You and your Mum and family are in my thoughts.
Laya, my best to you both. You are in my thoughts.
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Hi Laya. Just wanted you to know I'm thinking of you and hoping your mom is doing better. Much love to you both.
I don't post very much these days, although I try to keep track of each of you, while I am dealing with my own situation.
Please know that your Mom (and you) are in my daily prayers and I am wishing good results for her and quality life going forward.
Hope mom is doing well on the stent with no complications and that it is working out. Keeping her in my prayers.
Sorry for my delayed update (and thank you Debra for your e-mail reminding me that I do need to keep my Grace Family in the loop on things). . .
Well. . .suffice it it to say, it's been an incredibly hard and trying 2 weeks. The stent was placed two Tuesdays ago, with a plan for my Mom to stay overnight at the hospital. Just hours after the stent placement, my Mom breathing had a very distinct gurgle and she had the sensation that she was choking on phlem/mucus, although her 02 saturation was always in the 98-99 range. She continued to feel worse and worse, wasn't able to really get out of the hospital bed...could barely talk, and only could lay on one side to get relief from the breathlessness she was feeling (no sitting, no standing, no walking, no eating, etc.). The hospital stay ended up being a 4 day stay, and they performed a repeat bronchoscopy last Thursday to see what was going on and to suction out this phlem/mucus that was causing her to gurgle loudly. After the procedure, they told us that the stent was placed "perfectly", they could not see any of the serro-sangunous liquid previously seeping from the fistula dripping down from the distal end of the stent (which was in her left main bronchus) - - but that they did see this stuff (which they said was white and as thick as wallpaper paste) attached in a 360 degree fashion to the end of the stent and around her main left bronchos (this is 2 days after the procedure). They didn't know what it was, had never seen anything like it before, but "peeled it off in two pieces and removed it). BTW: my Mom's actual surgeon did not do this part - - he was at a different hospital and therefore did not see with his own eyes what this stuff was. After the bronch, the gurgling went away and my Mom was able to sit, stand and ea t- - which made us happy, and she was discharged on Friday. Continued below. . .
(Continued from above) But, by Saturday afternoon, she was in the same shape she had been in the hospital. At discharge, they told us "her body was just reacting to the stent and that she just had to get used to it." So, we rode it out until Sunday night. My Mom absolutely could not handle it any more. She again couldn't sit, stand, eat, walk, and couldn't cough this gunk out. So, we called her surgeon's call center and were instructed to take her to the ER to have a pleurx cathetar placed. The surgeon's theory was that even though the docs couldn't see it when they bronch'd her, she actually was seeping the fluid through the fistula - - and that it was slowling working its way down to the end of the stump and coagulating into this jelly-type matter. So, removing the fluid out of the right cavity would help her. So, they put in the pleurx in the ER and then watched her all Monday. She did not get better and again demanded that they remove the stent. On Tuesday afternoon, they bronched her again and removed the stent. Her surgeon resisted a bit and wanted my MOm to ride it out some more, but my Mom said no. When thet bronched her, what they saw was exactly what they had seen the Friday before. . .that white gunky stuff at the end of the stent that she could not cough up. So, the stent is now gone, the pleurx catheter is in, and we will need to drain the fluid every couple of days probably for the remainder of my Mom's life unless the fistula somehow gets fixed. A nurse will be coming to the home to do this for the first few weeks, but after that, we will have to do it. The nurse at the hospital had me do it once before my Mom was discharged last night, and it wasn't hard to do. The hardest thing for me is to make sure we keep the dressing sterile, etc., to ensure that she doesn't get infected. She's home now and she is comfortable.
In terms of cancer, we are restarting Tarceva 100 mg today (probably until the next scan in 2 months).
Love you all,
Laya, I am so sorry to hear what your mom is going through, and I hope the symptoms will resolve quickly and that relief will come soon.
My thoughts are with you and your family.
Dear dear Laya, How awful this da.. cancer is. I absolutely hated to read your note but thank you very much for providing us with such a thorough update.
I wish I could do or say something to help.
I hope your mom gets comfortable with her new attachment and it works really well for her.
With Love and Hugs enough for the whole family,
Your poor mother, this must have been really scary for her...I hope that the pleurx and Tarceva will help her quickly.
Thank you for taking the time to update. Hugs to you and your family, I hope your mom can be comfortable with the pleurx. Just know we are all thinking of you and your mom.
I'm so sorry to hear of all these complications. You mother must have been miserable. I hope now that the stent is gone that she can get some comfort. Take Care - mikem
I'm sorry for all you/she are going through. It sounds like a hellish few weeks, but I'm hopeful that between the PleuRx catheter and restarting Tarceva (and not having the stent in), she'll feel better.
And the PleuRx and draining thing is absolutely manageable.
Please do keep us posted, hopefully with some better news soon!
Dr. Howard (Jack) West
Associate Clinical Professor
City of Hope Cancer Center
Founder & President
Global Resource for Advancing
Thanks everyone. She is doing quite well (comparatively) today. Here's to even better days ahead. . .
