Life on Taxotere - 1248028

judys
Posts:74

Report time-- I had #4 taxotere today. This week's CT scan was a mixed bag. The lung nodules are either a little smaller or the same - good. The pericardial effusion is unchanged, the hilar LN not significantly changed, T12 lytic lesion unchanged - good, good and good.

The not so good parts:
There's a moderate sized PE after having one drained in early July. It isn't causing any coughing or discomfort yet.
"The probable left-sided pleural based metastases are slightly worse." One grew from 2 x.9 cm to 2.4 x 1.2 cm; the other from 1 x 1.6 cm to 1.5 x 1.9. There is also a third one starting to show. I haven't had much luck in finding info about pleural masses but will keep looking.

Taxotere is not giving me any real problems. In fact I feel quite good for two weeks. I am taking glutamine again and have no neuropathy. But just like with taxol I don't know if that's the reason. My blood work this time was great - only 1 flag for (barely) low albumin.

The plan is to do two more infusions, scan, take a break for a few months, scan again. We're in discussion about doing a biopsy of the pleural masses during that time.

I also had a brain MRI this week. All was clear - yippee - and I guess the dizziness is really the BPPV (vertigo) I was diagnosed with in April. When headaches were added to the mix I was getting concerned. That probably is a recurrance of a neck issue I had about 10 years ago. It's no doubt because of couch slouching. I've been so good about that over the years, but when I got tired with these infusions, the poor posture and resting on the couch without much thought to my neck's position started. Back to neck exercises!

I also had a port put in a while back. I should have done it when I started infusions again in October as recommended. Oh well. I find it so much easier than all the arm pokes.

Since I have a few characters left I'll mention that I walked the Tacoma Free to Breathe 5K Saturday - in under an hour!

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Reply # - September 14, 2012, 06:35 PM

double trouble
Posts: 573

Hi Judy. I'm glad you're doing well. I had the understanding that the taxanes were particularly rough. I know what you mean about the couch slouching and having to go back to previous exercise programs.

Congratulations on the 5k. We have a Free to Breathe coming up here soon, November I think. I hope I'm up to it this year.

You're an inspiration, and I'm so glad there is good news mixed in there, and that you seem so able to focus on it. I think that is one reason why some of us seem to fare better than others. Thanks for the update. I had noticed you weren't around much anymore. Good to hear from you.

Much love,
Debra

Reply # - September 14, 2012, 08:04 PM

Dr West
Posts: 4735

That mixed bag sounds pretty good -- more good than bad, I think, and the plan of a couple more cycles and then a break sounds like a very fine one.

Our own GRACE 5K was a wake-up call for me, health-wise, and I'm actually running 3-5x every week now, in hopes of being able to actually RUN a 5K by next spring/summer (I'm up to two consecutive 9 minute runs with just a few minutes of walking in between, which is getting close to the final weeks of my "couch potato to 5K" training transition).

Please do keep us posted on your progress, Judy!

-Dr. West

Reply # - September 15, 2012, 03:32 AM

certain spring
Posts: 762

I too am glad to hear from you, Judy, and to know that the Taxotere is proving manageable and the MRI was OK. Congratulations on your very brisk-sounding 5km!

Reply # - September 15, 2012, 12:52 PM

Jazz
Posts: 279

Judy,
It sounds like mostly good news and the fact that you're feeling well and moving about is tremendous! Wishing you more good spirits and strength for the upcoming cycles. I'm currently wondering if my father should go on Taxotere for second line or Gemcitabine. It's always heartening to hear "no neuropathy" and that bloodwork is good.

Keep it up and hang in there!

Jazz

Reply # - September 15, 2012, 05:09 PM

dr walko
Posts: 102

Congratulations Judy, glad the Taxotere is treating you so well! I'm always interested in patient reports on glutamine to prevent neuropathy, my experience has been very mixed but there is data to support it's use and if you don't mind taking the 30g per day powder then probably nothing to loose. One other piece of advice from my patients who have been on Taxotere for a while (one of my patients just did cycle 14) is to start using nail hardener polish at the very first sign of any nail changes...this seems to be a side effect that can pop up after being on the drug for a while and is more bothersome than painful or anything else, but a little prevention may keep the bothersome away!

