Last treatment ...

orthodoc · 01-31-2013, 05:42 AM

today. A huge relief, even though I will feel no different until 3-4 weeks from now - I'll have the usual post-chemo routine. Since I haven't recovered during these past two cycles I won't expect miracles right away. But knowing there won't be any more poisoning sessions is a huge psychological boost.

I still have a surgery to go, and a follow-up PET/CT to make sure the hot spots they saw last fall have gone away. Assuming all is good, I then face ten years on anti-estrogens. I have a dilemma about tamoxifen, which my onco wants to use (he won't believe my lab results that show I qualify for aromatase inhibitors; says I don't look post-menopausal). A rare complication is retinopathy that produces irreversible damage to vision. I already have had rare complications that have interfered with my vision. And I seem to be the queen of rare complications!

Not to mention all the other nasty side effects - DVT, pulmonary embolus, stroke, joint pain, muscle pain, bone marrow suppression - those are the most common ones. Oh, and cognitive effects.

Aromatase inhibitors don't have the retinopathy issue as far as I can tell, or far less anyway. They cause bad osteoporosis and high fracture risk, worse bone pain, cognitive effects. No clotting issues.

I wish I didn't have to take either one. I'm tempted to refuse. Have to find studies that compare no treatment to treatment, but they'll be old and rare - treatment is standard of care and studies only look at one treatment vs another now. Lots of women stop these drugs because of side effects but I can't find studies on them.

Back to the good part ... last chemo today!!! On to recovery!!!

limey · 01-31-2013, 07:18 AM

Onwards, to Recovery!

glatt · 01-31-2013, 07:38 AM

I'm glad for you that this is the last one. Good luck!

infinite monkey · 01-31-2013, 07:41 AM

Bravo, ortho. You're one tough lady.

Chocolatl · 01-31-2013, 07:48 AM

Hooray for the last treatment! Good luck, ortho.

xoxoxoBruce · 01-31-2013, 08:10 AM

Quote:

Originally Posted by orthodoc

Have to find studies that compare no treatment to treatment, but they'll be old and rare - treatment is standard of care and studies only look at one treatment vs another now.

Don't all the studies have a control group?

DanaC · 01-31-2013, 10:31 AM

*hugs*

Good luck m'dear

orthodoc · 01-31-2013, 10:41 AM

Thank you all for your good wishes! It's a big day. I may even snap a pic.

To answer Bruce's question, once treatment is the standard, the control group will be the current accepted treatment. Researchers won't include a non-treated group for ethical reasons if it's been concluded that treatment is a benefit. You could follow a non-treated group if you got the cooperation of people who refused standard treatment but were willing to otherwise be followed up for the same outcomes as the treated group. No one will do that study when treatment is already felt to be a benefit (although Dean Ornish managed to get control groups of coronary patients who didn't qualify for surgical treatment. It doesn't seem to be done in breast cancer research, though).

The original studies for tamoxifen and the aromatase inhibitors are what I need - how great the actual benefits are. But the control groups wouldn't be broken down into sub-groups that were careful to modify what risk factors they could; the study design would need both groups to be as homogeneous as possible.

I'd like to see how a group would do who refused the anti-estrogens but exercised, lost weight, didn't drink, followed a very low-fat whole food plant-based diet, drank green tea, included curries in their diets (curcumin is important but only works when combined with pepper and other curry spices - capsules don't work), etc. Like the Ornish studies, it would be nice to have one group follow an entire program and follow another group not on the meds but who declined (or were randomized into a control group, ideally) and followed their preferred lifestyle. The 'treatment' group would end up sub-classified according to how much of the program they followed, but also analyzed overall.

It'd be difficult to find subjects - they usually start on meds and then quit due to side effects. The fact they'd been on different meds for different times would be a confounder. It would be very very difficult to get approval for such a study. And funding - even more difficult. But I can dream ...

footfootfoot · 01-31-2013, 11:00 AM

,,

DanaC · 01-31-2013, 11:03 AM

Ha! Nice.

orthodoc · 01-31-2013, 11:10 AM

My post was a horrible example of 'holy massiveness!'. Way TMI, sorry. Sitting here in the infusion center waiting room for 45 minutes and ... yikes.

glatt · 01-31-2013, 11:15 AM

holy massiveness was the size of the image foots first posted. You could see the individual pimples on Buzz's chin.

footfootfoot · 01-31-2013, 11:28 AM

Yeah, I gotta remember to check image size. That was 19" across

Trilby · 01-31-2013, 02:59 PM

ortho-I will never forget my last chemo treatment.

god bless and follow your gut.

