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Adjuvant Chemotherapy
Dear Forum,
My name is Leigh and I am a 38 year old male living in Holland. This summer I was diagnosed with invasive bladder cancer. On September 14th I had a radical cystectomy with a replacement neo-bladder. 10 days after my operation during my hospital saty my Urologist confirmed two lymph nodes were also affected.
I am waiting for an appointment with Oncology to discuss further treatment and a CT scan of my torso is planned at the end of this month to check for any metastasis.
My Urologist has indicated that I will not necessarily be having adjuvant chemotherapy. My Oncologist may decide to watch and wait for any micro-metastasis to develop before offering a treatment plan.
Having read articles on medical trials regarding adjuvant chemotherapy it seems to me that adjuvant chemotherapy has a more positive outcome.
I would be very appreciative for help on this issue from those with personal or professional experience.
Kind Regards Leigh
Leigh, 39
Dx July 2007
TURBT July 2007
RC/Neobladder ,Studer Pouch, September 2007
Erasmus Centrum Rotterdam
TNM Classification: pT4 N2 Mo
4 cycles aduvant chemo Gemzar & Cisplatinum45 Replies-
[quote author=Maria link=topic=1450.msg12721#msg12721 date=1200853043]
[quote author=Wendy link=topic=1450.msg12608#msg12608 date=1200575728]
It’s also nice to get the cisplatin on an in-patient basis, for the flushing, the preventative steroids, all that stuff. If you can stand being in the hospital overnight. I hate it myself, never can get any sleep, the beds, the roommates, yuck.[/quote]
Just curious as to why no overnight stays for ‘flushing’
Is it due to costs?
[/quote]
meant to say here in the USA……re ‘flushing’ -
Dear Melodie and Maria,
Many thanks for your messages and for taking the time to read my web log of my journey so far.
I did have an overnight stay for the Cisplatinum as it is standard here in Holland to deliver the treatment this way. I have read on this site though that some patients have taken the IV home after chemo and flushed at home.
This forum and the wonderful people within it have supported me during difficult challenges and I am very appreciative of that in so many ways….
Kind Regards
Leigh
Leigh, 39
Dx July 2007
TURBT July 2007
RC/Neobladder ,Studer Pouch, September 2007
Erasmus Centrum Rotterdam
TNM Classification: pT4 N2 Mo
4 cycles aduvant chemo Gemzar & Cisplatinum
Hi Leigh, you seem to be coping well, I knew you would. I have read your journal, its very interesting and helpful for me.
My oncologist is waiting for some test results before he decides the combination and start date for the chemo.Hope you continue to do well.
Maria xxx
[quote author=Wendy link=topic=1450.msg12608#msg12608 date=1200575728]
It’s also nice to get the cisplatin on an in-patient basis, for the flushing, the preventative steroids, all that stuff. If you can stand being in the hospital overnight. I hate it myself, never can get any sleep, the beds, the roommates, yuck.[/quote]
Just curious as to why no overnight stays for ‘flushing’
Is it due to costs?
Leigh,
I read your journal…very good recording and hopefully it will aid others who must go on a similiar journey…hope you continue to do well with your chemo. Melodie
Melodie, Indy Pouch, U.W.Medical Center, Seattle, Dr. Paul H. Lange & Jonathan L. Wright
Hello Forum,
I would like to thank everyone for your kind words advise and support in my search for the best treatment.
Chemo has started now and if anyone is interested you can read my web log regarding my treatment and appointments etc…
The initial entry’s are extracts from my story on the story board section from this web site which you may have already read and follows through to present day…
http://www.zeelandnet.nl/weblog/data/leigh/
Many thanks
Leigh
Leigh, 39
Dx July 2007
TURBT July 2007
RC/Neobladder ,Studer Pouch, September 2007
Erasmus Centrum Rotterdam
TNM Classification: pT4 N2 Mo
4 cycles aduvant chemo Gemzar & Cisplatinum
Hi Wendy,
They removed 29 nodes in total and my cancer growth on intial cystoscopy was 2cm and after RC pathology 4/6cm with invasion into the fat layer and prostate.
