Dulcinea

I currently live in Glade Spring, VA, but was raised in South Milwaukee, WI. I was blown away when I saw Waukesha!! Even that made me feel better about all of this! Thank you, Dulcinea.

The worst part of this right now is WAITING! I keep picturing these nodules growing and we're not doing anything about it! My oncologist is great, and he understands my husband's and my impatience, but that does not make it any easier. I have a feeling you've been there!

Thank you for your welcome!

Thank you for posting. When I have more info, I'll put it up.

Hi Dulcinea, thank you so much! My mom is sooooo depressed and ready to give up. She has stage 3B lung cancer w/ an enlarged lymph node in the center of her chest as well as the tumor in her lung. She lost 30 pounds in 30 days before she came to live with me when she was finally diagnosed. She was extremely weak and needed a feeding tube. She has had two rounds of chemo and just finished radiation. She was to have two more rounds of chemo but that has been put on hold because the two weeks she was getting radiation, my mom and dad stayed at Hope Lodge near the hospital and although I visited daily, my dad put the clamps down and said to leave mu mom alone...therefore, she laid in bed 23 out of 24 hours of the day and barely ate. Prior to radiation I had my mother's weight up, strength was up and she was almost self sufficient (the exact opposite of how she arrived at my house in June). It was a huge improvement!!! Well, after two weeks at Hope Lodge being with my Dad, she lost 11 pounds and needs to be lifted and carried. She was scheduled for chemo this week, but, the doctors cannot give it to her with he condition. They are having us wait a month to see if she even if she does improve, it may not bean option to start chemo because she may back track and we need to start all over again and they don't know if she can survive that.

Needless to say, I have her back on using the feeding tube and giving her fluids, but, it is just a daily fight to get my Dad and one of my brothers on board. They just want her to do what she wants. Right now she is so depressed she just wants to lay in bed and starve. I can't watch that.......I follow the doctors suggestions and the visiting nurses directions. Even if she chooses she does not want to continue treatment, I still want her to have some quality of life while she is here and not lay in the bed and waste away.

Dulcinea
I so appreciate your feedback
You are right
He's scared but won't show it; instead its the outlashes we see

I have let him rage toward me for 2 months now, done everything under the sun
Reach out to drs make appts sit in chemo get correct food plants to clean air disinfected everything hired experts for rug cleans
Anything I could do

Yet he works when he shouldn't
He still bums a cigarette which thankfully has subsided
Drinking but again subsiding
Very a personality; felt I was hindering him, not helping
He's set for md Andersen should his treatment here fail as I set the wheels in motion
Called for financial help thru grants in cancer foundations
Asked his astranged family for help as I knew we were broaching days to come w no work w treatment; they will take him
He shut me out of everything so I let be for a bit and stayed w family to give space
, said I was doing things for kudos, not love; I was too overbearing, when he needs me, he'll let me know; otherwise he wants help from no one; his ivory tower
but when 1st round stopped, he raged at home in front of my children(he's step dad) and threatened us with tearing all belongings and setting house on fire
I went into fight or flight and chose flight. For our safety, I put a restraining order on him; I felt it was the only way to protect my kids as they are caught in this web of the evils of cancer too as they watch and stress.

He went back to his family in Oklahoma, had blown through treatment exceptionally until this point ironically

The strong healthy jack I knew started to feel the wrath of radiation pain
In hospital in his home town, unequipped to and his illness as was his family, bless their hearts, they took hm n but didn't know how to help hm manage his pain
No eating or drinking for 11 days, lost 22 pounds
I had no clue
His sister texted and told me his worries of his belongings and the court date automatically set
Ased if there was a way to help
After 10 days of barricading my doors, sleeping w pepper spray
I dismissed the order immediately
Asked for him to call
He was weak and had no one there with any clue other than a wet rag and strokes of love

I immediately told his family he must be in a cancer facility, they agreed and put him on a plane back to me, I set up both ends with assists to get us to the hospital ASAP as he was gray in color when he stepped off the plane
... This is day 2, impaction relieved, delatta/Vicodin regularly, starting to eat real food yesterday

Trying desperately to diregard the edge in his voice although he was himself in terms of emotion just off the plane.

