No worries Jim. Hijack all you like.
Just to update my experience with Alimta. So far so good. Pain is much better but I'm still exceeding the PRN morphine limit a little. But it's improving so no worries.
No nausea and appetite is good. Another plus is that things still taste like they're supposed to, which is great. Both Cisplatin and Xalkori did a number on my taste buds.
I have a little bit of a flush across my upper torso and face but it looks more like a mild sunburn than a rash. And it doesn't itch.
Still fighting constipation.
Overall I would say that this is the least eventful start to any of the treatments I've done. I know I'm only a few days in so not making any judgments, but I would tell anyone about to begin Alimta that it's been pretty much uneventful, so if you're on the fence about starting, dive in!
I won't bore you guys with constant updates but will report on blood counts and adverse events, also will share scan results as they come available.
Love you all!
Your updates are never boring. If you want to post every day that you are feeling good, we'd be happy to hear it!
<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>
So good to hear from you but so sorry you are going through so much pain. I am so very happy that the Alimta seems to be working and, hopefully, you will be able to dial back on the amount of pain meds you need to be comfortable.
I just love to hear about your wonderful grandaughter and that she spends time with you.....priceless.
Please know I think of you daily and have you in my prayers.
Good to hear the Alimta is not knocking your socks off, D!!! Muwah!!!
Hi guys. I guess I'm past due for an update. I didn't do so well with my first infusion as I had hoped. By the 7th day I was very dehydrated and experienced grade 3 liver toxicity, with bilirubin through the roof. I was given fluids twice before time for the next infusion.
Since I did rather poorly my dosage was cut by half. Best to avoid liver failure if we can. I also had lost 11 pounds in the 3 weeks. I seem to have a real tough time eating, and even drinking, once the steroid wears off. The steroids are making my tremor go crazy. Having a tough time with shortness of breath too, so I'm riding in a wheelchair when I go to clinic and supplementing O2 at home as needed, which is pretty much any time I get up and try to do anything.
Aside from all of that my spirits are up as usual. Gotta keep a sense of humor about life. If not it becomes a cruel joke.
Much love and respect to all,
Hi Debra, Was just thinking about you today so thanks for the update. I'm so sorry you're not doing as well as we all had hoped however I think half a dose will be enough to scare away you're evil cancer for now.
Thanks for keeping a sense of humor because I'm all out of room for cruel jokes.
Much love and many hugs,
Yes, thanks for the update and not feeling like they all need to be reporting a great triumph. We hope you'll have great things to report, but we're interested and want to be there for you no matter how things are going. I hope it's possible to thread a needle and treat you effectively but safely.
Dr. Howard (Jack) West
Associate Clinical Professor
City of Hope Cancer Center
Founder & President
Global Resource for Advancing
As Dr. West said, regardless of what's going on we always like to hear from you, though of course we'd prefer good news. I'm sorry to hear that your first infusion caused so many problems, and I hope that the reduced dose does the trick more tolerably.
Though many others might not be able to manage it, in your case the one thing that's not a surprise is your continued good humor. One of the reasons we love you so!
Keep on truckin',
It feels as if I have refound an old friend, even though you don't know me. I've finally caught up with you, after I stopped reading for a while because I needed the break from what seemed like a long run of sadness (both on this site and off). But I'm back, and catching up slowly, and very happy to learn you were kicked out of hospice. I got along pretty well on Alimta in 2011, and have been off it since, but new tumors just appeared so I am back on Tarceva to see if that has any effect. But it was a good long run for me and I wish you the same. And I wish us both a repeat long run now. I find your sense of humor endearing. Good luck, and let us keep hearing from you, you are so real you make the others of us feel better.
Hi Debra -
Just thinking about you, so I'm saying hi. Hoping things have calmed down some since you last posted.
PS - Hi Jim :)
Hi SoCal. Thanks for saying such nice things. I haven't been participating much on GRACE for some time so it's nice to connect with someone I hadn't known before.
Louise, as always love and peace to you dear sister. Yes, I do owe you guys an update.
