Wesley's Surveillance Thread

[amorgan74]

Nov chest x-ray was unchanged meaning good for us. Our two little buddies are still hanging out (see Ballroom - amorgan74). We don't have markers back yet but I think they are going to be okay too. Our upcoming schedule is labs and x-rays every month through Feb, CT scan in Jan and seeing the Dr. in Feb. I will keep posting as we go, we are still working with the urologist on Low T and HRT. Hopefully this will get better as time goes by too. Happy Turkey Day Eve everyone! April

[Kman99]

Excellent News!

Have a great Thanksgiving!

[amorgan74]

We are clear for another month. According to the office the AFP is up a little since it's been at a trace for the last six months. It's now 3.5 but I am pretty sure that's okay. Chest x-rays are the same with Spot1 and Spot2 still hanging with us. I hope everyone has nothing but good reports too and is doing well. April

[Kman99]

Great to see this news April! AFP levels can and will fluctuate, but Wesley's remain within normal ranges.

[justinsmom]

That is great news April!! God Bless-Lanette

[amorgan74]

It's that time again, we have x-rays and labs tomorrow and Wesley has a bit of a cold right now so he's not looking forward to this. Will let everyone know what results are in about a week. Here's hoping everyone has a good weekend and is doing well. April

[Don]

Best of luck to you both!!!! It will get easier as time passes to go back and get checked-- I think we all have high anxiety levels for the first few scans!!! He will be fine!!!!! DON

[amorgan74]

Our results for this month are in, chest x-ray clear and labs are stable AFP is still 3.3 so that's good. We go for the seven month CT scan 2/9 with labs and the yummy banana goo!!! Mid April will be the one year mark for diagnosis and mid July for 1 year after chemo. It will be nice to get there and I can't wait until Spring gets here this year. Hope everyone is doing well!
April

[dwrickel]

Good job! I'm glad things are a-okay so far! You guys deserve nothing but a-ok from here on out! CANCER, HIT THE ROAD JACK, AND DON'T YOU COME BACK NO MORE NO MORE NO MORE NO MORE!

Doug

[amorgan74]

I am right there with you, rowing on the other side of the boat. Oh great joy when this is a thing of the past and everybody's completely healthy again. I am so looking forward to Spring, I have put everyone on alert that as soon as the water temps warm I will be headed South to the nearest piece of ocean from my house and I dare anybody to move me for a couple of days.

April

[dwrickel]

That's the spirit, lady! You're always welcome here in South Florida to be a beach bum for awhile.

[Kman99]

Great news April! Very happy to see the positive results for Wesley. FYI - Bermuda has fantastic beaches!

I fly into Boston tomorrow...CT Scan on Monday. I have little anxiety and feel all will go well. I get to meet Kev332 as well. A small group from the Dana Farber Marathon team is getting together for a group run. Updates to come!

All the best!

[amorgan74]

Good Luck, my thoughts and prayers are with you and the gang. We do the scans next month so I know everything will be okay for you and him. I think we are going to do the cruise thing in the fall for our tenth anniversary. I just have to plan it around the weather. I will look for your results in about a week and I got my fingers crossed for you. April

[Scott]

Originally Posted by Kman99

I get to meet Kev332 as well. A small group from the Dana Farber Marathon team is getting together for a group run.

That's cool. Enjoy the run, both of you!

[justinsmom]

April, that is great news!!! Justin had his first CT scan today, he has had 2 blood works come back good, I don't have them in front of me but I think AFP is around 2.2-it was 11 before his RPLND. I need to post an update on Justin's thread-just wanted to tell you congrats!!! God Bless-Lanette

[Kev332]

Great news April about the clean test results!!

Kman, looking forward to meeting you and your wife tomorrow. Should be a good time. Looks like the weather is going to okay. Running around the Charles River is great!

