Debra knows what a big fan of the happy dance I am. Bur I REALLY want to "second" Gail's post about the "bits of good news amongst all the crap."
There's been entirely too much crap going around lately as far as I'm concerned. I am glad to see some silver linings coming out amongst the black clouds that have been looming for so many of us these past few months!
Happy weekend to all!
Funny thing this lung cancer business. . .it certainly puts us all through the ringer while also putting a whole other perspective on things in life. Here we ALL are relieved and "hurrah"-ing the fact that we're dealing with 2 pesky little brain tumors and nothing more. Sheeeshhhh ;O) Crazy. . . Just crazy!
.I'm so happy for you all...that's awsome! She knows what to expect with the G.Knife so no surprises there. I do believe we had a chit chat when your Mom had hers you all had a chuckle or 2 ,Mom trying to drink/eat at the down time part. So that will give you all a little ha ha again...
Although I rarely post anymore, I think about you and your mom every day, and I wish you both peace.
My mom, like yours, eschewed pain medications even under the most dire circumstances. She didn't want to be mentally cloudy, didn't want to become dependent on medications, didn't want to be weak, and on and on with counter-arguments when we encouraged her to try something more potent than Tylenol. When she finally did, however, her quality of life improved considerably.
This seems like a stupid and obvious thing to post. I'm sure you have all tried to offer your mom stronger pain medications, and maybe pain from the drain is no longer a big issue. But as the fellow daughter of an amazing mom who began to feel "done" at one point, I wanted to offer something that made a difference for us.
wishing you peace and strength,
I just wanted to counter that "stupid thing to post" idea. Many of the same barriers come up again and again, in many people. It is never a mistake to highlight points that may seem self-obvious but are still a sticking point all the time.
Thanks for continuing to participate. It's truly helpful.
Dr. Howard (Jack) West
Associate Clinical Professor
City of Hope Cancer Center
Founder & President
Global Resource for Advancing
Anna, I wanted to say that your account of how your mother died is one of the most beautiful and reassuring things I have read since I found out that I was terminally ill. Thank you for writing it.
Anna: Thank you so much for your post and your continued support and well wishes. I really really appreciate it.
The topic of pain management is a daily conversation between my Mom and I. Her pain seems pretty well-managed right now with Tylenol 3 (which was prescribed for her last Wed.), as her headaches are not constant (they come and go). Her biggest problem right now is fatigue. It's a debilitating fatigue that you literally can see on her face. She looks worn down, pasty, and droopy. My mom is one of those women who always has her hair done, has her make-up on, and is "dressed." All of that has flown out the window recently. She just does not have the energy. It's interesting though that there are days that she seems to bounce back a bit - - she has color, she eats normally, she moves around, she visits with people, etc. And then there are days when you literally can tell that she is just dragging herself to do just about anything. . .even going from the couch to the restroom, etc. We saw her Onc. on Wed. and she believes that a lot of what is going on here has to do with the trauma and suffering she underwent with the whole stent issue and the recent hospitalizations, etc. She thinks that my Mom is having a much harder time bouncing back from things now that we are deeper into treatment, and that she needs time. So, that is what we will give her. She will undergo gamma knife next week and then we will give her some time to recover (of course, while on Tarceva 100 mg). A lumbar puncture also may still be in the cards sooner as opposed to later. We'll see.
I'd like to second the oncologist's use of the word "trauma". The hustle and bustle of a hospitalization can be bewildering for the patient. I'm the same as your mother in the sense that I'm taking longer to "bounce back" than I used to. It's harder to get up, get dressed, do normal things, respond to people. I also tend to get depressed afterwards - maybe because there's so much adrenaline flowing during the hospital stay.
Laya, I wanted to ask whether you were given any explanation as to why they might have incorrectly suspected leptomeningeal disease? or they implying that it is it still a possibility? It seems particularly traumatic for your mother and your family to have had the possibility raised when it turned out not to be the case. Of course, please don't answer if this is something you don't want to think about.
I just wanted to say that I'm sorry to hear that things are so difficult for your mother. I agree that, after having met your mother, it's hard to imagine her as anything other than completely put together. But I also know what cancer does to a person. I hope she turns around soon.
Laya - I read GRACE daily (well maybe not on days like Sunday and yesterday when I had the taxotere yuks) but rarely actually sign in. Just wanted you to know I've been following the hard path your family has been following. Thinking of you all. Hope things are getting better.
