Update Re Laya's Mom - 1245406

laya d.
Posts:714

Hi Friends:

My Mom's chest CT shows stability, and maybe even a little shrinkage in one of the nodules in her left lung. So, we are now done with the carbo/alimta combo and have moved on to single agent maintenance Alimta. She had her first dose of maintenance Alimta today. My Mom is battling a lot of fatigue at the moment. . .so her doc is going to see if she can get Provigil or Nuvigil approved. I guess its hard to get these drugs approved for chemo-induced fatigue. If not, I have a rheumatologist friend who said that she can give us a boat-load of samples. . .

Anyway, thank you all for your well-wishes. . .and my continued love to you all. . .

Laya

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Reply # - July 19, 2012, 12:33 AM

JimC
Posts: 2753

Hi Laya,

That's terrific news! Stability is great, and so is dropping the carbo, which should result is lower toxicity. I'm so happy for your Mom, and you, and your whole family!

Wooooooo Hoooooooo!

JimC
Forum Moderator

Reply # - July 19, 2012, 01:32 AM

certain spring
Posts: 762

I found carboplatin completely exhausting, so hopefully by dropping it she might regain some energy.

Reply # - July 19, 2012, 07:06 AM

marisa93
Posts: 215

Hi Laya and Mom,

Stability is wonderful news, YAAAAAYYYYYY!!!!!!! I hope the fatigue begins to lessen now! Take care:)

Lisa

Reply # - July 19, 2012, 07:10 AM

catdander
Posts:

Dear Laya,

Congratulations on stable! YAY and maybe shrinkage! Woopee! I hope your mom can stay on alimta for a long long time without problems.

I’m going to add to the chorus of well wishing and say it's so possible the carbo has been a BIG culprit of your mom’s fatigue. It absolutely wiped D out. He just could not get out of bed sometimes. Here’s to hoping less does the trick. But glad you have access to an alternative if needed.

lots of love,
Janine

Reply # - July 19, 2012, 07:40 AM

fortmyr
Posts: 128

Laya, what great news! Stable is really good. I hope your mom will tolerate Alimta much better than carbo and that she'll bounce back rapidly.

Myriam xxx

Reply # - July 19, 2012, 08:59 AM

aunttootsie001
Posts: 324

Laya, so Happy to here about the stability! Any Good News is better than None! I find walking helps me with Fatigue if she's able? God Bless and looking forward to more Good News!

Reply # - July 19, 2012, 07:09 PM

Jazz
Posts: 279

Hurray for Mom! Here's hoping her energy will return shortly so she can enjoy more summer fun! (It's nice to have friends with samples ;)

Jazz

Reply # - July 19, 2012, 09:17 PM

Dr West
Posts: 4735

Laya,

Sorry I missed this until now (too many ongoing well-wishers keeping your threads at the top of the list of recent posts), but I'm happy to add my congratulations on her stability + shrinkage. Great news!

It's tough to get the balance right on pushing against the cancer but not overwhelming the patient. I certainly have a bunch of patients who have had an easier time with single agent chemo than the platinum-based doublet. I hope your mother finds the maintenance chemo easier and is up and around more soon.

-Dr. West

Reply # - July 20, 2012, 03:04 PM

jane
Posts: 2

Laya,

I'm so happy that your mom has had positive results from her chemo. That carboplatin is really tough. I was so glad when I was done with the triplet I had but it worked.

I don't know how Dr. West feels about ginseng for fatigue in patients who are on chemo and those that have finished a course and still have major fatigue. I was just recently given an article about ginseng. Briefly Mayo Clinic researchers found that after eight weeks of receiving 2000 miligrans of ginseng daily that 340 patients showed a significant decrease in exhaustion. sixty percent of the patients had breast cancer. Researchers used capsules with pure ground American ginseng root for the study because store bought ginseng can be processed wih ethanol.

The patients were either receiving chemo or had just completed a course of treatment. Dr. Chun-Su- Yuan who directs the Tang Center for Herbal Medicine Research at the University of Chicago said he was excited by the findings.The study results were presented at an American Society of Clnical Oncology meeting in Chicago in June.

I haven't brought this to the attention of my oncologist yet but I certainly will. Maybe Dr. West can comment on this study. If it really works it would be a miracle for so many cancer patients fighting this side effect.

I hope your mom starts feeling better soon.