Take care,

Kevin

[amorgan74]

Thanks, Ms. Lanette, that's good with Justin's blood work too. Our first CT in three months is coming up and I will be glad to get it out of the way. I was reading in another thread about the meds for anxiety and I wanted to tell you that Wesley's doctor gave him some that he really didn't use but I went to my doctor and he gave me something different that I did use here and there through chemo. It was so stressful taking care of him and then trying to be a mediator between all of the families and yet keep our house as peaceful as possible. I was also concerned about Wesley's mom because she had a really hard time with his diagnosis and I had to be very delicate with her. Wesley started chemo less than 4 mos after his Dad stopped chemo for Hodgkin's lymphoma, I know she was carrying a lot of stress over this happening like it did. We actually took his Dad up to Emory here it Atl to get his biopsy done and little did we know we'd be working with the same doctor less than a year later. So I know how your ups and downs must go with your son and I am glad every body seems to be getting better. April

[justinsmom]

Thanks for the response April, I just was listening to Christian radio on my way to work this morning and they were talking about the "seasons" of life. In Ecclesiates 3 where the Bible states : "To everything there is a season, A time for every purpose under heaven, A time to be born and a time to die......." "A time to weep and a time to laugh" and through our lives we all have seasons....Falls, Summers, Springs and Winters.....not just with things we are going through but also with where we're at in life-raising kids; empty nester; retired ect. Anyway, going through cancer is definitely a bleak "Winter" season, and then the Winter gradually gives way to new growth and Spring will come again.....some of us here are seeing the buds of Spring take root as we are pretty much through the "Winter" and for those just entering their "Winter" season the promise of a Summer is what keeps us going...We have Hope as long as there is that Promise of new life....BTW Justin is getting married in 2 weeks!!! God Bless, Lanette

[Jens]

Congratulations on Justins upcomming wedding!
May they live happily and healthy.

Best wishes
Jens

[Scott]

Originally Posted by justinsmom

BTW Justin is getting married in 2 weeks!!!

That's wonderful! Best wishes to Justin and his lucky bride!

[Mom]

I didn't realize that Wesley was being treated at Emory. The urologist who treated my husband 25 years ago is now at Emory teaching and practicing. When my son was diagnosed, he was the first person I called. His name is Dr. Peter Nieh. Have you run into him? Dianne

[amorgan74]

Ms. Dianne: Wesley's doctor goes to two offices, one in Atl at the Crawford Long division of Emory on Peachtree St and the other at the Georgia Cancer Specialist office in Fayetteville. We can see him at either office but usually we go to see him at the Fayetteville location and I think the other GCS office is in Crawford Long. If he wants special tests done or routine cancer surgery he sends his patients either to the Crawford Long location or the Emory University Hosp on campus. I am more familiar with the hospital on campus because that's where my Dad was treated for the 10 months that he lived after diagnosis. I also ended up there a couple of years ago with a bout of viral meningitis. That's some rough stuff too but very short term. Across from Dr. Carr's office is a hospital that is part of the Piedmont group so we've been lucky that we have been able to stay on the Southside of town for care. Dr. Carr has been adamnant(sp) that if Wesley needs surgery we go to IU. We've also taken Wesley's dad to Emory for his biopsy on his lymph nodes in the neckin 2004. We found out Friday that Dr. Carr is sending Wesley's dad back to his ear, nose and throat doctor to take a look down his throat to see if there is anything there. I think Dr. Carr is a little concerned and quite frankly so am I. What was your husband treated for 25 years ago TC? April

[amorgan74]

Ms. Lanette: 2weeks, wow, congrats on Justin's upcoming wedding. I know that is usually a hectic time but enjoy it. April

[Mom]

My husband was treated by Dr. Nieh for TC at UCONN Medical Center in 1980. We were living near the Med Center at the time. Had the I/O in August and the RPLND in September. We had never heard of TC. In those days there were no ultrasounds or CT scans to see if it had metastisized. Dr. Nieh and my husband were the same age (35) and each had sons the same age. We did know that the RPLND was a very serious operation and at first my husband would not agree, he wanted to go with the 80% chance that he was cured by the I/O, but Dr. Neih responded, "You know what your chances are, Jay, they are 50-50, either you have it or you don't." Well, not liking those odds he had the surgery. There was no cancer in his lymph nodes, I think they took out 57. Chemo in those days was very, very damaging and a "last resort." The follow up consisted of blood tests and chest x-rays. Dealing with our son's TC was horrible but we had confidence that he would be okay because we had lived with it. Dianne

[amorgan74]