Just to update. . .My Mom had gamma knife to the brain tumor in her right cistern this morning. It had been 19 days since her last MRI and according to her doctor, the tumor had almost doubled since the last MRI (it's original measurement 19 days ago was 6.5 mm). But the high resolution MRI they did today in conjunction with the gamma knife didn't show anything else - - and the doc said that her daily headaches, the on-and-off double vision she's been having the past few days and her nausea should get better in about 2 weeks time now that this spot has been zapped (it takes a while for gamma knife to work).
In terms of the lumbar puncture (and despite the clean scans/MRIs), my Mom's Onc. has decided that she wants it done just to be doubley sure that we are not dealing with cancer cells in the fluid surrounding the brain (I guess my Mom's symptomology is a bit worrisome for her). She said that finding cancer cells in the fluid will affect her treatment plan for my Mom. . .so hopefully we will get that done next week sometime.
Other than that, nothing more to report. . .Just fingers crossed that better days lie ahead. . .
Good luck to your mom Laya. I hope her headaches resolve and she gets bettter soon,
Oh my. I had really hoped the possibility of cancer in the CSF had been ruled out and that she would not have to have the test. She has been through so much. Is she feeling better emotionally? And how about you? I hope you have someone to talk to who is supportive. I hate cancer.
Just wanted to wish her and you luck. We're thinking of you. And I definitely understand her oncologist's desire to be cautious and learn more from a lumbar puncture.
Glad one procedure is over and it seems no complications, lets hope smooth sailing with the next one!
Jersey will be hear for you...lots of luck your way!
Hang in there Laya, and all the best
Thanks everyone. . .
We were able to get my Mom squeezed in for her lumbar puncture this past Wed. at a local hospital near our home. She got through the procedure OK, but ended up with a knarly spinal headache - - most likely due to the fact that they took 40 ml of spinal fluid (which, from what I understand, is a significant amount). They had her lie flat on a gurney for about 1.5 hours, and then I took her home (the headache went away almost instantly once she was flat on her back). Tylanol and caffinated drinks followed which, again, helped.
Anyway, we just got a call from her Onc.'s office and the spinal fluid was clear of cancer cells (YAY!). Still waiting to hear back on some of the other things like infection, etc., which may take a few more days. I know that the standard is to do 3 taps if the first 2 are negative, but my Mom's Onc.'s office did not mention that we need to go through any additional procedures. I personally am grateul for that right now, and am elated that at least they found nothing in this go-around. My Mom's Onc. is out of the office until mid-next week. . .so, I don't think we'll be hearing anything more about this until she gets back (if at all).
In terms of her symptomology, she still has headaches and nausea - - both of which are controlled with medication. She is a bit short of breath, but her O2 levels were good when they were measured at the hospital on Wed. Again, her brain surgeon is of the belief that her symptomalogy will resolve in a few weeks - - once the gamma knife has been able to do what it needs to do. . .
So, that's it for now. . .
I'm glad she's through the spinal tap and that it was negative. And oh so hope that she doesn't have to have another. I like what her brain surgeon said about her symptoms going away. The sooner the better.
I am so happy you managed to catch a break, and I am hoping this is the turning point and good things will come after this.
I'm glad to hear she got through the lumbar puncture OK, and even happier to hear that they didn't find any evidence of cancer there.
Please give my best to your mother and your family.
I am really glad to hear that you got good news from this. Hopefully her problems will clear up as a bit more time goes by. --mikem
Dear Laya, so happy to hear the spinal fluid has no cancer. I too read the GRACE forum though do not sign in regularly and have been following the updates on your mom. I so admire her tenacity and yours and hope to hear more good news concerning her brain tumors as well. Big hugs!
Delighted that your mum has kicked a goal. Great to get a win for a change.
Thats great Laya! I am so happy for once you are able to give us some good News! Hope your able to give her some relief from the Fatigue! My thoughts and prayers are with You and Yor lovely Mom!
Well. . .we continue to roll with the punches here. . .
I ended up having to take my Mom to the ER on Sunday because she had extreme shortness of breath when she did ANYTHING other than sit or lay down. We were worried about pulmonary embolisms. At the ER, they did a full work-up - - including a chest CT - - and found that my Mom's left main bronchus and the breathing tubes in her upper left lobe are becoming encapsulated by tumor (and, therefore, the air tubes are narrowing). Thankfully, no portion of her left lung has yet collapsed, but - - from what I understand - - it is just a matter of time if we do nothing. Our local hospital does not treat my Mom for systemic cancer, so there was no point in admitting her (although the ER doctor said that if we wanted to he would admit her). We brought her home and contacted her Med. Onc.'s office for guidance. So, the plan right is now is to switch gears - - i.e., to get off Tarceva and start chemo (Gemzar). There was mention of Taxotere originally, but her Onc. decided today that the side effects may be too difficult for my Mom to handle right now. Also, at this point I don't know if stenting and/or radiation to these tumors is possible in my Mom's case, but plan to discuss it with her Med. Onc. when we see her. . .