So
I am going to try and redirect my feelings to the cancer and maybe someway I can be on the same plane without conflict so we don't stress each other out
Can't read him as to whether I should stay or go so doing a little of both so he has some quiet time
I hope I'm doing the right thing; worried about....what next

Thanks for your reply. I must be a shopaholic because I went shopping the past 2 days. I've been buying alot of clothes for no reason. I think I'm nervous about my upcoming Tuesday meeting with the oncologist. My stomach (left side) has been bothering me lately, so I hope it's not from the pill I'm taking. Guess I'll find out from my CT scan results. In the meantime, I've been in a fairly good mood, considering all I've gone thru in the past few months.

Thanks for the message! After I learned about this group & signed in, I was hoping to correspond with many. I've sent several comments/answers, but you are the first who replied. I'm looking forward to corresponding with you. Thanks again!

Wrote on the post wall instead of your wall...wanted to say thank you for your positive words. They meant so much to me. Look forward to our next meeting.

Today was my first round of chemotherapy for large cell lung cancer and as of this even g I'm doing fine. I do not have a port at this time as my doctor thinks I can handle a new IV site each week...we'll see. As with everything there is a risk of infection with a port. Prior to the start of my treatment, I was given a steroid and anti nausea drug through my IV site. Steroids help with the inflammatory effect of the drugs. I was also give compazine to take at home if I should feel nauseous at home. Wednesday I meet with a new doctor to consult about my radiation. At this time and prior to my diagnosis last Saturday, I have had severe pain along my right rib cage, but feel this is from all the coughing the last many months. The doctors have given me a cough suppressant and that has helped. Oh yeah...I bought a wig today and the second wig shop I visited. The woman at the first shop seemed to sell to a people of a different need...ha! So..my journey has started, yours is beginning too. I hope we can share.

Best wishes for your scan, hope it's nothing to sweat! Good luck to you!!

Dulcinea would like to communicate with you more about your trials and tribulations am stage lllA facing possible surgery have biopsy on lymph nodes scheduled in 2 days.

Hey Dulcinea - recommended reading - Seeing The Crab - a woman with Stage IV cancer writes very well about all of the emotions that come with this type of diagnosis. It might keep you from feeling too crazy...
Best - Ruth

Do you know how big your tumor was?

Hope your Avastin infusion went well today. Please keep us up to date of the side effects you experience. May take 4-5 days before you "feel" it. I hope it works! I have a friend in Virginia that's been through four rounds of conventional chemo and just finished Avastin round with minimal improvement. They and I were not candidates for surgery, so we both have multiple tumors and have already done maximum allowed radiation. I'm running out of options, but HAVE heard good things about Avastin for SOME patients. Everyone reacts differently.
Best wishes, and I hope you're kids aren't ignoring your needs as mine (one daughter) is.

Thanks for the suggestion of l-glutamine for CIPN. Will ask my medical oncologist next visit. Just saw that you are in WI. I grew up in West Allis and my sister now lives in Muskego. Trying to figure out how things work on this website. Will try to follow your journey. Wishing you many more birthdays!

I know there is a lot to discuss with your doctor. Here is a list of medications that have helped me through the pain and nausea.
Pain: 12 hour time release oxycotin taken morning and night always keep taking this as it needs to build up a level in your system.
Pain: Liquid oxycontin .25 ml every two hours for breakthrough pain.
Nausea: Zofran for the most severe and then compazine for less nausea and ativan for anxiety and nausea
Nausea: I was started with a 3 day pack of something at the start of each chemo session. Sorry forgot the name but very strong and helpful. They will know if you ask.
Good luck!

Hi Dulcinea,
I had cistplatin and another drug but I don't remember the name. It's a very common cocktail for non small cell adenocarcinoma of the lung. I did not qualify for any drug trials.
Yes, I was not prepared for the side effects partly because I believe that they (doctors) don't want to set you up. Every one is different and responds differently and it also depends on the actual drug/s and dosage.
Are you getting the neulasta shot 24 hours after chemo for a white blood cell boost? I found that I had a lot of bone pain with that drug and someone said that taking a claritin once a day the day before Neulasta, the day of and for several days after and essentially that pain was minimal. I tried it and it did work pretty well compared to not taking the Claritin so that is one trick and pretty safe but definitely check with your chemo nurse and doctor first.
I'm glad that your company is so understanding, I think your first round of chemo should go pretty well and you should be able to keep up with work from home but I found that by the 3rd and 4th round, the effects just lasted longer and longer and I didn't bounce back quite as quickly. But that's me and you might do better. It's just something to think about because the one thing I am finding out about this whole journey is that all my best plans were completely out of my control. So the nicest thing that I am starting to do for myself is to not get too upset when my body doesn't go along with my plans and being flexible is very helpful.
You keep me posted as to your progress and stay hydrated too! I can't stress this enough. I had IV fluids for 3-5 days after chemo each session and I managed to stay out of the hospital.
This was done by keeping my port accessed and then having an IV pump and supplies, visiting critical care nursing came in to do the teaching and were available should I need anything but I managed my own port and IV's at home by myself and then I had them come in to de-access my port when I was finished after day 4 or 5.
Just things to think about.
Talk soon,
Trey