I worry about this, I try not to but knowing what we know now with our little boy and him having the I/O a little over a week old it bothers me some. I am requesting his medical records from that surgery and specifically want a pathology report to see what was in that testicle. I try not to think about it and know that if we go down this road again then at least we will be well prepared and very optimistic under the circumstances. It's good know that we've got drs like Dr. Nieh and Dr. Carr to help take care of our men. I find a certain amount of comfort in knowing that your family has fought this and seems to be doing well. It does ease my mind to know this type of cancer is pretty curable and that my faith in God will have to take care of the rest. You know that "tie a knot and hang on when you are at the end of the rope" thing. I kind of picture His hand in mine instead of that rope and know it's going to be okay. Thank you so much Ms. Dianne and you may be hearing from me for a long time to come. April

On a brighter note: After three days of the Georgia rain we have sunshine and clear blue skies. I could pull my desk and pc out to the front lawn and work there today. I know it will be darn, near cold again before Spring hits but today is definitely a "hooky" day here. Lord help to make it until five and to come back after lunch!!!!

[Mom]

Had we known there was a genetic link we would have had our son banking sperm and having blood tests at 18. I am praying now that he will be able to have a son of his own even though the child might inherit the gene. When my son was feeling really sorry for himself I asked if he would rather not have been born than face the diagnosis and treatment. He looked at me as if I was crazy. He is really having a good life. He will be a year post chemo on January 29. Dianne

[amorgan74]

We were talking about trying to have one more child but I am not 100% sure about it. I feel like my son will have close friends and extended family but I also see how much we depended on Wesley's sisters when we needed them. I will be 32 in Sept and Wesley will be 35 in June so I wouldn't want to wait more than a couple of years to have another baby. He got mad and told me that if I wanted one more I should have already had it when the doctor talked about sperm banking. I kindly reminded him who did the child birthing and that I had a little more say so. I told him that as long as he could upload then I could download. End of discussion. I am giving myself a five yer grace on that "all children on the way by 30" thing. We are not in a hurry to make this decision given that we were advised to wait at minimum one year post chemo before trying and with all of the issues with low T that we have been battling I don't think it's going be a problem taking our time on the baby decision. One year post chemo will be 7/20 and I guess we'll still be taking it one step at a time.

[justinsmom]

April, I just came from seeing an ultrasound of my first grandchild...my oldest son & his wife are finally pregnant (she has lots of female problems) In fact I looked in my journal and it was actually the day after Justin's final chemo that Josh called & said they were pregnant, so it was really a blessing to get that news! I hope & pray that some day Justin & his bride Candice will be able to call with that awesome news. So keeping in mind your desire to maybe have another baby someday, I will pray God's will in that, Lanette

[amorgan74]

Ms. Lanette: It's really turning into a much harder decision than I thought it would be. I feel in my heart we will either try once more or adopt in the next couple of years. I'm okay with either one but I am so glad we have plenty of time to think about it and I guess I can look at it like if we had a passle of children running around already it would be a moot point. I know God will lead us in whatever we decide. And a big Yee Ha!!! on that grandbaby. I remember my grandmother being so fascinated by the ultrasound images and she talked about not having them in her day. I think she was as excited as we were to have little feet running around. I will never forget when she was in the hospital right before she passed away and she said she had to get better and I asked her why, she replied in a very serious tone, "Nobody else can take care of him better than me." I don't know how many times I have relied on all that I have learned from her and even whispered, Okay, What Would Granny Do? WWGD. I know you will be a top notch grandmother too!!! April

[justinsmom]

Thanks April-I hope I will be a good "grandma" (sounds really funny-the fact that I'm only 45 makes it sound older than I am) but that will be nice cause hopefully I will have lots of energy. Anyway-the one BIG thing I really learned through all this is that God IS in control. And I could SAY it & I could BELIEVE it but, He really allowed me to LEARN it. Don't "worry" about your son, you have to totally turn him over to God and know that He is a really big God and He knows our tomorrows, He knows your sons tomorrows & He knows his future. Whether his future contains siblings or offspring.....And He knows your husbands tomorrows and He knows your tomorrows. He is an awesome God, He promises us peace through Jesus Christ & most of all He loves us. He allows us to go through trials so we can draw alongside others in similar situations-as everyone here does SO WELL! God Bless-Lanette

