Mom finished her 22 days of radiation on August 14th. Since then, she's experienced almost ALL of the side effects they warned us about. Her head was very burned and the redness appeared during the last week of radiation treatment. It actually got worse once treatment was completed, and just over the past few days I've finally noticed her scalp drying out & almost peeling as if it's an old sunburn. The worst of the side effects was the burning inside her ears. I'm assuming the radiation rays got inside her ears causing the skin inside to burn. She experienced fluid draining and some hearing problems, as well as an ear infection. Also, her headaches have not gotten much better.

Poor Mom...these headaches have been torturing her now for over 3 months. Now, the radiation, although I'm sure effective on attacking the cancer cells in her brain, also has caused fluid retention in her brain which causes more throbbing headaches. Her blood pressure has become very high. Mom and I have always had very low blood pressure. But Mom's has been extremely high lately. The doctor thinks this is either the cause or the effect of the headaches. Now she's also on blood pressure medication. Her pain medication has been upped to small doses of Morphine, but only when the pain is unbearable.

The doctors also warned of some temporary memory loss. Mom has started to notice that she can't remember simple things. I was with her the other night and witnessed her struggling a bit to tell me things or do things.

I'm amazed at what she's suffered through lately while still having a great attitude. To add to everything else, she has lost muscle strength in her legs. She almost can't bend down to pick up things. Recently she's gone outside to pick up the paper and once she's down, she's had to crawl back up the porch. A few weeks ago she needed my help getting back up from getting something out of the bottom drawer in the fridge.

She was given steroids to help relieve the water retention in her head, and we were told that the side effects would be muscle loss. This past week however, her doctor explained that the muscle loss could also be from the radiation. The radiation affects the brain's communication with the rest of the body. He explained that it is temporary and that she will regain her strength.

There's been so much to deal with lately with all these side effects hitting AFTER radiation and all at once, but Mom just keeps pushing through. Thankfully, this is all supposed to be temporary. We look forward to the coming weeks when symptoms ease up and we regain some bit of normalcy. =)

Patti B. -- I was just wondering if you experienced any of these side effects towards the end of your radiation? As for Mom's radiation...I think one of the doctors there developed a crush on her! LOL He kept asking her what the youngest age was that she'd date. So cute! Mom brought her radiologists treats every Friday. On her last day they took a picture with her & made her do a gangster pose with them. Made her turn her hat backwards & throw up a sign. TOO FUNNY! These guys were ALL humor. It was enjoyable for Mom to look forward to seeing them every day. On her last day they gave her a Certificate of Completion! If I could figure out how to post more than one picture, I'd upload that picture here on my profile. It's framed & on my fridge now. =)

