Treatment for recurrence in lynph nodes - what to expect?

SuziDezi

Now that I am having chemo once again for a recurrence I would really like to hear from those sisters who have been there before me. It is the same drugs - carbo/taxol in the same cycle. My first bout was not too bad at all until the 3rd cycle when I blacked out on day 4, hit my face on the edge of the sink and then was really weak for at least another week. They lowered the dose and it is the lower dose I am getting this time. Nonetheless I am reacting more strongly this time - metallic mouth right away, more nausea (although I am still eating well), very sore legs. No doubt this is to be expected since chemo is cumulative and has already wreaked its havoc on my body even though that was 15 months ago. (I included a synopsis of my cancer journey in my reply to Ro)
Does this sound like what you experienced? Any advice for the next months? This sisterhood is a godsend and I want to thank all of you who post regularly for being there. Perhaps I can now be of more help to the group as I cope with this next stage.

daisy366

Suzi
Hi Suzi. Where is your recurrence and has this been verified with biopsy?

Sounds like you may already know my story but I will repeat. I had recurrence in supraclavicular lymph nodes. My doc used the term "resistant". Consequently he wanted to give it major tx. I had low dose taxol (I don't really know why carboplatin not included) given weekly and low dose tomo radiation given daily. Doc said this protocol would be synergistic (amplified b/c both working together). Tx lasted 7 weeks.

Just something to think about. If someone had a bad experience doesn't mean you will. We are all different. Please don't assume your tx will be difficult if you read it here.

I hope this info is helpful. I wish you all the best. Keep us posted. Mary Ann

Pat51

Suze
I am sorry to hear that you are having to have chemo for a recurrance. Were you surgically staged during your original surgery done after diagnosis? I have just finished chemo. My doctor gave me drugs for nausea and also pain medication for the aches. It made things much more tolerable. Are you having neulasta shots after each chemo? Keep drinking as much water as possible. I reacted totally different to the first 3 treatments verus the last 3 treatments.

Good luck with the chemo. I hope that things will become easier.

Pat

snowbird_11

Sorry to hear you are
Sorry to hear you are experiencing recurrence and are back in chemo. My UPSC recurrences (yes, plural) have all been in lymph nodes: first to show up were the para aortic, that was in August 2009, biopsied in Oct '09, size unchanged in Dec but then opted to start chemo in Jan 2010. My gyn onc put me on Doxil first but due to some odd side effects changed me to Gemzar as single agent. By July, CT scan was normal as well as ca 125 which had been as high as 650 after starting Doxil. I took a 2-month break from chemo for a vacation and ca 125 crept back up. Restarted gemzar and all returned to normal after 4 cycles including PET scan. That was jan 2011. By April I had a L supraclavicular mass that was biopsied to confirm recurrence and other lymph nodes also showed up on PET /CT. CA 125 got as high as 1036. I did localized radiation treatment this summer for supraclavicular nodes which were uncomfortable and now ca 125 is back down to 350. However, I have some new nodes showing up as well. Arrgghhh! I am consulting with another gyn onc in near future for additional thoughts on treatments but I a sure I'll be back in chemo in near future just not sure what it will be. My problem is bone marrow being able to tolerate additional chemo but I was able to achieve my NED status with reduced doses of Gemzar which is all I could tolerate so i am curious about managing issues with lower doses of chemo.

I have yet to go back to carbo/taxol which may be something to consider. Hopefully this combo will give you good results.
Annie

btw, i was just up visiting family in Canada last month, on Vancouver Is., what part of Canada are you in?

SuziDezi

snowbird_11 said:

Sorry to hear you are
Sorry to hear you are experiencing recurrence and are back in chemo. My UPSC recurrences (yes, plural) have all been in lymph nodes: first to show up were the para aortic, that was in August 2009, biopsied in Oct '09, size unchanged in Dec but then opted to start chemo in Jan 2010. My gyn onc put me on Doxil first but due to some odd side effects changed me to Gemzar as single agent. By July, CT scan was normal as well as ca 125 which had been as high as 650 after starting Doxil. I took a 2-month break from chemo for a vacation and ca 125 crept back up. Restarted gemzar and all returned to normal after 4 cycles including PET scan. That was jan 2011. By April I had a L supraclavicular mass that was biopsied to confirm recurrence and other lymph nodes also showed up on PET /CT. CA 125 got as high as 1036. I did localized radiation treatment this summer for supraclavicular nodes which were uncomfortable and now ca 125 is back down to 350. However, I have some new nodes showing up as well. Arrgghhh! I am consulting with another gyn onc in near future for additional thoughts on treatments but I a sure I'll be back in chemo in near future just not sure what it will be. My problem is bone marrow being able to tolerate additional chemo but I was able to achieve my NED status with reduced doses of Gemzar which is all I could tolerate so i am curious about managing issues with lower doses of chemo.

I have yet to go back to carbo/taxol which may be something to consider. Hopefully this combo will give you good results.
Annie

btw, i was just up visiting family in Canada last month, on Vancouver Is., what part of Canada are you in?