Round 2 of Alimta did not go well at all. By the seventh day I was sweating profusely I tried to drink but began gagging and having dry heaves. Could not keep any food down, and barely any fluids. When the kidneys did work the urine had a ghastly odor to it. We finally called the Hem Onc on call (as it was the weekend-of course) and were told to call 911 and come to the ER, which we did.
In the ER we learned I had a UTI (Urinary Tract Infection), Sepsis, and dehydration. Total Bilirubin 6.0 and direct Bilirubin 4.5. Curiously, I was afebrile throughout the 3 days in Hospital. So fluids and antibiotics until things settled down.
I also have a small pericardial effusion and a small right pulmonary effusion.
Monday I go for CT and labs and a consult with a different Onc. My doctor was called away suddenly so I'm seeing a different one, but that's fine because I like to hear different perspectives.
I will be asking if it's possible that my dose, which was supposed to be 1/2 the original, might possibly have mistakenly been given at the full dose. I also plan to ask how much of this the liver can take before it results in permanent scarring or other damage. I'm willing to continue if they feel it really is safe to do so, but I can't spend 3 days in the hospital every cycle.
I haven't been using oxygen at all. I get breathless, but I find I recover just as quickly with or without the oxygen. I just have to stop what I'm doing and rest until it passes. I think maybe it was a bit of a crutch for me.
So that's my report. Wish me well going forward. Hopefully I'll get more used to the drug and tolerate it better and it will shrivel up that tumor and make it suffer and die!!! Hahahaha!
With much love and respect,
Thanks for the update, Debra. I don't think there's any reason to suspect that your UTI should happen over and over. I do think it's worth double checking on your dose.
Your attitude about new docs providing an opportunity for another perspective is wonderful.
Good luck, and we hope you'll have a more positive update next -- but please let us know either way...
Thank you Dr. West for weighing in. It was not the UTI that I am concerned about, it's the spike in bilirubin and the dehydration. I'm repeatedly amazed by how sick I can get so fast. I live alone so I've asked my family to pay more visits just to be sure I'm really okay when I say I am, because every time I've ended up in the hospital I really didn't think I was that bad. I guess cognitive skills aren't 100% when you're really sick.
Anyway, I'm hoping there has not been any irreversible damage to my liver and that we can find a dosage that brings about some response, but that I can tolerate a bit better. If not, we'll move on to other options if there are any.
I feel the same way I did before. If the treatment is going to make me that sick, that to me isn't living. I would rather decline treatment and work on staying as healthy as I can and enjoying what life I have left. I know some people just push on through treatment after treatment, braving the side effects like warriors brave injury. I'm not made that way. I don't see it as a war, or a battle, or a fight. I know I won't win. And I'm glad my family feels the same way I do. I would be heartbroken if they were telling me I have to fight harder or that I'm giving up. Fortunately they understand and would rather have me around happier, feeling better and functioning better for possibly less time than having a little more time but being sick and distant and miserable the whole time.
So, if Alimta proves to be more toxic than my body can tolerate so be it. I'm okay with that. At least I know I gave it a shot .
Good to hear from you Debra - and you continue to demonstrate what a fabulous person you are! Yes, please keep us updated as you can.
Be good to yourself!
All of my love,
with as much respect,
So good to hear from you in spite of the fact that things have not been going your way lately. You have an amazing attitude and if anyone deserves to beat this nasty beast it is you. However, I must say that your realistic attitude is refreshing to hear and I want to thank you for helping to clear up the misconception that beating a cancer is a function of attitude and determination. I am not saying that attitude and determination is not a factor in staying alive longer, I do not have that answer but suspect it does in some cases, but in numerous cases numerous cases no matter how hard you fight and now matter how determined you are you are not going to win. I guess I just sometimes get sick and tired of hearing people say so and so beat it because of their determination and grit, implying others who did not make it may have had less in the character department. Cancer is a very individualistic disease and it is quite unpredictable how any given patient will respond to drugs and treatment. Some do better than others no matter how hard either fights or prays. Sorry for the rant but it has been on my mind for some time and I needed to let it out. I also realize that it is only my opinion, I have no facts to support what I say, but that is what I believe.
