relapse?

[Smartie]

Excellent news about the x-rays and blood results, Tom.

[JonM]

Great News Tom - well done.

[Tombo]

Cheers guys. JonM, looking at your signature, i'm flabbergasted and dismayed at what you've had to put up with.

What on Earth is 5 X GAMEC? I've never heard of that. Sounds like it was harsh.

Hopefully your second fight with this bastard disease will go much more smoothly.

Tom.

[JonM]

GAMEC was developed at St Barts Hospital in London. (Gcsf, Actinomycin, Methotrexate Etopocide and Cisplatin). They have had a lot of success in treating patients with a poor prognosis. I had bad side effects but it proved to be a life saver.

for more details.

Second time has proved to be a lot better. I am back at work now and have no more treatment planned other than checkups and testosterone jabs - Thanks for asking !

[Tombo]

Sorry I haven't checked in recently, but you'll understand if I try and escape thinking about cancer.

I had my latest scan results today. The tumour is less than 1 cm now and is more or less residual thickening, according to the report. Blood and X rays are fine.

Appointments are down to 3-monthly (again) and my next scan is in December (all being well).

Tom.

[Karen]

Gee, yeah, I guess getting on with your life is a good reason not to check in ! Excellent news on the CT and markers! So log off off here, go enjoy LIVING, and check back with another boring "all clear" in three months! Excellent!

[Scott]

Great to hear you're doing well, Tom!

[Smartie]

It's great to hear from you, Tom, and also great to hear you've been getting on with your life

[Tombo]

Another needlessly anxious day.

HCG <2
AFP<2
Chest X-ray clear.

Back again in 3 months.

Didn't even see my oncologist. Just a spec. nurse.

Again, I don't want to sound insensitive, but looking on this board it shocks me to see that people are facing death, which is another reason why I don't post here so often.

[Scott]

Congratulations on the great news, Tombo!

I understand what you're saying about the members here whose cancer isn't responding to treatment. It's really hard to see, and I'm sure much harder to go through. It fires me up to keep doing what I can to help, however small it may be in the grand scheme. Collectively, we can make a huge difference for the 28 million people around the globe living with cancer.

I hope all will feel welcome to post and to share both the struggles and the joys.

[Tombo]

Had my check up today.

My Chest X-Ray wasn't available due to IT problems, but the doctor doesn't think it will show anything.

My blood tests are said to be normal, although an HCG of 2 rather than less than 2 doesn't sit well, although my doctor assures me it is quite normal. It could be the testing at the new hospital I visit, but it just annoys me that it isn't the perfect 'less than two'.

My AFP is 2.5 which seems okay.

My next appointment is November, but I will have a scan before so that results will be available, Hopefully things will have improved yet again, in which case I may never require another scan.

[Smartie]

Hiya Tom.

I'm really glad to hear that everything continues to check out OK.

My own bHCG is often above 2. Everything that I've ever read suggests that a level of 5 miu/ml or below is normal - I've not heard of the 2 threshold before.

Now you can relax again for a few months. Enjoy!

[buster]

Perfect news enjoy your summer

[Tombo]

Yes, it was me confusing what was seen as a 'normal' level, even though both my consultant and internet sources say 0-5 is the normal range. I have no idea were less than 2 came from. It was only when I looked up HCG levels that I knew how far they could go before prognosis was deemed as poor, which was tens of thousands.

I have seen cancer research progress rapidly in just the time I have posted here. New targeted therapies, including one for TC that uses a localised carboplatin 'pellet', the 'cyber/gamma knife', advanced prostate cancer drugs and the further development of PET scanning.

I really feel that my monthly donations to Cancer Research UK are achieving something great, especially as my consultant is a researcher as well.

Buster, I think summer in the UK may well be over, but i'll look forward to a fun-filled August all the same.

Cheers guys.

[ukboyuk]

Hey Tombo, glad to hear things are well with you.

Chris

[Tombo]

Sorry I have not been back in a while. I have not forgotten you.

I just wish to tell you that my latest scan shows no change to the small mass after almost a year, so it probably means what is there is scarring. Hopefully I will not need anymore scans, although my consultant wants to keep me on 4 monthly appointments for now, as we don't want to be caught off guard. My blood markers are as follows;

AFP: 2.5
HCG: 1

That all looks good. I was so nervous last week, as scans are pretty definite, unlike blood markers. I was relieved to hear that the was no sign of regrowth, although a little disappointed that the mass had not shrunk, due to scarring, and it will never look normal, so I will have to get used to that. I also talked with the doctor about the chances of me having cancer in the other testicle, but he has said because my biopsy from two years ago was negative, it is very uunlikely, and not something I should be too concerned about.

I had an ultrasound on my lymph nodes and testicle the previous week at the request of my nephrologist, because I had trouble urinating after doing some heavy lifting, but that is all fine now.

[buster]

Congrats Tombo on your 1 year cancer free. Thanks for filling us in!