I am to so sorry your Mom and you had to go through all that, how awful!
When we hit things like that, I continue to tell Mom it's just another hiccup and we will get through this like we have. Continue to stay positive as you have...
Cheers to better days is right :)
Laya, I'm so sorry to have been the one responsible for you having to relive that awful experience just to update us. I had a feeling things weren't right with you. I'm wondering if they examined the wallpaper paste to determine exactly what it was? I'm sorry your mom had to insist they take the stent out. I hope this post finds you both adapting to the PleuRx, and that she isn't too bummed out by the whole thing. That must be hard to get accustomed to. Again, sorry to prod you into having to tell that awful tale. I was worried about you. Next time I'll try to just wait until you post on your own.
So much love,
Oh my gosh, Debra. . .NO APOLOGY NECESSARY! You were not proding! I'm so happy you e-mailed. . .absolutely made me feel very loved. . .and reminded me that I had to update everyone here. So, thank you!
Also, "thank you" to the rest of you for your care and concern. . .To further update, my Mom is miles better since being discharged from the hospital. She does have considerable pain and pressure when the fluid is drained from the Pluerx - - the vaccumming function/sensation apparently irritates the pleura - - especially as they get close to emptying the whole cavity. She takes Tylenol for it, but nothing stronger (although her docs have said that she can have stronger meds if she wishes). The acute pain goes away after about an hour - - but the lingering dull pain remains for a few days. The doc (surgeon) originally had ordered that the space be emptied every other day. . .but since we are going through this exercise for the pure purpose of not allowing the fluid to build-up high enough to go through the fistula, the doc advised today via e-mail that we can drain "as needed" - - even if it's just once a week. It all will depend on my Mom and how she is feeling. So, this is good. . .
Other than that. . .we continue with Tarceva. . .
Much love to you all (especially you, Miss Debra). . .
P.S. I hope they sent the gunky stuff off to pathology. I know that they sent the fluid off again this time around. We'll find out in about 10 days when we go in for a visit with the surgeon.
Dear Dear Laya, I hope your mom feels even better once she is able to control the plurex cath. Thanks so much for updating us. I know you have created a beautibul stability for your family. I hope everyone can enjoy it...I mean you of course...
I hope the kids and the rest are doing alright. Hugs and strength to you and your mom. My thoughts are with you all,
Sorry to hear all that has been going on with your mom! I hope she continues to feel better! I am thinking of your mom, you, and the family always. Sending love, hugs and best wishes:)
Laya, I am so sorry to hear about this latest challenge. It is so important to be a strong advocate...and so hard to know where the line is between whether to "ride it out" (easy for them to say!) or take action to correct something that is clearly "not working."
I have been thinking of your mom's and others' experiences lately as I deal with my own challenges and side effects. Will update soon when I figure out what's going on.
The biggest complication in the last week was Genentech's decision to exclude me from a MK-inhibitor trial because of "too many previous lines of therapy." I would have met the inclusion threshold except that they wanted to count my initial and then later resumption of Tarceva as three separate individual lines of therapy.
Oh no, blue skies. . .I'm sorry about that. Just as an FYI, when my Mom was switched to carbo-alimta after first-line Tarceva treatment, her insurance company would not approve the carbo because they said she'd already had max platinum before and that it would not approve it for "4th line treatment." My Mom's doc had to write them and explain that the intitial Tarceva (back before surgery) was neoadjuvent treatment, the follow-up cisplatin-alimta post-surgery was adjuvent treatment (again, going to cure). . .and that her first line treatment with Tarceva once her cancer came back was Tarceva (because she has an activating mutation) followed by the proposed SECOND LINE carbo-alimta. It took some doing, but they finally understood their error and approved it. So, hang in there and keep talking to them. . .
Looking forward to your update.
Laya, I'm so happy to hear that your mom is doing better, but hate, hate, hate that she is having to live with that drain. I hope that the pain will diminish as time passes. Giant hugs to you both.
Well. . .we just can't seem to catch a break these days.
2 sub-centimeter brain mets were discovered by way of an MRI yesterday (3mm and 6 mm). The 6 mm round nodule is of particular concern because it is in an area which makes it "highly suspicious" for leptomeningeal carcinomatosis (it is in "the right aspect of the the interpreduncular cistern"). My Mom will be undergoing a spine MRI this morning to see if they see anything else that would lead them to a lepto diagnosis (like the traditional caking or frosting pattern more common with lepto). If the spine MRI is negative, they plan on doing a spinal tap to see if they can find any cancer in the fluid. If that also is negative, the plan is to gamma knife the mets. The neurosurgeon did not advise of what treatments would be offered if lepto is diagnosed. I think he's leaving that discussion up to my Mom's Med. Onc. He did, however, say that she should continue taking her tarceva (which she restarted on Oct. 4th). By way of e-mail, my Mom's Med. Onc. concurred with this game-plan. As a reminder, my Mom's last brain MRI was 7/26/12 and she had gone untreated for cancer from about mid-July until Oct. 4th due to the BP fistula issue we were dealing with.