Hope things continue to go well, I also just signed up for the Raleigh Free to Breathe event and can bet that your finishing time is better than anything I could do! (Now a Free to Breathe Swim may be another story...)

Take care,
Dr. Walko

Reply # - September 16, 2012, 05:20 PM

laya d.
Posts: 714

YAYYYYYY Judy!!! Thanks for the report. . .and I am looking forward to your break from chemo!!!

xoxo,
Laya

Reply # - September 17, 2012, 08:53 AM

judys
Posts: 74

Thanks everyone for your good wishes....And Dr Walko, I appreciate the tip about the fingernails. No issue yet on that front but good to have a plan in mind! I was also interested in someone having 14 treatments of taxotere. I always hear about stopping after 6 (though I did have a total of 10 taxol treatments years ago). As the number of drugs still available to try dwindles, it's good to know I can extend its use if feasible.

I'm impressed, Dr West, with your running regimen! I can see it now --- At the next GRACE run/walk, you'll be at the finish line waiting for us slow walkers to finally arrive......

Reply # - November 19, 2012, 03:45 PM

judys
Posts: 74

I had a scan last week after completing taxotere #6 three weeks earlier. Good results - stable disease with shrinkage - yes, shrinkage for the first time since carbo/taxol in 2008! - in the right lung nodules. I'm now starting a two month break which gets me through the holidays and a trip to NYC in early January. Great timing!

Earlier this year when a break was suggested, I went along reluctantly. This time I readily agreed. The last two infusions took their toll and I'm anxious to feel more energetic and hopefully get rid of my red watery eyes and the mild neuropathy in my feet. A little hair would be nice too!!

My oncologist and I talked about doing a biopsy when something is actively growing again, returning to taxotere after a decent period of time passes (she mentioned at least 6 months) but using gemzar or navelbine as needed in the meantime. I always want a general plan of what might come next and now I have that.

So I'm feeling even more thankful than usual this week! Plus my husband and I just got home from helping my parents celebrate their 74th wedding anniversary today. How special is that?!?!

Reply # - November 19, 2012, 04:05 PM

Dr West
Posts: 4735

Judy,

ALL of that is wonderful news. I am very impressed that you saw shrinkage, which we just can't expect to see in someone who has been on treatments for years, but it's wonderful if you break that particular rule.

I'm happy you get to enjoy a drug holiday along with the Thanksgiving holiday, and that you have so much to be thankful for. Congratulations to your parents as well...that's amazing!

-Dr. West

Reply # - November 19, 2012, 04:11 PM

ssflxl
Posts: 204

Judys

That's wonderful news. Now you can really relax and enjoy the holidays!!!

ssflxl

Reply # - November 20, 2012, 01:19 PM

laya d.
Posts: 714

YAHOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOO!!!!! Best news ever, Judy. . .

But even more impressive than the shrinkage is the fact that your parents have been married for 74 years!!!! WOW WOW WOW!!! My best to them and to you. . .

xoxoxoxo x a million. . .
Laya

Reply # - November 20, 2012, 04:01 PM

judys
Posts: 74

Thanks for the good wishes---- The largest right lung nodule went from 17 mm to 12 mm so we aren't talking huge changes but hey, who cares?! And some of the small ones are no longer visible on the scan. I remember when Ned had shrinkage on Navelbine and what a surprise that was.

Laya, I'll be interested in how your mother does on gemzar. That is on my short list--- but I know we all respond so differently to these chemos.

As to my parents, the three of us hope we'll all be around for their 75th. They have their "issues" at 96 and 95 but do quite well overall...... And I've probably mentioned before that I have a 101 year-old mother-in-law..... It's pretty amazing all the way around.