You are a lovely lady. I wish you well and thank you for your strength, humility, realistic attitude, and sense of humor.
Just one of your admirers,
Love you, Debra!
I agree that it is your own personal battle to fight the way you want to fight it, and I'm glad that your family respects your choices. Knowing you as I do through GRACE, I wouldn't want to be the one to try to tell you you're wrong! Liz' oncologist told her from the beginning that there were two goals of treatment - lengthen life and improve its quality, and at some point it becomes necessary to shift emphasis from the first to the second, but only you can decide when that is appropriate.
I also agree with Bob that the kind of great attitude that you possess is a definite asset, but doesn't determine the direction of your cancer. During Liz' illness, someone referred me to a book written by a survivor of a much less aggressive form of cancer, in which he claims that if you set your mind to beating cancer you hold the key within yourself. Every oncologist with whom I've discussed this issue says the same thing - over the years they've seen plenty of patients with good attitudes fare worse than the medians, and just as many people with defeatist attitudes beat those medians. I think a good attitude helps most in making the best of a terrible situation, so that you can find joy in the midst of your difficulties. A negative point of view (as tough as it is to avoid) simply ensures that the time remaining, whether it is years, months or weeks, is as miserable as you can make it.
And since I agree wholeheartedly with his statement, I think it bears repeating: You are a lovely lady. I wish you well and thank you for your strength, humility, realistic attitude, and sense of humor.
Love and respect,
It's always good to hear something from you, Debra! I'm sorry you are having difficulties but happy to hear your always, wonderful attitude shining through! I agree with Bob and Jim, you are a very lovely lady indeed! I'm so glad your family is very supportive of you and your wishes. Mark felt the same way as you, if treatment would just make him sick he wanted no part. He preferred quality over quantity. He was lucky in that treatment did not make him sick. I do hope you and your dr can find a balance for quality. If not, just work on staying as healthy as you can, like you said. You are amazing, Debra!!!!!! :)
I feel I know you through your posts over the years. I want to say I admire you greatly. Your attitude is an insparation to all. Good luck in your battle.
I have not posted on this thread despite having been lurking.
You cannot know how much of a calming effect you personally have had on me this past year since my wife's diagnosis. I was in a panic, not knowing anything.
I found this site and although I still have much to learn, I feel better at least knowing what I know.
But another thing is seeing how other folks have handled being dealt the same hand. It's trite, perhaps, but you are indeed inspiring.
Thank you from the bottom of my heart,
Debra - I lurk also, and though I don't post much (busy on the back end), Tom's post specifically (of course as well as the others) hit home with me. I agree with Tom's words - that you have had a calming effect, and seeing how you (and others) have handled being dealt the same hand, is inspiring, and is important. It is such a big part of what GRACE means to be.
I truly hope you know that by sharing your thoughts and the ups and downs of this journey you help others tremendously. You help others feel not so alone, you connect, you are caring and giving of yourself and your story. It is a very special thing, and speaking from experience from the caregiver side, knowing there are others out there that you can learn from and connect with is extremely extremely important, and as Tom said - calming.
So - l also thank you.
Visit my bio here.
With as much respect as I have for anyone, I have for you Debra. Thanks for keeping us posted on Grace and I hope things get better. I agree with Tom and Denise and Andy, you're the force that I feel physically.
Much hope and big hugs,
Well, scan is done and it appears that my disease has progressed through the two cycles of Alimta. And it seems that Alimta was too toxic for my liver, so no more. I have to admit I was relieved. being alone, getting sick enough to have to call a family member and then having to be transported by EMT's to the ER, and being admitted once again with yet another infection was not a scenario I wanted to revisit. And my liver disease has been stable for 6 years. I'd like to keep it that way.
So, this was a different oncologist I saw, sitting in for my regular oncologist who is out of town. I liked her. She was very frank and to the point. She said there were 2 agents that she thought might be worth trying, but she wasn't speaking with much enthusiasm. They are either single agent gemcitabine or single agent vinorelbine. She writes " Both have shown evidence of general increase in
survival time compared to no treatment in randomized trials (although the average increase was minor – 1-3 months – but some limited patients have longer sustained benefit – hard to predict). Typical benefit is stable disease rather than regression of the tumor.