Jane

Reply # - July 20, 2012, 09:57 PM

Dr West
Posts: 4735

I don't have much insight on ginseng but really don't have significant objections about it. I'd want to learn more about it before saying much. I don't know of any interaction with anti-cancer therapies, either good or bad.

-Dr. West

Reply # - July 21, 2012, 03:36 PM

sleepless in jersey
Posts: 100

Laya so happy for you and your Mom that is just wonderful!!
Enjoy every moment of it :-)
Sleepless

PS- Provigil I'm sure it doesn't happen to a lot of people, but they took my Uncle off provigil (he doesn't have cancer) the side effects he had almost all of them, but it took them mos to figure it out that it was that causing his irritability, diarrhea, feistyness etc...

Reply # - July 22, 2012, 06:51 PM

anita l
Posts: 5

Laya- I am so happy for your Mom. Hopefully she will feel much better after maintenance on Alimta. Even though we had tough news last time for Gary, I am so grateful for our terrific care and doctors. We switched to the radiologist that your Mom has and we are very happy. Hope you and your Mom can stay away from COH for a while...because she is feeling great!

Reply # - July 24, 2012, 11:02 AM

tanny
Posts: 16

Hi Laya, that's good news, and I hope you and the rest of your family are keeping well.

I haven't been posting on here in ages, but I still stop by every other day. So glad to see familiar names and faces still posting, and many new ones too. Like I've said before, take it one day at a time and enjoy the little moments that make life so amazing.

My best to you and everyone else!
tanny

Reply # - July 27, 2012, 09:18 PM

cpmcg
Posts: 4

Hi, Laya,
I haven't been reading posts on GRACE for awhile (too busy hanging out with my new grandson!), so I just saw your post about your mom, and want to add my heartfelt YAYs!!!!
My carbo/alimta fatigue took a while to abate, but it did, so I'm crossing fingers for your mom,too.
Hope to get together with you before summer is over!
Candy

Reply # - July 27, 2012, 10:15 PM

laya d.
Posts: 714

Hi Everyone:

Another quick update. . .my Mom's brain MRI results from yesterday were "great" according to her brain surgeon. He said that the two tiny brain mets that were gamma knifed 2 mos. ago look like they are shrinking, and nothing else to report. We are very happy!

Thank you all for your continued love and support. . .and Candy, I would LOVE to get together before summer is over. I will e-mail you so we can plan it.

Much Love,
Laya

Reply # - July 27, 2012, 10:50 PM

catdander
Posts:

Lots of people have said D and I deserve his break and good luck. Fact is everyone does. Congratulations for your mom's good results. I know how much relief your mom and family are feeling today, make it last and last. Much love,
Janine

Reply # - July 28, 2012, 01:30 PM

double trouble
Posts: 573

HAPPY HAPPY HAPPY DANCE!!!

What wonderful news, Laya. If anyone deserves some good news it is the two of you! Much love and respect to you both.
Debra

Reply # - July 28, 2012, 03:52 PM

laya d.
Posts: 714

Thanks everyone.

Also, we managed to get a prescription for Provigil. . .which my Mom began taking on Tuesday. I hope that it will help boast her energy level and fight fatigue.

Jim: do you remember how much time passed before Liz began feeling the beneficial effects of Provigil (in terms of energy)? Was it within a matter of days or a matter of weeks?

Laya

Reply # - July 29, 2012, 04:17 PM

cards7up
Posts: 635

Laya and Mom, so happy to hear of her great scans and here's to continued success and much less fatigue! Take care, Judy

Reply # - July 30, 2012, 01:18 PM

JimC
Posts: 2753

Hi Laya,

Sorry I can't help with your question on Provigil; Liz never took it. She had quite a bit of fatigue from her WBR, but there were so many other issues right after that (pericardial effusion/tamponade, plus bone mets with several courses of radiation to palliate them) we didn't address her fatigue with any medications.

I'm guessing you thought she took it because of this reply (http://cancergrace.org/forums/index.php?topic=7892.msg90647#msg90647 ) but if you read it again you can see it was Joe's wife Bobbye who used it.

Jim

Reply # - July 30, 2012, 01:24 PM

marisa93
Posts: 215

Laya and Mom,

CONGRATS!!!! That's really great news, woohoo! I hope the new med helps with her fatigue:) Much love and hugs to you both:)

Lisa

Reply # - July 31, 2012, 04:08 PM

laya d.
Posts: 714

Oh. . .OK. . .my bad! Thanks Jim. It's a moot point anyway because provigil was making my Mom feel antsy and super anxious, so she deceided to stop taking it today. We'll see what happens. . .