I will tell you this": after chemo I could no longer write legibly and It's difficult to keyboard. Also, I've gone thru menopause twice. And Im more depressed than ever feeling like a 70 year old in a 48 year old body.

I DID to to a foot doc who helped me a lot with calf pain post chemo (I would hobble like a 90 year old until about 2pm) and I'm still fooking tired.

I want to be a vegetable. I don't care which one...maybe a yam.

orthodoc · 01-31-2013, 04:04 PM

I hear you. I feel like chemo has taken ten years from me - I hope my energy level returns, but if I do the anti-estrogen meds I'll have the bone and joint pain to look forward to. Not pessimistic, just realistic. Since my onco has warned me repeatedly about it, it will be an issue. He's otherwise very close-mouthed about side effects.

I'm going to lose all my fingernails, ironically AFTER I finish treatment. Nothing to be done. So far my neuropathy is all sensory, not motor, so I hope it stays that way after this final session.

I hear you.
If you don't mind my asking, did you decide to go on tamoxifen?

01-31-2013, 05:42 AM	#1
orthodoc Not Suspicious, Merely Canadian Join Date: Oct 2006 Posts: 3,774	Last treatment ... today. A huge relief, even though I will feel no different until 3-4 weeks from now - I'll have the usual post-chemo routine. Since I haven't recovered during these past two cycles I won't expect miracles right away. But knowing there won't be any more poisoning sessions is a huge psychological boost. I still have a surgery to go, and a follow-up PET/CT to make sure the hot spots they saw last fall have gone away. Assuming all is good, I then face ten years on anti-estrogens. I have a dilemma about tamoxifen, which my onco wants to use (he won't believe my lab results that show I qualify for aromatase inhibitors; says I don't look post-menopausal). A rare complication is retinopathy that produces irreversible damage to vision. I already have had rare complications that have interfered with my vision. And I seem to be the queen of rare complications! Not to mention all the other nasty side effects - DVT, pulmonary embolus, stroke, joint pain, muscle pain, bone marrow suppression - those are the most common ones. Oh, and cognitive effects. Aromatase inhibitors don't have the retinopathy issue as far as I can tell, or far less anyway. They cause bad osteoporosis and high fracture risk, worse bone pain, cognitive effects. No clotting issues. I wish I didn't have to take either one. I'm tempted to refuse. Have to find studies that compare no treatment to treatment, but they'll be old and rare - treatment is standard of care and studies only look at one treatment vs another now. Lots of women stop these drugs because of side effects but I can't find studies on them. Back to the good part ... last chemo today!!! On to recovery!!! __________________ The greatness of a nation and its moral progress can be judged by the way its animals are treated. - Ghandi

01-31-2013, 07:18 AM	#2
limey Encroaching on your decrees Join Date: Feb 2004 Location: An island within the south-west coast of Scotland Posts: 7,016	Onwards, to Recovery! __________________ Living it up on the edge ... of civilisation, within the southwest coast of

01-31-2013, 10:41 AM	#8
orthodoc Not Suspicious, Merely Canadian Join Date: Oct 2006 Posts: 3,774	Thank you all for your good wishes! It's a big day. I may even snap a pic. To answer Bruce's question, once treatment is the standard, the control group will be the current accepted treatment. Researchers won't include a non-treated group for ethical reasons if it's been concluded that treatment is a benefit. You could follow a non-treated group if you got the cooperation of people who refused standard treatment but were willing to otherwise be followed up for the same outcomes as the treated group. No one will do that study when treatment is already felt to be a benefit (although Dean Ornish managed to get control groups of coronary patients who didn't qualify for surgical treatment. It doesn't seem to be done in breast cancer research, though). The original studies for tamoxifen and the aromatase inhibitors are what I need - how great the actual benefits are. But the control groups wouldn't be broken down into sub-groups that were careful to modify what risk factors they could; the study design would need both groups to be as homogeneous as possible. I'd like to see how a group would do who refused the anti-estrogens but exercised, lost weight, didn't drink, followed a very low-fat whole food plant-based diet, drank green tea, included curries in their diets (curcumin is important but only works when combined with pepper and other curry spices - capsules don't work), etc. Like the Ornish studies, it would be nice to have one group follow an entire program and follow another group not on the meds but who declined (or were randomized into a control group, ideally) and followed their preferred lifestyle. The 'treatment' group would end up sub-classified according to how much of the program they followed, but also analyzed overall. It'd be difficult to find subjects - they usually start on meds and then quit due to side effects. The fact they'd been on different meds for different times would be a confounder. It would be very very difficult to get approval for such a study. And funding - even more difficult. But I can dream ... __________________ The greatness of a nation and its moral progress can be judged by the way its animals are treated. - Ghandi