Reply # - January 18, 2013, 05:04 PM

judys
Posts: 74

I thoroughly enjoyed my time off treatment and had a great time in NYC, but we're now back to deciding what's next. My scan this week showed growth in the lung nodules. The one that shrank to 12mm is now about 20mm. Unfortunately it is located near the center of my chest so I'm waiting to see if it might be able to be biopsied. That would give me a chance to see if I really am EGFR positive or if there's an ALK mutation or----.

I unfortunately have a compression fracture of T12 which is causing pain but nothing too bad. I did get a prescription for hydrocodone today and will see what happens with that. Constipation is not my friend so I'll try to take as small a dose as possible!! The pain that bothers me most is in my hip. It comes and goes and could be referred pain from the spine I suppose. I will start Zometa when I begin the next chemo treatments. (As an aside I was diagnosed with osteoporosis of the spine in 2001 and took Actonel until 2009.)

What chemo to use is the sticking point. Right now I'm leaning toward going back to taxotere. It's been three months (10/26/12) since my 6th infusion, my blood work is all fine, my fatigue is alot less, the neuropathy I felt is gone, I'm still wearing hats so going bald isn't a big deal and taxotere did cause some shrinkage of the nodules.

The other choices we talked about were carbo/navelbine and carbo/gemzar. My onc mentioned them both as doublets which surprised me. I had 10 carboplatin infusions in 2007 so I suppose the time lapse makes it ok. But would the combo be that much better than the single agent when considering side effects?

I turned 70 last month and will celebrate 6 years since this LC was found on Jan. 29, 2013. All in all I'm very lucky - as least in the world of cancer.

As I've said before, I follow everyone but just don't post often. Know I'm smiling, crying, swearing right along with all of you!

Reply # - January 18, 2013, 09:31 PM

Dr West
Posts: 4735

Judy,

I'm sorry to hear about your progression. How much added value the doublet would provide over single agent is really an unknown, but there is still a very real risk of a hypersensitivity reaction to the carboplatin after many cycles, even years apart. The evidence on 2 vs. 1 drug in the second line or later setting doesn't show a survival benefit with a doublet, but that's also not looking at people who are out >5 years, which may well be a separate population with different rules (or who at least don't necessarily adhere to the same rules as most people with advanced NSCLC).

Either way, while I'm sorry you're facing going back on treatment, it's great that you have options and have shown a response to treatment even years out from the first treatment. That's quite unusual but great to hear.

Good luck!

-Dr. West

PS: Your shamefully late thank you letter went out today (late because I really wanted to send you a more personal note for your wonderful support of GRACE in so many ways over the years). Let me also thank you here. We are profoundly, deeply grateful.

Reply # - January 18, 2013, 11:31 PM

laya d.
Posts: 714

My Judy . . .

Thank you so much for your update and I'm sorry to read about the progression. Lots of options out there. . .I hope whatever treatment road you end up on allows for as little side-effects as possible, and that you continue to feel pretty good.

I have you very close to my heart. . .

Laya

P.S. YAYYYYYYYYYYYY on being 6-years out! Whoooo Hoooo!

Reply # - February 12, 2013, 04:13 PM

judys
Posts: 74

I guess I can just keep my thread title because yesterday I went back on taxotere. We're aiming for three infusions; then scan. Zometa was added too.

I was able to have a biopsy and the tissue has been sent out for mutation testing. I didn't want to wait for the results since I get anxious being off treatment (3 1/2 months this time) and I did have positive results after my 6 earlier taxotere treatments.

The biopsy was taken from T12. Not great that there's that much cancer there but at least tissue could be obtained somewhere.

Last week's bone scan didn't show much that explained my back and hip area pain. Age, arthritis - who knows. It's manageable so far anyway. There's some activity around the 10th rib where I had pain and radiation in October 2011.

And so it continues - now in my 6th year of living with this stuff!!

Reply # - February 12, 2013, 04:38 PM

double trouble
Posts: 573

Good luck Judy. At least you know what you're in for. I'm sorry you're experiencing pain. I know you've heard this before, but I'll repeat it anyway. If you find something that works, stay on it. Getting and staying ahead of pain is much easier than trying to get rid of it after it starts. You are always in my heart, and always an inspiration to keep going.