More importantly, my Mom feels pretty much done at this point. She basically has told me as much. She is extremely exhausted and fatigued. She does not know anything about the poor prognosis of patients with lepto. She hasn't asked and I have not volunteered. The neurosurgeon did say in her presence that lepto tends to be "very aggressive" - - which I believe clued her in to the fact that this is pretty darn serious. For the lack of a better euphemism, it's my impression that "she's lost her will to fight."
So, we're just trying to get through the day here. . .
Laya, hugs. To you both. So sorry this is so hard.
Hugs from here too with love and sympathy,
Im so sad to read this. Thinking of you,
I am so very sorry that your Mom's cancer has progressed to the point that she is too tired to continue the fight. My thoughts and prayers are with you while you walk beside her. May God bless you with strength in mind body and spirit for this part of the journey with your beloved Mom.
With great sadness,
Your poor mother. What a rough time she has had recently. I'm glad she's able to tell you how she feels, and you're able to hear it. This is very hard stuff.
re cs, from what I read daily, the combination of Laya's understanding and the telling and hearing between Laya and her mom is unique, and it is good, and oh so very hard stuff. They are lucky in an unlucky place.
I am really sad to hear this latest news. you know we are with you. --mikem
Very well put... Lucky in an unlucky place. Very true, I can only hope that I have as wonderful a relationship with my daughter in the future as Laya and her mom do.
Oh Laya I don't know what to say, but try to continue to stay positive and continue to hold your Mom's hand. Lot's of prayers are with you and Mom!!!
If there is anything I could help you with please ask away...you know my Mom's story.
Much hugs to you
Dearest Laya, I am so sorry to hear about your mom's latest MRI results. I am praying and hoping for the best for you and your mom. Hang in there and let's hope for the best.
I'm just so sorry for her, you, and your whole family. I know you're working with great people and that you've got a strong network of support there, but you've also got legions of people here thinking about you who want to help, or at least just provide the support of being here for you.
Dear Laya, I really hope that your mother will test negative for leptomeningeal carcinomatosis and that radiosurgery will be possible. Times are tough for many in the GRACE family.
Oh Laya. I don't even know what to say. I too, hope the CSF is negative and I hope she gets through that procedure without too much difficulty. She has had so much invasive stuff going on lately. No wonder she feels "done." I'm hoping this is just a temporary mood for her. So much to hope for and so much to fear, all at once. I am with you every step in spirit sweet girl, with so many others here at Grace. Thank you for letting us know.
So much love to you both,
Laya I am so sorry that you may be facing Lepto. That word alone is so scary. I am praying for you and your family and I so hope that they are wrong. I also pray that your mom gets thru this and gets her will to live back.You will be on all of our minds and please know that we are all here for you, as you have been for us. ((((Laya))))
Love you Laya and praying for you all.
Laya - As you can tell from all the comments, your GRACE friends are here for you. The path this disease too often takes is a cruel one. I'm holding onto positive thoughts for now---- Take care of yourself.
Dear Laya----what a trying time this is for both of you. You are such a strong person who takes time to support us even when your Mom isn't doing well. Remember we care.
Laya and Mom, I am so sorry to hear this latest news. I pray that's not what it is. You'll both know when enough is enough. Keeping you all in my thoughts and prayers. Take care, Judy
I am so sorry for you all! I hate this disease and the havoc it wreaks! Sending your mom and you lots of (((hugs))) and best wishes :) Please know that you are always in my thoughts!
I'm so sorry to hear of this latest concern, and with everyone else in the GRACE family I am sending my best wishes that the spinal tap is negative. My thoughts are always with you, your mom and your family for strength, understanding and peace.
<p>I began visiting GRACE in July, 2008 when my wife Liz was diagnosed with lung cancer, and became a forum moderator in January, 2010. My beloved wife of 30 years passed away Nov. 4, 2011 after battling stage IV lung cancer for 3 years and 4 months</p>
We were told yesterday that the spinal MRI was negative and the tumor board at her neurosurgeon's hospital (our local hospital) met to discuss my mom's case. They decided not to tap her cerebral fluid (I assume because lepto is no longer suspected) and just to move forward with gamma knifing the 2 spots. So, we are scheduled to go forward with that. . .
I will keep you all posted.
Laya, this is wonderful news! Wishing your mother the best with the Gamma knife,
Very good to hear. Because gamma knife shouldn't be associated with any significant side effects, I sincerely hope and expect that this will go very smoothly for her.
Please keep us posted. Thinking of you.
How relieved I know you all are, I am. I'll keep you in my good hopes for smooth sailing.
Oh Laya! Even a Happy Dance doesn't say it... I couldn't be happier today! I hope this is the boost your mom needs to get her into a better frame of mind. She's been through so much. This is just wonderful news. Thank you for keeping us up to date.
Much love to you both,
How fantastic! It is the bits of good news amongst all the crap that keeps us going! What a lovely silver lining to the many dark clouds you have had lately.