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*PROFILE PIC: Mom and I at my cousin's wedding, 2004.
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3/07 59-yr-young Mom developed chronic cough & flu symptoms. SOB. Can't keep meals down. Dx with pneumonia & bronchitis. Antibiotics aren't working.
5/8/07 Mom DEMANDED chest xray. Large white mass on left lung.
5/10/07 Thorecentesis. Pleural effusion.
5/11/07 CT scan. Left lung showed 80% filled.
5/24/07 Bronchoscopy found cancer cells.
6/5/07 PET scan
6/7/07 Dx Adrenocarcinoma, NSCLC Stage IV, nods found in left lobe, pluera, lymph, adrenal glands.
6/14/07 1st carbo/gemzar. A little nausea. Not so bad. =)
6/21/07 Gemzar. No side effects.
6/22 - 6/27 Feeling better, breathing easier.
6/28/07 VERY tired, no energy. Blood counts VERY low. Plat down to 27. WBC low.
7/5/07 All counts WAY UP! Platelets back to 385!!
7/16/07 Fever. Blood work ordered.
7/17/07 MRI, x-ray AND blood work.
7/19/07 Blood transfusion
7/20 Fever 103 / ER Admitted & stayed in hosp. MRI was CLEAR! Potassium, protein very low. Absess found around tumor in left lobe. Hospitalized 11 days!
8/10/07 Changed to new oncologist. Got to know him in the hospital and he's local. We LIKE him A LOT!
8/23 Back on chemo. Carbo/Gemzar.
9/5 Went in for port but all counts too low. Mom feels GREAT! Spunky & normal energy! Dr.s are amazed!
9/10/07 Port implant proceudre
9/15/07 Port seems to have infection. Redness, swelling.
9/27/07 Received chemo through port.
9/28/07 Blood transfusion. Red blood cells too low yesterday.
10/18/07 Lower dose of Gemzar only. Tumor is responding WELL to chemo!
10/19/07 Rcvd. Nuelesta shot for white blood cells.
10/18/07 Completed 6th cycle of chemo.
10/25 Blood work shows very low platelets (again)
10/26 Platlet transfussion & CT scan to reassess. Oncologist calls and says original tumor has shrunk DRASTICALLY. Good news short lived....also found a blood clot in lung.
10/27 ER visit - Starts Coumadin
11/1/07 5 cycles completed of gemzar/carbo. Time to stop chemo.
11/12/07 Pulmonary says Mom is very healthy. Looks great.
2/07 Life has almost returned to normal...latest CT scan shows that cancer is almost undetectable. Breathing is practically normal aside from little wheezing from a cold. Mom is working out, walking & back at the gym. Our trip to Jamaica is coming up in May 08!
May 08 -- Mom, her sister, her niece, myself, my 2 young daughters all go to JAMAICA to visit our family home & cousins. Had the time of our lives! I left the island first & promised her....we're coming back next year!
June 08 -- CT scan shows a little growth in original tumor. (Original tumor was 5cm..reduced to 11mm after chemo....now is at 13mm) Dr. wants to wait until PET scan & then start chemo again in August.
August 08 *Officially in remission. No treatment suggested.
Jan 09 -- CT scan shows spots on spine and pelvic bone.
Jan 22-09 -- Bone scan results discussed with onc. Spots are cancerous cell activity on spine and pelvic bone.
Jan - Apr 09 - 5 cycles of Carbo/Taxol -- Waiting for Blue Cross to approve Avastin.
June 09 Genetech is providing Avastin for FREE. Starts Avastin.
June-July 09 - Headaches. Jolts of pain in head.
7/7 - MRI, shows multiple brain mets
7/15 - meet with radiologist. WBR starts tomorrow. The plan is 22 treatments. Mom starts taking Decadron for fluid retention which might be the cause of headaches.
8/15- finished radiation, no side effects other than burning on scalp.
Sept 09 - Still has strong headaches. Put o Decadron steroid for headaches.
Sept 09 - Another MRI ordered because of headaches. MRI shows shrinking of tumors.
9/30- Finished Decadron. Starts Hydromorphone for pain. Every 4 hours for headaches.
10/8 - Very confused. Has difficulty forming sentences. No short-term memory.
10/10 - 10/12 - Hallucinating, delusional, talking to no one, staring at ceiling. Onc says could be brain swelling, overmedicated or tumor growth. Wants MRI. Pulmonary says this is it, asks if I want her in the hospital or home with hospice. I'm not ready for hospice, either is she. I want test results before we talk about hospice!
Taken to ER. Admitted.
10/13 - CT scan, MRI in hospital. Showing clarity again...No pain pills since 12pm 10/12. No coincidence that she's becoming clear again?
10/15 - Released from hospital. Two dr.'s don't agree on prognosis. I'm going with the oncologist who says, there is concern from MRI results, but that we have not given up. New Primary dr. assigned.
10/20 Mom has not completely recovered. Still shows dementia type symptoms. Very confused. Will drink protein shakes and take meds for us, but can't do anything else on her own.
10/26 Mom is mentally not there anymore. It's as if she has suffered brain damage. We don't know why. Appt with onc. MRI shows tumors are stable and cancer in lung, stomach, bone is mutating again, but not spreading quickly. Wants to start Tarceva, but we have to figure out what's going on with her brain.
10/30 Appt with radiologist AND oncologist together. It could be a chemical imbalance. This is not from radiation, but maybe the combination of everything. Prescribed Provigil to improve brain functioning.
11/1 Mom falls out of bed. No muscle. No physical strength. Atrophy has set in. Mom is on Medicare as of today. No more Blue Cross!! Yeah!
11/2 Starts Provigil.
11/3 Mom falls out of bed again. Ordering hospital bed. Need to find home health care. Needs to get her strength back before we start Tarceva.
11/5 - 11/15 Mom admitted to hospital. Pain, chronic constipation, unable to move. Dr.'s run tests to find reason for neurological problems - decide it's brain tumors that have continued growing.
11/15 Mom comes home with hospice
11/28/09 Mom leaves this world, this human life.... to join her sister, brother and mother.

I'm sure Patti will be posting soon and will be very helpful. I don't have any experience with radiation side effects since my hubby is just on chemo, but I wanted to tell you that I think you're a wonderful caring daughter and I wish the best for your Mom! I'm sure you'll be relived when these nasty side effects begin to subside. Take care!

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Jan 09 husband diagnosed with stage 3 adenocarcinoma.
Oct 09 passed peacefully at home after enduring a very difficult battle. I miss him dearly.

You are a wonderful, caring daughter. I know exactly what the radiation of over 20 zaps can do. My husband has survived them. His last WBR was over two years ago. So far, not one met has returned.

Yes, he had a ribbon of fluid in his brain as a result of that, but it has increased/decreased over the past two years. His short term memory has been an off and on again issue, but he can still do many of the things he once did of a mental nature. In fact, he does better when I cannot resolve the checking account, and completes it in fine fashion.

I worried so much that he would become mentally deficient. He has some problems, but nothing as were described in "worse case scenario." His humor is still intact. His ability to "push buttons" has never been erased.

Wishing you good vibes and please know that your caring and assistance is what has added greatly to your Mom's support.

Much success,

Barbara

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Bill died peacefully on March 25, 2010. He was very much loved, and will be sorely missed.

Link to "Bill's Story," and more detailed list of treatment regimens:

http://www.lungevity.org/l_community/viewtopic.php?t=37269

Photo: Barbara and Great Granddaughter KayMarie taken January 2010 at Rehab where Bill was gaining strength.