It was described as a flat growth clasping around the outside of my bladder although inside the bladder as a cauliflower shape.
I am happy they continued the RC operation though…not sure how I would of felt waking up to be told it had gone too far….
Just shows you also CT scans cannot see everything especially when the cancer is speading it’s nasty wings thinly and sneakily around the body….
Thanks for your support once more.
Kind Regards
Leigh
Leigh, 39
Dx July 2007
TURBT July 2007
RC/Neobladder ,Studer Pouch, September 2007
Erasmus Centrum Rotterdam
TNM Classification: pT4 N2 Mo
4 cycles aduvant chemo Gemzar & Cisplatinum
Hi Leigh,
I’m glad to hear you’re well underway. It’s also nice to get the cisplatin on an in-patient basis, for the flushing, the preventative steroids, all that stuff. If you can stand being in the hospital overnight. I hate it myself, never can get any sleep, the beds, the roommates, yuck. But I have never had chemo. If I ever cross that path I’d like the options you’ve been given.17 positive nodes out of how many removed? Just curious.
I wish you much success with this treatment. I know people who have had amazing results and are doing well.
Congratulations on finding a doctor you are happy with and who is working with you.
Take care,
Wendy
Dear Wendy,
I am so happy we are back online with the forum as I tried to check the other couple of evenings and I had access to everything except the forum. It just made me realize how much support I gain from this forum. Two nights down felt like 2 weeks down…glad you just changed servers :)
With regard to adjuvant chemo in Holland it is indeed also published in information folders in the oncolgy waiting rooms that it is offered as a treatment for cancer.
My oncologist at the erasmus centrum in Rotterdam refused to offer the treatment as he had no clear evidence to prove it would give me a better chance. Which in a way is true as the trials are still running in Europe and he offered a few times if I wanted to participate and I declined.
Even the oncology board at the hospital refused to offer chemo. I thought also that maybe they assume my operation was a curative procedure because they removed everything. When I questioned my oncologist about that he said no and that he was suprised that on my last CT scan I did not have a spread of disease due to the 17 positive nodes….
Wendy I am so happy I found a great lady Oncologist in Gent in Belgium and my chemo is being offered at my local medical center. Her advise to me was that with my diagnosis I had a 20% chance of being here in 5 years time so I felt the more agressive path was for me… all things considered.
I started the chemo Tuesday this week and I had the Gemcitabine in out patients for 2 hours and thankfully had no reaction or side effects….although I am sure it is busy inside of me.
Wednesday this week I checked in for one night on the oncolgy ward and had the Cisplatinum. It started at 10:00 and finished at 10:00 today when I was released to come home. The Cisplatinum was delivered over 3 hours and I had all the other stuff before and after the chemo. Sickness meds Emend 80mg was offered through the IV along with 6mg Dexamethason and repeated at the end also. Also lots and lots of IV fluid to flush out my system.
Luckilly and thankfully I have had no side effects or reaction to the chemo…I think the other meds helped to keep the yucky feelings away. I have to take the meds mentioned above for two more days in tablet form.
I did however have a busy time walking to the loo every 30 minutes to empty my new bladder as capacity is 350ml and then the pain starts if I do not void. This kept me up all night and I had a few accidents in my sanitary pads. As the chemo is a progressive treatment and side effects may increase I will ask for a catheter next time so I can sleep the night away.
I do feel tired but I put that down to my 30 minute cat naps all night long and a snoring neighbour in the other bed :)
Off to bed for a few hours now…..
Kind Regards
Leigh
Leigh, 39
Dx July 2007
TURBT July 2007
RC/Neobladder ,Studer Pouch, September 2007
Erasmus Centrum Rotterdam
TNM Classification: pT4 N2 Mo
4 cycles aduvant chemo Gemzar & Cisplatinum
Dear Melodie,
Thanks for your message of kindess and support.
I started watching lots of funny movies and series lately…absolutely fabulous (english version) is keeping me in good swing at the moment.