[amorgan74]

Thank You, Ms. Lanette. I am getting better at understanding that it will all be okay and I guess it has taken a little bit for me to move over to the passenger seat and let someone else drive. At least that's the way I felt. I know God was driving the whole time anyway but the ride got a little bumpy as I am sure it will again here and there. I know my little boy will grow up to be a healthy young man and it must be the Mama in me fretting over him. That probably doesn't ever completely go away does it? April

[justinsmom]

No it never goes away. (my sons are 25, 21 & 19 & even though it's not like the "worry" over them when they were little it will always be there) We wouldn't be good mothers (and fathers) if it did. Lanette ><>

[amorgan74]

Well folks, month number seven is down, x'ed, marked off, finished!!! All scans and labs are good. AFP was at 2.3 and all other markers are normal. The doc said normally he would consider moving some of the scans and x-rays out a little more but with the history of "shoddy lymph nodes" (their words, and I whole heartedly agree) they are going to keep his CXRs at every month with labs and the CTs (chest, ab & pelvis) at every three months for at least another six months. We found out last week that Wesley's dad is showing (via PET) signs of cancer activity in the right side of the neck and jaw in his lymph nodes. He had Hodgkin's Lymphoma about a year and a half ago and had finished his chemo roughly four months before Wesley was diagnosed. I think for right now his doctor is going to watch this to see what it's going to do.
Wesley's check up was good but also a constant reminder that my husband is a cancer survivor. I choose to put most of the emphasis on the survivor part. We will liveSTRONG each day and enjoy every moment. I think some sand and sun may be in order soon to celebrate!!! Hope everyone's having a good week and feeling well. April

[Mom]

What great news, April. I am sure you and Wesley are relieved. I think it would be a lot easier to go on with life without the constant monthly and quarterly reminders. I am sorry to learn about your father-in-law and I just don't know what to say except that I think it is still treatable. My cousin had Hodgkins lymphoma and had several reoccurrences. She was diagnosed at 30 and is now 59. It hasn't been easy but she has raised two beautiful children and watched them graduate from college. One is getting married in May. Sooo, tell him even if it reoccurs it doesn't mean he won't go on to live a full life. So, where are you going to celebrate? Dianne

[amorgan74]

We are trying to get together a trip to Universal Studios sometime at the end of June/first week of July for about five days. We will probably slip away for a long weekend to one of the beaches on the East or West side of the Panhandle or Jekyll sometime in April for a few days. The short trip is the kind of "no plan, no schedule" trip purely for relaxation and getting out. The other is the kind that you need the extra day off to rest and do laundry afterwards, it's usually where we sit down at the computer and do all of the planning and the little boss (our son Jarrett, age almost 8) does alot of the decision making. That one's all about him. I am really looking forward to it this year.

Welsey's dad is getting a little older mid 70's and he has already made a comment about not doing chemo again so we have a bit of work cut out for us if that time comes. I am hoping that was fear talking and he wasn't too serious about it. Wesley's concerned about him and doesn't want him to give up trying. I know the chemo is hard on everyone and the doctor told him his smoking a couple of packs a day makes it that much harder on him at his age. He is trying to cut back since Wesley quit smoking but it's hard for someone like him set in his ways and believing that cigs have no affect on cancer. We are patient with him and just try to help him take care of himself and do what we can to give him our love and support. We pray about it and just do what we can for him. April

[justinsmom]

April, so glad to hear Wesley's results are good....Hope you can relax and get away and enjoy some sun & surf!! you know 70 isn't all that old to me anymore-I'll pray Wesley's dad will seek direction in any decisions he makes regarding his treatment options. Take care-God Bless-Lanette ><>

[Don]

Glad to hear the good news!!!!! Enjoy the vacation--needless to say--YOU BOTH EARNED IT!!!!!!

[amorgan74]

Thank you all. I am counting the days to get back out of the house and be able to do some R&R. April
I just wanted to tell you ladies out there how much I appreciate your being there too. My mom and I aren't very close due to the household I grew up in and after my grandmother died in 2003 I kind of have floated a little without her. It has been extremely supportive to have an adoptive family with all of you out here and I really am glad I found this place.