Laya

Reply # - September 24, 2012, 06:22 PM

laya d.
Posts: 714

Weeelllll. . .where shall I start.

I haven't been updating lately because things have been very day-to-day and I've been waiting for a lull in order to do my update. As most of you know, my Mom is a pneumonectomy patient who never really developed effusion in the right cavity after the lung was removed (it's normal for fluid to build up there). We later discovered that a brocheoplural fistula at the base of the right main brochial stump may be the reason, but chose to do nothing about it. In April 2012, we began noting a small amount of fluid in the space. By July, it had developed significantly and was beginning to leak out of the fistula and into my Mom's left lung while she slept- - causing her to aspirate and cough up serra-sangunous fluid. Cancer treatment (i.e., Alimta) was halted so that we could deal with this issue. My Mom first underwent a thorocentisis (draining of the fluid) so that she could lay down and sleep, etc. The doctor who drained the fluid (while my Mom was sitting upright) told me that the cavity was acting more like a "closed lung" (he had to suck the liquid out), rather than a cavity with a fistula (where he'd expect to see some air flow) - - so it was concluded that the fistula is positional - - meaning that it opens up while my mom is laying down. In any event, my mom underwent a broncoscopy via her original surgeon and he could not visually see the fistula. But he applied some fiberous glue to the stump hoping that it would help seal the fistula (going in he advised that the chances of this was less than 3%, but that it was worth a shot since he was going in anyway). Well, it didn't work. In fact, they ended up keeping my mom at the hospital overnight because she had a rough time after the procedure with coughing and breathing. . . .CONTINUED BELOW. . .

Reply # - September 24, 2012, 06:31 PM

laya d.
Posts: 714

After that, we all brainstormed together and decided that given that the text book answer is for my Mom to undergo a full thoracotomy - - and given the fact that she is no shape to undergo and thereafter recover from such a giant surgery - - we have to come up with out-of-the-box alternatives. The Surgeon's first thoughts were stenting - - but those tend to dislodge and have a host of other issues like granulation and discomfort. We suggested a PleurX Catheter - - which is not a fix, but alleviates her symptoms by having the fluid drained every few days. The catheter also comes with risks, including risk of infection of that cavity (called an empayema) which could be life-thretening and would require a full thoracotomy to clean up. So, we're stuck between a rock and a hard place - - and collectively have decided to go with the stent first (since it can easily be undone and is not invasive). If it works, we are good. If it doesn't work, we get rid of it and put in the catheter. The stent appointment is tomorrow. My Mom will be kept overnight at the hospital. My Mom also had a CT last week and we met with her Onc. today to go over the results. Given that she has been on no treatment at all since July, we expected to see a lot of growth. Well, there has been growth, but only a few mm here and there. Also, a few new sub-centimeter nodules have popped up in the left lung and medastinum lymph nodes. No other changes except for a "new minimal to mild anterior pericardial thickening/effusion" - - which worries me. Her Onc. now has decided to go back to Tarceva for two months, re-scan, and then potentially move on to Gemzar. She said that given the BP fistula problem and how totally crummy and fatigued my mom is feeling, this is not the right time to get into a trial. So, that is our big plan for now - - and, of course, things may change as we move forward (they always do). So, stenting tomorrow - - and if all goes well, starting Tarceva at the end of the week. CONTINUE

Reply # - September 24, 2012, 06:32 PM

laya d.
Posts: 714

So, for those of you who've had stents placed in your breathing tube(s). . .what has been your experinece with them? What side-effects? What problems? Etc. . . I'd love to hear from you (especially you, cs). . .

I'll keep you all posted. . .

Laya

Reply # - September 24, 2012, 07:38 PM

marisa93
Posts: 215

Laya,

Good luck tomorrow and I hope all goes well! (((HUGS))) to you and your mom and yes, please keep us posted!