[Scott]

Great to hear your recent test results all turned out well, Tombo!

[Fed]

The results are fantastic!

[Smartie]

Congratulations Tombo. Excellent results!

[Tombo]

Thanks to all of you. I'm sorry I couldn't make the UK meet-up earlier in the year.

My fondest hopes go out to all who are currently worried about results, whether you are newly diagnosed or fear recurrence, and those who are receiving treatments. Just remember guys, you have a better chance than patients of any cancer when it comes to cure.
I went through a diagnosis and orchiectomy, then a relaspse and chemo, but i'm okay. It doesn't take away the fear; nothing can really, but please think of the statistics; our disease has a 95-98% cure rate.

Keep on fighting, and keep your family and friends close, as they will always support you, and are fighting the battle as well.

Best Wishes.

Tombo.

[Tombo]

My latest appointment shows that my bloods are still normal and my X ray is clear. Hopefully I will never need another CT scan, mainly because the doctors say another dose of such radiation levels would be unnecessary, as i'm doing quite well.

[Smartie]

Hiya Tom. Great to hear from you and even better to hear your good news. Congratulations!

[Tombo]

I went for another appointment today. I got very nervous as I was kept waiting longer than usual, but my blood and X ray were normal; HCG 1 and AFP 2.3.

I am finally at the six monthly appointment stage now, although I was told another scan would be required around Christmas, just to make sure everything has remained normal. It will be two years in September that I will have been free of active cancer.

[Mazay]

Congratulations!

Thats great news!

[Tombo]

Got my scan results today. Scan shows 'further improvement'. Bloods normal (AFP 2.4, HCG <2. Chest X ray normaL.'
Next visit in July when I will be 3 years post-chemo. I may need testosterone therapy as I get older as my levels are on the lower limit of what is normal for my age.

[hbr777]

Tombo -

Thanks for updating this thread - it is really useful to see how someone has been treated, and goes about being cured and dealing with survivorship over time. Congrats on your continued health!

[Tombo]

Cheers.

Living with the emotional side of cancer treatment is still difficult, even after almost three years. Even now, I often dream about being in hospital and getting results, usually around the time of appointments. It affects everyone, as they know I have an appointment and can tell i'm anxious a week or so prior to visits. The last six months has been the first time in a few years where I've just forgotten about it for weeks at a time. I was lucky with my treatment as it was quite mild, but the stress and dread is the main battle.

My best wishes to you and your husband.

[Tombo]

Another appointment down, and everything is okay. That's pretty much three years post-chemo now, short of a fortnight.

AFP: 2.6
HCG: <2
X-ray clear

Next appointment in January 2012.

[sdslawny]

Another appointment down, and everything is okay. That's pretty much three years post-chemo now, short of a fortnight.

AFP: 2.6
HCG: <2
X-ray clear

Next appointment in January 2012.

Congrats!

You mentioned the posibility of TRT. If you don't mind me asking, do you know what your numbers are? Have you talked to a Dr. about this yet?

[Tombo]

I'm a bit foggy on numbers but I remember the Testosterone level being ~280. It was the lower limit of normal, but things are made difficult because the symptoms are similar to hypothyroidism, which i've had since birth. I'll know again in January.

[DARDEVIL]

I m glad for you. You have been strong. Keep us informed.

[Tombo]

Had my appointment on Thursday. All okay.Testosterone levels are better. Have another 6 months free of TC business. It will be almost 4 years post-chemo when I see the doc again.

[Smartie]

Hiya Tom. Great to hear your good news!

[Tombo]

Had my six-monthly last Thursday. Bloods and X Ray were normal, but I wasn't worried about anything until I saw the doctor - i'd been stressed out from sorting out job interviews, having been to one that morning and then another phonecall just as I was leaving the house wanting me for Saturday. Anyway, it's almost 4 years after finishing chemo, and my doctor said I was coming uup to the point where they consider a final discharge! It didn't make me feel that great because of the stress I was experience with another side of my life, but I appreciate it now.

Congratulations to Smartie for making 10 years. I remember when I first joined this board and saw you were a few years post-treatment, and genuinely thinking, 'will I live that long?' - I had a big tumour in my groin and feared chemotherapy so much I used to have to drink to get to sleep, and end up crying a few times. Then it began and I felt better because I was actually getting treated, and things went well.

I'll never forget those days, just like i'll never forget falling ill from kidney failure as a 13 year-old.I came much clser to death then than with cancer, but I had no idea what was going on and didn't feel the dread that I got with cancer.

Sadly, I have anxiety dreams of a different kind nowadays, but it's something that's partly in my hands.

[Smartie]

Hi Tom
Congratulations on four years! You've been on a long journey. It's great to be alive to worry about interviews and things!

Thank you for the congrats on my ten years (eleven next month!). I too suffered anxiety post-treatment. Eventually my oncologist put me in touch with a psychologist who works with cancer patients (he was part of the oncology dept at which I was treated). It really helped. Might also be worth getting your testosterone checked.