle, which should have been a great occasion, but we ended up having a petty silent argument over magazines, of all things. He was quite snippy with me, and I gotta say, it really rubbed me the wrong way. I want to say how dare you, with everything I am doing for you, how dare you give me an attitude over a magazine! I am going through all of this right along with you. I may not be in that chair, but I am here every day, and I am working every day, and I am paying for things for you, and bringing you snacks, and boosting your spirits, and I am EXHAUSTED.

Everyone takes care of him, and asks how he's doing, and I am here carrying just as much burden, and no one asks how I am holding up. I am not the patient. I am just the person who is taking care of EVERYTHING. I have to keep it all to myself as people at work do not and cannot know of our relationship. And as I have these thoughts and feelings, I instantly feel GUILTY on top of everything else for even thinking like that. I know it is not his fault, and I know he cannot do anything about it.

But this week, he felt fine, and I kept telling him he should work for a few hours in the morning so that he can make some money while he is feeling so good. Next week, who knows , the following weeks, who knows...maybe he won't be able to. So he could work to help me out while he is able to. And I can't say any of this to him, because what an awful person I am to say those things to someone who is going through what he is going through. I feel terrible saying here, but where else? If I don't get rid of it, I will carry it, so maybe this will help me let it go. So I can focus on what is most important, getting through this and getting him well.

Thanks to everyone for this website. Don't know where I'd be without it.

Shelly

Sorry to post twice, I came across the Decadron post first, responded, and then saw this.

Before I write, I did not want my post to come after Robert's and hide his very important questions. Please make sure to find out about the number of cycles. Robert knows his stuff on these topics.

I have really been in the shoes that you are standing in Shelly....so many of us have been so please lean this way if you can...we will try and support you.

To this day I still can't believe that I was able to juggle Boyce's twice daily drives to the cancer center, our child, my work, our house, our lawn, our...well...everything. All he could do is sit, and honestly, that was all I wanted him to do...sit and heal. And no matter how many times I cleaned the toliets or dragged that damn mower out from the crawl space and pulled a muscle in my shoulder trying to get it started..none of it was going to heal him. So I kept working and he kept healing...and I seemed to be loosing steam daily. And the calls would come in and ask "how is poor Boyce holding up?" and I would be icing my blisters...and I would smile and say "he is fighting". He had the hardest job of all, but many of us caregivers I am sure did our fair share of fighting too. God took care of the money, he helped me get my job done in 20 hours instead of the 50 hours it usually took, our son never had a cold or cough the entire time Boyce was ill, and our home stood strong around us with no complaints. God did a lot of heavy lifting for sure.

Don't feel guilty for feeling this burden. You are allowed to feel any way you like with out saying you are sorry. This will pass, I promise.