01-31-2013, 11:00 AM	#9
footfootfoot To shreds, you say? Join Date: Aug 2004 Location: in the house and on the street-how many, many feet we meet! Posts: 18,449	,, Attached Images __________________ The internet is a hateful stew of vomit you can never take completely seriously. - Her Fobs

01-31-2013, 11:10 AM	#11
orthodoc Not Suspicious, Merely Canadian Join Date: Oct 2006 Posts: 3,774	My post was a horrible example of 'holy massiveness!'. Way TMI, sorry. Sitting here in the infusion center waiting room for 45 minutes and ... yikes. __________________ The greatness of a nation and its moral progress can be judged by the way its animals are treated. - Ghandi

01-31-2013, 07:38 AM	#3
glatt ™ Join Date: Jul 2003 Location: Arlington, VA Posts: 27,717	I'm glad for you that this is the last one. Good luck!

01-31-2013, 07:41 AM	#4
infinite monkey Person who doesn't update the user title Join Date: Mar 2011 Posts: 13,002	Bravo, ortho. You're one tough lady.

01-31-2013, 07:48 AM	#5
Chocolatl Glutton for Gluttony Join Date: Oct 2007 Location: Tampa, FL Posts: 1,409	Hooray for the last treatment! Good luck, ortho.

01-31-2013, 11:15 AM	#12
glatt ™ Join Date: Jul 2003 Location: Arlington, VA Posts: 27,717	holy massiveness was the size of the image foots first posted. You could see the individual pimples on Buzz's chin.

01-31-2013, 11:28 AM	#13
footfootfoot To shreds, you say? Join Date: Aug 2004 Location: in the house and on the street-how many, many feet we meet! Posts: 18,449	Yeah, I gotta remember to check image size. That was 19" across __________________ The internet is a hateful stew of vomit you can never take completely seriously. - Her Fobs

01-31-2013, 02:59 PM	#14
Trilby Slattern of the Swail Join Date: Jul 2004 Posts: 15,654	ortho-I will never forget my last chemo treatment. god bless and follow your gut. I will tell you this": after chemo I could no longer write legibly and It's difficult to keyboard. Also, I've gone thru menopause twice. And Im more depressed than ever feeling like a 70 year old in a 48 year old body. I DID to to a foot doc who helped me a lot with calf pain post chemo (I would hobble like a 90 year old until about 2pm) and I'm still fooking tired. I want to be a vegetable. I don't care which one...maybe a yam. __________________ In Barrie's play and novel, the roles of fairies are brief: they are allies to the Lost Boys, the source of fairy dust and ...They are portrayed as dangerous, whimsical and extremely clever but quite hedonistic. "Shall I give you a kiss?" Peter asked and, jerking an acorn button off his coat, solemnly presented it to her. —James Barrie Wimminfolk they be tricksy. - ZenGum Last edited by Trilby; 01-31-2013 at 03:04 PM.

01-31-2013, 04:04 PM	#15
orthodoc Not Suspicious, Merely Canadian Join Date: Oct 2006 Posts: 3,774	I hear you. I feel like chemo has taken ten years from me - I hope my energy level returns, but if I do the anti-estrogen meds I'll have the bone and joint pain to look forward to. Not pessimistic, just realistic. Since my onco has warned me repeatedly about it, it will be an issue. He's otherwise very close-mouthed about side effects. I'm going to lose all my fingernails, ironically AFTER I finish treatment. Nothing to be done. So far my neuropathy is all sensory, not motor, so I hope it stays that way after this final session. I hear you. If you don't mind my asking, did you decide to go on tamoxifen? __________________ The greatness of a nation and its moral progress can be judged by the way its animals are treated. - Ghandi

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