The headaches and high blood pressure appeared in my mom with Avastin therapy. Is your mom still on Avastin?

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Daughter of wonderful lady, age 63, diag. NSCLC stage IV, inoperable (4-04),
began Gemzar-Carboplatin-Velcade clinical trial 4-30-04.
9-04 90% response to chemo, will remain on Velcade for maintenance.
10-04 Velcade not effective, starting Alimta in early Nov
1-05 continuing progression of dz, starting Iressa.
2-05 More dz progression, beginning Taxol.
5-05 Stable, but onc wants to try Avastin.
5-05 Avastin/Carbo/Taxol
7-05 improvment in both lungs, but continual headache. Skipping Avastin for now.
8-05 hospitalized with severe headache and vertigo. Cause unknown.
10-05 Carbo/Taxol 6th cycle done. 20% reduction in nodules in both lungs. On chemo holiday for up to 8 weeks to build up reserves for next chemo regimen.
11-05 Well, it was a short holiday! More progression of disease. Now taking weekly Navelbine infusions.
3/06 Took last Navelbine, now problems with pneumonia. traveling to tX to visit son & family.
3/06 It's not pneumonia, it's more cancer spread. worse than last scan 2 weeks prior. Starting Tarceva
4/06 After 4 days of Tarceva, decided to check with MD Anderson. Awaiting word from them.
4/06 After consult with onc, decided to give Tarceva a shot. Less toxic than other chemo available for her now, even clinical trials.
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4/24/06 Mom passed from this earth peacefully. God rest her soul.
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1-15-06 Lost my dad to melanoma.
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"Twirl me about and turn me around. Let me grow dizzy and fall to the ground. And when I look up at you looking down, tell me it was only a dream." mary chapin carpenter

Hi Tova-

I am so sorry that your mom is experiencing the bad side effects of the radiation. That was something I was so afraid of and actually had a meltdown the first day of radiation because I worried so much who would I be after this was all over. I am, however, on a clinical trial using an approved Alzhemiers drug to see if it will help stop the loss of cognitive thinking after WBR. Its a double blind, so I don't really know if I am taking it or not.

I am almost feeling guilty saying that I really had very few side effects at all. My head burned like a sunburn and my forehead, even though the mask was on, had huge dark tanned blotches which I did manage to scrub off. Behind my ears peeled terribly. I did have some headaches and earaches but I took the steroid for two weeks and am already tapered off of it. I really feel good and have already had two chemo sessions.

I ended on a Friday and on Monday Chris from Mass came to visit me and we ran like teenagers. Maybe it was the steroid that gave me so much energy.

At Cleveland Clinic, they have a bell that looks like a ships bell mounted on the wall. Your last day, all the techs walk you out to the lobby and you get to ring the bell!!! Its kinds cute altho I just wanted to get home and cut off the rest of my hair that was falling all around me.

I am hoping and praying that your mom starts to feel better soon. Please let me know how she continues to do.

Hugs - Patti B.

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My personal war against cancer:
Stage IV at diagnosis 9/29/06- told 12 months tops.......yeah, right!!!
5 rounds of radiation R hip
15 Whole brain radiation txs 7/20 - 8/7/09
8 weeks on oral Tarceva
To date, 80 IV chemo sessions and still counting
Chemos have consisted of:
Carbo/Taxol/Avastin
Avastin alone
Alimta
weekly Navalbine
weekly Gemzar, now on Gemzar every other week due to blood counts
All my veins have become inaccessible - port installed 12/30/09
Put on Alimta/Avastin as a combo
Currently on Taxotere, on 3 weeks off one

Tova-

I just re-read your original post and realized that your mom had 22 treatments. I had only 15 so maybe thats the difference. It will probably take longer for her to get back on track than me.

And, yes, I was on Avastin and now having high blood pressure. It started out with horrid headaches. High BP unfortunately is a side effect of
Avastin. I have been off of it for over a year and still cannot come of the Norvasc and Atenelol. Guess once you have it, you have it for good!!!

Once again, Hugs and prayers for you and Mom.

Patti B

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My personal war against cancer:
Stage IV at diagnosis 9/29/06- told 12 months tops.......yeah, right!!!
5 rounds of radiation R hip
15 Whole brain radiation txs 7/20 - 8/7/09
8 weeks on oral Tarceva
To date, 80 IV chemo sessions and still counting
Chemos have consisted of:
Carbo/Taxol/Avastin
Avastin alone
Alimta
weekly Navalbine
weekly Gemzar, now on Gemzar every other week due to blood counts
All my veins have become inaccessible - port installed 12/30/09
Put on Alimta/Avastin as a combo
Currently on Taxotere, on 3 weeks off one

My husband had WBR and the majority of the side effects didn't hit until afterward. He had hearing loss prior but it was definately worse. His scalp peeled and so did the inside of his ears, no draining though. Didn't really experience fluid on the brain from it but was on steroids the majority of the time. Good Luck and hang in there... I really can't imagine how difficult it is for the patient. I admire the positive attitudes!