A belated response
Hi ladies
Thanks for your concern and advice as well as your stories. I was in Montreal helping my son celebrate a big birthday - 40 egad! - and had no time to be online. It was great fun - it always is when grandchildren are involved. But I digress. Yes, Marianne, they did a needle biopsy that confirmed clear cell cancer 'consistent' with UPSC. At the time of the original diagnosis I was staged at 1C - but then there was that pesky para-aortic node that turned up right after chemo and promptly disappeared after radiation even though I only had external pelvic radiation. So who knows what the true state of affairs was - or is!
For this new round of chemo I am getting pills for the nausea (Zofran/Ondansetron) to use for days 1, 2 and morning of 3 and and the steroid dexamethasone for days 2, 3 and 4. Of course I also have something for constipation and another drug in case the Zofran doesn't work. Last time I ended up using the Zofran for a longer time - until day 5 - and may do the same again. My stats have always been pretty good - so no neulasta as of yet. Luckily I have not been bothered yet by any of the enlarged nodes - they are all under 2 cm as far as we know. So that is my story to this point. I will have a second infusion this coming Friday and will let you all know how things are going then. Until then, I really appreciate your 'conversation' As we say here in Ottawa (at least those of us who speak French) - mille mercis!

daisy366

SuziDezi said:

A belated response
Hi ladies
Thanks for your concern and advice as well as your stories. I was in Montreal helping my son celebrate a big birthday - 40 egad! - and had no time to be online. It was great fun - it always is when grandchildren are involved. But I digress. Yes, Marianne, they did a needle biopsy that confirmed clear cell cancer 'consistent' with UPSC. At the time of the original diagnosis I was staged at 1C - but then there was that pesky para-aortic node that turned up right after chemo and promptly disappeared after radiation even though I only had external pelvic radiation. So who knows what the true state of affairs was - or is!
For this new round of chemo I am getting pills for the nausea (Zofran/Ondansetron) to use for days 1, 2 and morning of 3 and and the steroid dexamethasone for days 2, 3 and 4. Of course I also have something for constipation and another drug in case the Zofran doesn't work. Last time I ended up using the Zofran for a longer time - until day 5 - and may do the same again. My stats have always been pretty good - so no neulasta as of yet. Luckily I have not been bothered yet by any of the enlarged nodes - they are all under 2 cm as far as we know. So that is my story to this point. I will have a second infusion this coming Friday and will let you all know how things are going then. Until then, I really appreciate your 'conversation' As we say here in Ottawa (at least those of us who speak French) - mille mercis!

glad you are doing well
I'm sure things will go well - your cheery attitude will go far. I also responded well and did not need neulasta. And the antinausea meds did their thing fine.

My best to you, Suzi. Mary Ann

snowbird_11

SuziDezi said:

A belated response
Hi ladies
Thanks for your concern and advice as well as your stories. I was in Montreal helping my son celebrate a big birthday - 40 egad! - and had no time to be online. It was great fun - it always is when grandchildren are involved. But I digress. Yes, Marianne, they did a needle biopsy that confirmed clear cell cancer 'consistent' with UPSC. At the time of the original diagnosis I was staged at 1C - but then there was that pesky para-aortic node that turned up right after chemo and promptly disappeared after radiation even though I only had external pelvic radiation. So who knows what the true state of affairs was - or is!
For this new round of chemo I am getting pills for the nausea (Zofran/Ondansetron) to use for days 1, 2 and morning of 3 and and the steroid dexamethasone for days 2, 3 and 4. Of course I also have something for constipation and another drug in case the Zofran doesn't work. Last time I ended up using the Zofran for a longer time - until day 5 - and may do the same again. My stats have always been pretty good - so no neulasta as of yet. Luckily I have not been bothered yet by any of the enlarged nodes - they are all under 2 cm as far as we know. So that is my story to this point. I will have a second infusion this coming Friday and will let you all know how things are going then. Until then, I really appreciate your 'conversation' As we say here in Ottawa (at least those of us who speak French) - mille mercis!

Hi Suzi, I went to high
Hi Suzi,
I went to high school and college in Ottawa but then turned into a snowbird! Glad your treatments are going well. I see a new Dr.next week for thoughts on my next steps.
Annie

daisy366

snowbird_11 said:

Hi Suzi, I went to high
Hi Suzi,
I went to high school and college in Ottawa but then turned into a snowbird! Glad your treatments are going well. I see a new Dr.next week for thoughts on my next steps.
Annie

Annie
Glad you will be seeing someone new - fresh eyes and ideas!!! Keep us posted. Mary Ann

SuziDezi

daisy366 said:

Annie
Glad you will be seeing someone new - fresh eyes and ideas!!! Keep us posted. Mary Ann

Thanks
Thank you gals for your support and encouragement. I too am glad to hear that Annie is going to have another opinion. Because we have a 'team' of doctors here we often get a bit of a different perspective. We don't know who will turn up at any given appointment. I don't like it - makes you feel a bit like a widget on a production line. The good news (we must always look for it, n'est-ce pas?) is that each team doctor does come at the situation with a different set of skills and a different viewpoint.
Where did you go to school Annie? There are days when I wish I too had escaped to sunnier climes. But the summer here usually makes up for the long, cold winter and this past summer was spectacular - so we are still in a happy space and still enjoying unusually nice weather. It all helps to keep us upbeat as I hope your environment does too..