[Kman99]

Sorry about the delayed response, but it's very good to see the excellent news about Wesley. And make sure to act on your idea/plan to celebrate. It will be healthy for both of you to get away for a few days.

All the best!

[amorgan74]

Hey Kman, How about you? Should you be doing your check up for this month soon?
April

[Kman99]

My chest xray and blood work are scheduled for next Monday. A bit later this time around as my Bermuda doc had a hard time scheduling my Feb appointments. Needless to say, he got an earful.

[mrb1980]

April,

Thanks for keeping us informed of Wesley's surveillance. Since his cancer and treatment were just about identical to mine, your continued positive reports are always good news...thanks for the inspiration!

[amorgan74]

You're welcome, I try to follow those especially that started surveillance about the same time and those that like you had similar treatment. We go around the middle of the month and I think I got a little worked up over this last visit because of the scans that he hadn't had in a while. I am having a little trouble sleeping again and I think will have to try something to help me get back into my routine again. A few minor reoccuring nightmares!!! Bad dreams from chemo would probably be more accurate. His third round was very, very bad. I know you guys went through the ringer from the going through the whole diagnosis, treatment, surveillance stage but I still have a bad day every once in while when all that we have been through hits me. I guess that's part of being human. I know everything will take care of itself and I am so glad to see so many men out here that are successful in overcoming TC! Hope everyone is doing well. April

[amorgan74]

We have made it through our eight month check up with nothing unusual happening. I am thankful for the ordinary after everything that has happened in the last year. Tomorrow I will get actual numbers but was able to confirm with the nurses on Friday that CXRs were clear and labs were normal. I can't believe the one year mark since that first phone call is approaching. It seems like yesterday but then in another way it seems like forever and a lifetime ago. I guess ya'll know what I am talking about. Hope everybody is doing well or getting better. April

[Mom]

That is great news, April. When you are going through it time seems to stop, when it is over, time seems to fly. You will be reaching the one year milestone before you know it. Dianne

[Kman99]

April..

I responded to this during the server change and my message was lost. Sorry for being late, but glad to see things continue to go well for Wesley!

[amorgan74]

I am happy to say that we made it through this April 11th with no phone calls, no visits to the hospital, no new cancer diagnosis. It has been one year since the I/O surgery and for me it's kind of like that hokey stuff they said about childbirth. It all never goes completely away!!! We had a nice calm evening and look forward to getting the check up Thursday out of the way. I will post results sometime toward the middle of next week and I am sure they will all be good. I can't thank all of you enough for the support and the encouraging words sent my way and hope to be able to pay it forward to someone else. You guys and gals are the greatest. April

[Mom]

Keep the good news coming. Jeff is at the oncologist right now for his regular every 3 months check up. I wish I didn't know it was this morning so I wouldn't be thinking about it. I am waiting until 12 noon to call him. I feel like you do, I am sure he is okay, but we always have that niggling little concern. It is great to pass milestones, though, isn't it! Dianne

[justinsmom]

April, seems I don't have time when I get on here to look up everyone's prognosis, but I just checked Wesley's and am waiting to hear the good news.....Justin had his 2nd CT scan and it was clear!! You have been a friend...God Bless-Lanette

[amorgan74]

I know an AFP of 3.9 is way under normal but I am so used to being around 2.5 - 3 that this is a little worrisome to me. I am waiting to get CXR results and I feel like they are going to be clear. We have the next CT scan 5/4 and I just wished I could let all of this completely go and trust that we'll not have another one of those "phone calls". You all know the one I am talking about. Where you sit down in the chair and kind of stare at the wall and don't know whether to laugh, cry or yak or do all of them at the same time. I think we call that spazzing!!! I feel about 90% okay with everything but have that last little bit of doubt that just won't go away. I am going to continue with the power of positive thinking and look forward though. I will post when I get the CXR report which should be tomorrow and keep my fingers crossed. I will also post more in the other forum for Hormone Therapy, that's a whole nother story. Wesley seems to be feeling pretty good and enjoying life. Thanks to all of you who keep checking on us. April