Lisa

Reply # - September 25, 2012, 01:04 AM

certain spring
Posts: 762

I guess I have to put in the caveat that "Everyone's different", and that I can only offer my own experience. I have a plastic stent in my left bronchus, at a junction where there are various branch airways (hard to evoke without a drawing). So it was tricky to put in, and for the same reason there is a bias against taking it out if that can be avoided.
They put it in December 2010, and for the first nine months I had no problems at all. Really none. It didn't move out of place. In terms of maintenance, I was (am) on a nebuliser with saline, 3 times a day - the idea being that you have deprived the bronchus of some moisture/secretions, and need to resupply them. I am also on carbocisteine which, as I discovered from Dr Walko yesterday, is not available in the US, but which thins any mucus so it is easier to cough up.
After nine months, there was a progression panic which turned out to be a false alarm. It was not the cancer growing again but granulation tissue. Suddenly, the body had woken up to the fact that there was foreign body in its midst. Unfortunately for me (may not be the case for your mother, as I don't quite understand where her stent would be), the growth of this scar tissue has the same effect as the cancer, ie creates a blockage and makes me very breathless and tired. So my wonderful cardiothoracic team, to whom I am more grateful than I can say, clear it out every few months with a bronchoscopy.
The other thing about stents is that they can get colonised by bacteria quite easily. They (the bacteria) may just sit there quietly or they may turn into infection. There seems to be not much one can do except take antibiotics.
My very best to your mother, Laya. Let me know if there is anything else I can tell you - but please let her know it's been great for me, and that the problems I am describing only kicked in after nine months of peaceful co-existence.

Reply # - September 25, 2012, 03:31 AM

fortmyr
Posts: 128

Laya, I hope the stent provides quick relief to your mother and that she tolerates it as well as our dear CS.
Wishing her luck with the procedure and the outcome,

Myriam xxx

Reply # - September 25, 2012, 05:22 AM

Dr West
Posts: 4735

Laya,

I really just wanted to wish your mother luck with her procedure. I've seen such varied results with stents that I don't think I can draw any conclusion except that they sometimes work, and sometimes the procedure isn't successful.

With regard to the PleuRx catheter, one issue with longitudinal use is that losing lots of pleural fluid regularly also entails losing some important proteins in large volumes, which can lead to problems with immune function and malnutrition. That isn't an issue unless it's more of a chronic management issue, but given the slow pace of her disease (a very good thing) and her responsiveness to treatment (also very good), that's a potential issue with regard to placing a PleuRx catheter.

Thanks for your update, and we'll look forward to more. Thinking of you.

-Dr. West

Reply # - September 25, 2012, 05:39 AM

sleepless in jersey
Posts: 100

Hey Laya...I'm on the prayer/good luck wagon as well. Keep that positive energy that you have goin and Mom will do just fine.
Hugs your way...
Sleepless

Reply # - September 25, 2012, 05:56 AM

double trouble
Posts: 573

I'm so sorry Laya. If I'm understanding, the drain and the stent are to alleviate symptoms while they figure out how to repair the fistula?

I will be thinking about you both and I hope she gets some relief soon. This is so hard. I will be watching for updates.

Love Debra

Reply # - September 25, 2012, 06:10 AM

mikem
Posts: 69

Hi Laya, I have been wondering about you and your mom lately. I hope everything goes well with the procedure and that she gets some relief. Remember to take care of yourself too. --mikem

Reply # - September 25, 2012, 07:05 AM

catdander
Posts:

Laya,
Hoping your mom does really really well with the stent. I am sending healing thoughts to her and warm hugs to you.
xoxo,
Janine

Reply # - September 25, 2012, 09:48 AM

judys
Posts: 74

Hi Laya - Want to join with the others in sending you and your mom my best hopes for a successful treatment. Unfortunately this disease keeps throwing things at us----

Reply # - September 25, 2012, 02:11 PM

dragonfruit
Posts: 17

Dear Layla,

Wishing for perfect stent placement and relief for all of you. Will be thinking of you and your mom.

Anna

Reply # - September 25, 2012, 03:39 PM

cards7up
Posts: 635

Laya, I'm sorry to hear of this latest development. Praying the stent is the answer even if only temporarily while they come up with a long-term solution. Keeping you all in my thoughts and prayers.
Take care, Judy

Reply # - September 25, 2012, 04:50 PM

wadvocator
Posts: 79

Layla,

Even though I am a Christian, I will also be rubbing buddha's stomach for your mom's successful procedure and fast recovery!

Reply # - September 25, 2012, 05:37 PM

sherrys
Posts: 212

I just wanted to let you know that I am thinking of you and your family. It took me having the issues I did this summer to see how truly hard this is on a family. I always felt more like it was just me going thru it, but that is so wrong. So, I will keep you in my prayers and I hope that the stent works for her.

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