Kind Regards
Leigh
Leigh, 39
Dx July 2007
TURBT July 2007
RC/Neobladder ,Studer Pouch, September 2007
Erasmus Centrum Rotterdam
TNM Classification: pT4 N2 Mo
4 cycles aduvant chemo Gemzar & Cisplatinum
Hi Leigh,
I’m sorry, I’ve been out of the loop this past month or so, and am trying to catch up a little. When I read about the doctors not wanting to hand out chemo “like candy” to you, two things went through my mind, “Could it be they feel the involved nodes have been removed, which would mean they feel you are cancer free and don’t want to treat something aggressively that can’t be seen?” The other thing – I have noticed a different mind-set in Europe regarding chemo. I live in Holland, where you were told that chemo post-op with positive nodes is not necessary. I read the European journals and believe me, that’s not what is being published! But as with your Belgian doctor, I’ve also noticed that some experts are less than exuberant about chemo for blc unless there is visible metastases. In the end it is the patient’s decision. Patient preference is paramount in getting a good outcome, I truly believe this (non-scientific) statement.
By now you should be 2 days post your first treatment. Perhaps you are feeling side effects but maybe not…not everyone gets them! May you fall into that category.
BTW, the only way to determine if there are micro mets is a very thorough biopsy of the node. This isn’t usually done aside from sentinel node biopsies, and that technique hasn’t crossed over to bladder cancer yet, for whatever reason. Micro mets are 2mm and less in size and no existing scan can pin point that yet. (I know all this because I had a sentinel node biopsy with the mastectomy, that totally changed the outcome for me and led to a more aggressive approach, and better staging).
PETs are great, but I’ve been hearing/reading that CT/PETs are even better for finding mets. I saw they have this now at the Dutch cancer institute, where I was for my check up recently.
Where are you now? Sorry but the thread is long, and my attention span short today…and more importantly, how are you doing?
Happy new year to you too…
Wendy
Leigh,
Just want to say I agree with all the positive comments already made about you; you will have your anxieties and fears but you also are very smart and courageous as indicated by your comments. I am sure those closest to you are very concerned and also in awe of your strength. You sound like a very positive type of person but just now it is tough for you to always feel that way. Try to find time for some feel good movies to help lift your spirits. I agree that having chemo sounds like a wise decision if only you can get the doctors approval. Best of luck to you. I have added you to my prayer list. Take care and stay strong! Melodie
Melodie, Indy Pouch, U.W.Medical Center, Seattle, Dr. Paul H. Lange & Jonathan L. Wright
Dear Ginger,
Thank you very much….I hope so too.
I hope your husband Gene is doing well and you are taking good care of yourself also.
Bye bye
Leigh
Leigh, 39
Dx July 2007
TURBT July 2007
RC/Neobladder ,Studer Pouch, September 2007
Erasmus Centrum Rotterdam
TNM Classification: pT4 N2 Mo
4 cycles aduvant chemo Gemzar & CisplatinumLeigh,
Many prayers you get through the treatment without any yucky ,crappy feelings. Everyone has different reactions so I hope yours will be swift and no complications.!!!!! Ginger
Dear Karen,
Many thanks for the explanation of the MX classification.
I am not sure about the PET scan….I will query that next time I go for a check up :)
The MX: classification given on my path report had changed probably because on my last CT they found four nodes on my right lung and a cyste on my right kidney.
When I read this I just about freaked out as nothing was mentioned by my old oncologist during my appointment for the results of the scan.
During my last appointment on the 24th Dec, my new oncologist explained that the four nodes on my right lung were kalked from previous scarring and not a spread of disease. Th cyste was also harmless and did not present a danger to my health.
The next steps for me now are to see the chemo nurse this Friday to get information on the precedures and side effects. The following week starting the 14th I will start the treatment.
Happy New Year everyone.
Leigh
Leigh, 39
Dx July 2007
TURBT July 2007
RC/Neobladder ,Studer Pouch, September 2007
Erasmus Centrum Rotterdam
TNM Classification: pT4 N2 Mo
4 cycles aduvant chemo Gemzar & CisplatinumSign In to reply.