Debra

Reply # - February 12, 2013, 04:39 PM

catdander
Posts:

Judy, I'm glad to hear you're moving into your 6th year living with this stuff. and Hope that taxotere will be doable and effective for a little while.
It's so good to know you are there laughing swearing and crying with us. Really. and I'm keeping you close also.
Janine

Reply # - February 12, 2013, 04:51 PM

catdander
Posts:

Oh yes, I wanted to say, be sure to stay on top of a good anti constipation regimen. Something like senna plus that has a mild natural laxative and stool softening (both) is important. Very similar to what Debra said about staying ahead of the pain.

I'm sure you are but just in case you or someone else reading this isn't aware of Dr. Harman's posts on the subjects, she covers both ideas, not waiting for the pain to get really bad and starting an anti constipation regimen upfront, http://cancergrace.org/cancer-treatments/2012/07/28/dr-harman-on-cancer…

Reply # - February 12, 2013, 08:25 PM

Dr West
Posts: 4735

I just want to wish you luck again and say that I'm thinking of you. Nobody would want to be living with cancer, but I think any time we can change an immediately fearsome, deadly disease into a more chronic one, it's a big step in the right direction.

Good luck this time around.

-Dr. West

Reply # - February 12, 2013, 09:51 PM

judys
Posts: 74

Thanks everyone.... I'm actually just starting my 7th year. How could I screw that up!!

Warrior princess and I had quite the discussion about constipation some years back. I definitely know what to do and have all my pills, powders and tea at the ready. I just have to adjust them with where I am in the treatment cycle - on dexa, nausea pills, pain pills, glutamine etc. I've been keeping a daily log which really helps when I need to look back to see what I took and how much at the different stages. It's just that it gets really old---- and I feel like my elderly parents who can get obsessed with their bowels!

Seriously, the pain issue isn't that big a deal now. Again I've noticed that when it raises its ugly head, I should sit for a while or rest on my Tempur-pedic bed. Then I'm good to go for awhile longer. Walking alot doesn't seem to be an issue. Standing in one spot isn't the best.... I also restarted fish oil and glucosamine to see if they help. I had a spell when I was so tired of taking pills, I just stopped a few OTC ones. I'll take a hydrocodone if I know I'll probably need something when away from home.

Reply # - February 14, 2013, 08:04 PM

laya d.
Posts: 714

Good Luck, Judyyyyyyyyy! I also am keeping you very very very close. . .

xoxox,
Laya

Reply # - March 9, 2013, 04:59 PM

judys
Posts: 74

Hi - Had my 8th taxotere infusion yesterday. We'll scan after #9 and hope to see some shrinkage like we did before my treatment break. If so I'll try to continue with taxotere. If not we'll probably go to gemcitibine. Even though I felt pretty rocky for about a week last time, I rebounded well so had a few good weeks.

By the way, my rebiopsy confirmed an EGFR mutation - exon 20 with T790M. I was disappointed they didn't test for ALK but guess when they get EGFR, they stop. Both were ordered. Oh well, it would have been unusal I know to find one.

I'm having trouble updating my signature today but will do it!

Reply # - April 20, 2013, 01:26 PM

judys
Posts: 74

Hi All --- This can be short -- My scan this week shows all is stable... Now "all" includes Innumerable nodules in both lungs, a moderately large pleural infusion, multiple pleural-based nodules and a fracture in T12. But I really am doing well. Some fatigue, a little neuropathy.

I had taxotere #10 yesterday. We'll scan again after number 12. Another break will probably happen then....Since I was told by a LC specialist that EGFR mutants tend to do well on taxanes - they don't know why - I'm more motivated to stick with it as long as I can. Who needs hair anyway?! I did well on taxol early on and the same has been true with taxotere. Returning to Tarceva is on the future list too.

As always I feel very fortunate to receive these results after all these years.