This dreaded disease is relentless. . .
So sorry Sweetie! Prayers are with Your Mom and You! Your Such a good Daughter! I will keep you in my thoughts.
hugs and whispers
Really sorry to hear about the breathlessness - it is a real curse when it happens as it creates anxiety, which in turn makes the breathing worse. Lots of reassurance helps (or it helped me). And, if possible, don't let your mother carry anything - I found that trying to carry my overnight bag for example was a trigger for respiratory distress.
I know your mother didn't get on with the stent when they tried putting one in. Did they ever get to the bottom of why that was? I wonder if she had an allergic reaction to the stent material - you get different types, made of wire mesh or, in my case, plastic.
But if that's not an option, radiation can be fantastic in keeping the cancer at bay while the chemotherapy gets to work.
Dear, dear Laya--
It just seems like you clear one hurdle and another pops out of the ground. I'm so sorry your Mom is going through the mill like this. I know she has a great team and the best director ever (you) - I hope she gets some relief soon and can get on with recovery from Gamma knife. So glad the lumbar puncture was clear at least.
You amaze, as always, with your composure and far-reaching thoughtfulness. Sending you strength, hope, light.
I'm so sorry. I am only comforted knowing that you are so knowledgeable about all of the options. I don't know if that helps you, but I feel it would help me maintain a small sense of some control in such an otherwise uncontrollable situation. You and her doctors are doing everything possible, as I'm pretty sure you know.
How much more can you, your mum, and your family go though. This is so damn unfair. I wish there was something to say that would make a real difference.
Thank you everyone. . .I appreciate all of your kind words. . .
Laya, please hang in there! You are strong and I am sure that things will turn round for a person like you.
I'm so sorry she can't seem to catch a break. The one positive thing is that you are there for her. I hope she gets some relief soon. Take Care --mikem
Laya---so sorry about this latest info. Remember we all care.
Thanks everyone. . .I will keep you posted.
I'm thinking of you and your mom and praying for the best,
All the best Layla!
First round of Gemzar down. . .Fingers crossed that she benefits from it and the side-effects remain minimal.
Thanks everyone (especially you, Myriam) for all of your continued well wishes. I will keep you all posted.
Will keep the two of you in my prayers! Stay positive! God Bless you!
I'm very hopeful gemar will control your mom's cancer and without too much toxicity. I know you know but I'll say it anyway, stay on top of the nausea meds.
I'm sorry to hear about your mom's recent troubles and ER visit. Thinking of her and you always and hoping she does well with the Gemzar. ((((hugs)))) to you both!
Thought of you and your mom this morning when I woke up today. I haven't been on here in months (but the dreaded 6 month check up PET/CT for my mom in is Jan....guess I live in denial/hope/dreamland until then).
Glad to see your mom is still fighting like a champ! Hope and pray for you guys to have success with Gemzar. With Thanksgiving approaching, I know how thankful we both to have our moms with us. I'd give anything to find a cure for this awful disease.
Until then, sending hugs, prayers, and positive thoughts!
Have a great Thanksgiving!
Thank you friends. . .
My thoughts and well wishes remain with all of you as we continue to move forward. . .
As ours do with You & Your Mum I think many of us check daily to see how other GRACE's are doing
Hi Laya. I'm hoping you had a wonderful holiday, and am wondering how your mom is doing on Gemzar?
With loads of love,
Hi Debra (and Everyone):
My Mom had her second infusion of Gemzar last Friday (the day after Thanksgiving) - - and she really is not feeling any additional side-effects from it. She still is fatigued, but says that its no where near the fatigue she was feeling with Alimta or Tarceva. She still is short of breath (and gets winded easily), but the Aleve and steroids she is on are helping with that. She also still feels pressure in the back of her head (in the area she had surgery last year) - - but, again, Aleve really helps with that. Her on-and-off double vision is still there, as is her on-and-off dizziness (which every now and then results in spontaneous vomitting). But thankfully, not much more to report at the moment.
So, how are you doing Debra? I hope you had a nice Thanksgiving with your loved ones. Ours was pretty quiet and laid-back (which was a nice change of pace).
Much love to you all xoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxox,
Great to hear she's feeling so well on the gemcitabine. I look forward to the update of her next scan...I hope you have good news to share.
Hi Laya, Good to hear your mom isn't experiencing anything new. I hope for good results in her next scan report. Glad you and your family had a quiet Thanksgiving.