Of the two, during the discussion, I favored gemcitabine based on number of responses I have seen in the past, but when reviewing her chart more thoroughly, the prior elevation in liver tests might suggest vinorelbine as a safer selection. If she elects treatment, she would receive ~ 2 months of treatment and have repeat CT scan to assess appearance of the disease. If treatment was tolerated and tumor was at least stable, she could continue. If at any point, treatments seemed too burdensome, or if the CT showed worsening disease, she would discontinue.
continued on next post...
"If she decides to proceed with treatment, we can arrange that. If she wants to start sometime > 3-4 weeks from now, we should get another CT to use as baseline prior to starting.
If I do not hear from her, I will routinely schedule a CT scan for ~ 2 months from now for interval surveillance. She will wait until further clinical deterioration before electing to re-enroll in hospice"
So after looking up both drugs, thinking about how this was feeling a bit like "Whack a Mole", I decided to wait the 2 month interval and rescan, with the understanding that I may deteriorate, in which case I would call Hospice.
Physically I'm feeling better. Emotionally I'm doing a lot of second guessing. Have I made the right decisions? But I realize this thinking is nonproductive and what is done is done, right or wrong. Prognosis wise I'm right in line with what I was told two years ago, so I'm beginning to go back over GRACE posts reading what Stephanie, Certain Spring, Gail and Jazz wrote. I see their uncertainty in trying to figure out if this was the beginning of the end, and their ultimate surrender to the truth that if it is, there's nothing to do but "hold your nerve" and go as gracefully as possible, which they all did.
I feel like I've still got some gas in the tank yet, so I'm not ready to say I'm about to join them. I'll just say I'm not on a sure footing as I was before.
With so much love and respect, and I don't feel worthy of the wonderful things you are all saying. If I've given anybody comfort or strength or encouragement that is so rewarding for me, making this disease even more of a blessing.
Love you guys, Debra
Debra... I don't have words tonight, but I wanted you to know that I'm sending as many tight hugs as you'll accept. I'll write again. Louise
Hi Debra! Sorry to hear of you troubles! You are such a fighter! Hang in there and I hope you can enjoy your Christmas and New Year! You are an inspiration to us all! Lorrie
Oh Debra, (((hugs))). You have given so much comfort, encouragement, and strength!!! You are a wonderful person and a true blessing to GRACE and very worthy of what is being said!!! I'm glad to hear you are feeling ok physically and it's of no surprise that you are doing some second guessing, I think that just comes with the territory. But, you have made the best choice for you as nobody else can. Take this time to feel good and enjoy the upcoming holidays to the fullest!!!
Wishing you all the best with lots of love,
(((Debra))) I would like to agree 100% with Lisa and I don't know what to add. You're a good southern girl :)
Here's to hopes that tomorrow is a better day.
((((DEBRA)))) - - Keeping you close!!!!
Like Janine, I agree completely with Lisa, and not just because I'm required to. :)
Enjoy the holidays and know that we are keeping you close, in both our hearts and our minds.
For those of you who may follow Debra's thread here and get notices of updates, but don't see much of the GRACE site, the sad news of Debra's passing was posted here yesterday: http://cancergrace.org/topic/debra
Crushed. . .
Thank you, Jim, for making sure we didn't miss seeing that.
It is a shame how people can seem like they are managing okay and then a few weeks later they are no longer with us. But since everyone dies eventually, it is a blessing when we can pass without much distress or for long. We'll miss Debra's voice here. She was a remarkable person and an admirable "trooper" through challenges both medical and non-medical.
Craig in PA
Stage 4 ROS1+ [mucinous BAC] adenocarcinoma NSCLC since 2011
Xalkori (crizotinib) 5 yrs
Alimta (pemetrexed) + carboplatin (mere months)
TPX-0005 (repotrectinib) TBD (1+ years as of Fall 2018)
There are no words except ...... heartbroken. The fight is over.
Rest in peace dear Debra.