Hi Dulcinea,
Glad to hear that your surgery went well. I had that surgery back in March followed by chemotherapy and radiation treatments. I finished my last treatment September 17th and had a CT scan that was clean. So now I wait 6 months before next scan. NOT wait for 6 months, live for 6 months. Please feel free to check in with me as you travel through your next phase of treatment. I had quite a few side effects and I might be able to help should you run into trouble. I've been in your shoes not too long ago.

Glad to read things went well. Keep going. You are doing it.

Dulcinea, I read Magnums post on the power of prayer. I to was afraid when I found out about my prostate cancer. Luckily I have been on some prayer sites for a year now. I havehad the people on the sies praying for a young boy I mentor. He recently went through a brain anyoursm surgery. He was in a coma for 34 days and his heart stopped, and they were able to bring him back. Prayer has brought this little boy back. I had hundreds of people praying for him and it kept him alive. Prayer does work. These same people have been praying for me, and I know it helped me.

Good luck Dulcilnea,
I posted a response to your question, try to read it before surgery.

Dulcinea, I posted a lengthy response to your question. Please read; you are in our thoughts and I wish you well.

MAGNUM

Thinking of you good. Luck this week. Look forward to hearing a good recovery report.

Welcome. Thanks for being one of the first to register on WhatNext. Since WhatNext is new we don't have a lot of folks with non-small cell, but know that every day new people join the network and we'll email you when new matches arrive.

If you need anything (e.g., emotional support, help finding support/care resources, insights as to what to expect), please be sure to ask the network for help. You can do this by clicking on the "Ask Network" link on your logged in home page or the "Questions" link at the top of this page. When you post needs/questions using our question feature, we route your question to everyone in the network who might be able to help. Also, know you can use the "Update" feature on the site to keep anyone who might be following you on WhatNext up to date. I look forward to learning how your treatment progresses. - David, Founder, WhatNext.

Cool! Now I feel much more hip! The other day I asked a young man if he'd ever seen the Jethro Tull Aqualung album cover. There was an embarrassingly long pause and then he said "no". Of course not! He probably doesn't even know what an album is.

Thanks!

Thanks, and let me push my luck...How did children become sprogs? I love etymology. Could it be a contraction for "Sprung from my loins"?

Sprogs? ;-)

Is it your real name?

Dulcinea, really? I find it very interesting that you would choose this as a screen name. Are you familiar with the story of Don Quixote?

Hi, thanks for the welcome !!! Still hanging in for almost a year, more trouble with side effects,but blessed to still be around !

Looks like you're as klutzy as I am! Hope your elbow is better! What did the doctors see on your petscan? I was questionning my lymph nodes because when I had radiation in the back, some nodes could have been zapped also. The oncologist stated that it is hard to see the nodes. Some get large and some are too small to see the cancer cells, even with a petscan. By the way, how frequest is your petscan? I initially heard every 3 months, but the oncologist thinks it would be 2x/year based on insurance.

I'm going for my mammogram tomorrow and I dread it. Between the back & lung surgury (draining of fluid & adding talc), it is going to be painful on the left side. Ugh! I cancelled a few times already. Someone told me that she took her mammo after learning about her lung cancer. Turns out that she has breast cancer also.

I used to crochet, but I don't watch TV, so I play games on the computer. I'm also fixing up the house. A few years ago, I started going to estate sales and auctions. I have too much stuff!!! I'm doing volunteer work at a hospital's upscale consignment store and I'm consigning alot of my stuff. Last week I bought these new thin hangers to rehang my clothes. I didn't realize that I had so many clothes. Guess I kept my old stuff. I also lost about 20 lbs. since last year and I have several sizes (never dreamed that it was caused by cancer because I stopped losing at the weight I was years ago...still don't know if it was caused by cancer). I golfed 3x/week last year and haven't had the opportunity to go this yearl I tried putting a few days ago.

Take care of yourself. I will keep you in my throughts & prayers.