Reply # - April 20, 2013, 02:19 PM

dr walko
Posts: 102

Congratulations Judy!

One bit of advice from my patients who start to get into double digits with Taxotere is to start using a nail hardener polish on your finger nails. I have a few patients who had a lot of nail problems only after several doses and a hardener helped to keep the breaking to a minimum.

Best wishes,
Dr Walko

Reply # - April 20, 2013, 05:59 PM

Dr West
Posts: 4735

That's wonderful, but it sounds like your break will be well earned. Even people who we think of as tolerating Taxotere (docetaxel) well don't often get through 10-12 rounds. It's not necessarily the hair as much as the cumulative fatigue, nail changes, sometimes neuropathy, slow recovery of blood counts, etc. You're pretty modest for someone who must have some tenacity in her to sign on for more.

Congratulations!

-Dr. West

Reply # - April 21, 2013, 01:21 PM

judys
Posts: 74

Thanks, Dr Walko - I'm now the owner of nail-hardening polish. I had nail changes after my first 6 infusions but nothing that was troublesome and all returned to normal during my break. Don't want to press my luck though.
Dr. West, My blood counts remain good. The only flags this time were high glucose, which seems to occur when blood is drawn when I'm on dexa, and high neutrophils.
Thanks for your comments.

Reply # - April 21, 2013, 01:34 PM

certain spring
Posts: 762

Can one get it in exotic colours? I am reaching that stage in my life when I think, what the hell, I shall wear orange if I want to ...

Reply # - April 21, 2013, 01:58 PM

catdander
Posts:

thanks for the tip Dr. Walko! and thanks for keeping up with this thread, you're the greatest!

Congrats Judy!

Next to my lighted corner I have a growing stash of exotic nail colors. I was 30 before I wanted to wear a dress or consider pink an option anywhere in my life. Mid forties I started wearing nail polish now I have a collection. So yes cs, I think you've reached that stage. Not to mention you should do any darmn thing like that you want.

Reply # - April 21, 2013, 08:19 PM

Dr West
Posts: 4735

Judy,

The high blood sugars and high neutrophils are well known effects of steroids like dexamethasone, as you may already know.

-Dr. West

Reply # - June 29, 2013, 01:42 PM

judys
Posts: 74

Hi all - Guess I never reported the results of my biopsy on this thread........No surprise that they found an EGFR mutation on exon 20 with T790M acquired resistance.

Also the back pain was just old age degenerative stuff that can come and go. I tend to think I can still lift heavy objects!

After three more taxotere infusions my latest CT scan showed basically stable disease. There might be a few mm growth in a few areas, but nothing that will stop me from taking a two month break.

At yesterday's appt we talked about afatinib, Tarceva again or ???? As my onc said there are no real guidelines for outliers like me. Not a bad spot to be in-----

Reply # - June 29, 2013, 03:05 PM

Jazz
Posts: 279

That's wonderful, Judy. Enjoy your summer and I hope you can do the Tarceva-chemo dance for a long time to come (it appears you haven't used Tarceva since 9/11?).

Reply # - June 29, 2013, 03:06 PM

Jazz
Posts: 279

Oh oops, I just re-read and saw the T790m part... well, maybe Afatinib or CO-1686? Is there a trial site somewhere near you? Very minimal side effects I hear.

Reply # - June 29, 2013, 06:17 PM

Dr West
Posts: 4735

I don't have experience with CO-1686, but I wouldn't say that afatinib is free of side effects -- they tend to be more common and severe than what we see with Tarceva (erlotinib) or Iressa (gefitinib).

I agree that there's no real precedent for your situation, so it requires an individualized approach and careful judgment. I think the general strategy of trying to administer the least treatment necessary to keep things under control over time is an ideal strategy, so treatment breaks make good sense when disease is stable.

Congratulations!

-Dr. West

Reply # - June 29, 2013, 09:10 PM

Jazz
Posts: 279

I meant to edit that last post but was called away. Yes, afatinib side effects can be quite severe (that's saying something, coming from me). But I hear CO-1686 is refreshingly the opposite, however there are waiting lists. Which might be ok since you're on a tx break!

Best,
Jazz

Reply # - June 30, 2013, 10:20 PM

laya d.
Posts: 714

Thanks for the update, Judy. . .It's so nice to read "outlier" and STABLLLLLLEEEEEE!!! Whooooooooo Hooooooooooooo!

xoxo,
Laya

Reply # - September 20, 2013, 07:47 PM

judys
Posts: 74

I've been meaning to update what I'm doing now, but things other than LC have taken over my life the last month. (I have a 97 yo father and a 96 yo mother in an asst living facility 25 mi away. My father's short term memory was already an issue but the stress of seeing his wife of 75 years bedridden after a nasty fall has exacerbated it big time. I think you get the picture!)

In mid-August I had 700 ml of fluid drained from my left lung. There's an area of loculated fluid left. My scan after a two month treatment break showed an increase in the size and number of lung nodules. The pleura and T12 areas were stable.

I have now returned to Tarceva. So far, so good side-effects wise. I've been able to stop taking hydrocodone at night for back and hip pain.

I have the paperwork for the MPDL3280A (Genentech Anti PDL1 Phase 2) trial. They're seeking insurance approval and checking on how much archived tissue I have. This gives me the time to see if Tarceva will keep me stable. The trial is expected to be recruiting for about 9 months so time isn't an issue yet.

Basically I just keep plugging along!!!

As always thanks to Dr West, all the other drs and Janine and Jim.

Reply # - September 20, 2013, 09:41 PM

double trouble
Posts: 573

I would say that "plugging along" for 6 years is quite an accomplishment! You always amaze me. I hope the Tarceva keeps you stable too, and good luck with the trial if you get on board with that. I hope your pain remains controlled as well. It is nice to hear an update from you.

I'm sorry you're having to deal with your parents. You need support yourself. I hope things settle down with them as they adapt to their environment. I wonder sometimes how I would do in an assisted living situation. I think it would be hard giving up my independence. It must be hard watching them go through this. You will be in my thoughts.

Keep Plugging!

Debra

Reply # - September 22, 2013, 09:57 PM

laya d.
Posts: 714

Thanks so much for the update, Judy! I have you in my thoughts all the time. . .and glad that you're doing relatively good. My best to you always. . .

xoxo,
Laya

Reply # - September 23, 2013, 05:41 AM

marisa93
Posts: 215

So good to hear from you Judy and glad to hear you are "plugging along"! I hope the Tarceva keeps you stable until you find out about trial and that can take over! Good that you've been able to stop hydrocodone at night, may the pain continue to stay away!

On the flip side, I am very sorry to hear about your parents. That's tough to deal with:(

Take care,
Lisa

Reply # - September 23, 2013, 06:57 AM

JimC
Posts: 2753

Good to hear from you, Judy. You are a great inspiration as an example of someone who keeps lung cancer at bay with a variety of treatments and a terrific attitude. I hope you get great benefit from Tarceva and any subsequent therapies.

JimC
Forum moderator

Reply # - September 23, 2013, 07:50 PM

Dr West
Posts: 4735

Judy,

It's great to hear from you. I hope you get the opportunity to participate in the upcoming trial and wish you great luck with it.

I was in your neighborhood and thought of you. I look forward to seeing you again.

-Dr. West

Reply # - September 24, 2013, 03:30 PM

judys
Posts: 74

Thanks everyone! I heard yesterday that my insurance ok'd me for the trial. The remaining tissue from my original biopsy is being sent to a lab where if there's enough available, it will be checked for the PD-L1 marker. If not I'll need to do another biopsy. Having the marker is of course the first requirement . Time will tell.

Dr West, thanks for coming to our lung cancer support group last month. Time was tight for you with the tweet chat that afternoon, but everyone appreciated you extending your busy day into the night!!

Reply # - September 24, 2013, 06:25 PM

Dr West
Posts: 4735

My pleasure...I probably would have been bored otherwise.

And good luck with the trial.

-Dr. West

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