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PostPosted: Tue Sep 26, 2006 9:07 pm 

Joined: Tue Sep 26, 2006 8:47 pm
Posts: 1
Location: Illinois
My father has recently been diagnosed with stage IV non small cell lung cancer which has mets to his brain (about 16 small lesions over three different areas of the brain), stomach and liver. He started chemo (two treatments of taxol/carboplatin so far) and radiation (ten treatments) about four weeks ago and has been experiencing all the side effects including extreme fatigue, loss appetite, changes to his sense of taste, mouth sores, yeast infections, red itchy scalp, numbness in feet and legs. However, over the last two weeks he's been experiencing increasing pain in his legs - he says it feels like he's walking on rocks and his calves and thighs are severely cramped. I'm wondering if anyone else has seen this happen. We're going in for an mri of his spine on Thursday, but I'm worried sick that the cancer has continued to spread. An x-ray from one week ago of his lung shows that the lung tumor is still increasing in size. (Initially it was the size of a baseball.) Also wondering for people who have been with those affected by brain cancer - my dad seems to be getting a bit more confused and the "pressure" in his head is increasing. Is this a precusor to more bad news? Thanks for any insights.

8-26-06: Dad diagnosed with NSCLC Stage IV - mets to brain, stomach and liver
8-29-06: taxol/carboplatin - every three weeks for six treatments
9-5-06: begin 10 radiation treatments for brain tumors
9-20-06: chest x-ray shows lung tumor is increasing in size
9-25-06 extreme fatigue continues along with severe leg pain

 Post subject:
PostPosted: Tue Sep 26, 2006 9:26 pm 
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Joined: Sun Jun 06, 2004 6:58 pm
Posts: 3053
Location: TN
Welcome to the site. Sorry you need us. But, we understand and are here to help.

My first thought on the legs is possible blood clots. My husband had several and was on blood thinners to keep them from occurring.

They normally do leg ultrasounds to look for them. I would suggest he be checked right away. Blood clots are very serious. Praying for your dad's treatments to start working and for the doctors to have wisdom with his situation. Take care.

God Bless You!


"Charlie didn't let life happen to him, he let life happen through him." Rev. Joe Green, 4/19/06

Husband Charlie, lived 27 months with stage IV NSCLC, adenocarcinoma,
51 yo at diagnosis; 53 at death
daughters now 19 & 13, niece 16
DX 01/09/04, Died 04/16/06 (Easter Sunday)
Treatments: (1) Carbo/Gemzar & radiation, (2) Navelbine and rad to neck lymph node, (3) Vanderbilt clinical trial of Targretin, (4)Alimta, (5) Tarceva, (6)Taxotere & rad to lymph node next to aorta, (7) Gemzar, (8)Etoposide, Carbo and Avastin with brachytherapy for bronchial tumors, and (9) CPT-11.

03/17/06 Charlie able to go with Rachel to get her "dream car"
04/16/06 Easter Sunday - taken to Heaven after having been able to go to our church drama on Saturday, helping me make Easter deviled eggs Sunday morning, enjoying a good family dinner and long talk with his dad in Florida
My Uncle Dave, SCLC, died in Feb. 2007.
My Dad, SCLC 06/11/07, 86 years old, quit smoking 32 years ago; 8/1/07 signed up with Hospice; passed to Heaven on 10/08/07.
Aunt Catherine, brain tumor, died in Feb. 2008

Feb. 28, 2008: My Mom likely has NSCLC
Mid-March: PET shows high SUVs; she is not healthy enough for biopsy or treatment; she falls and gets a bad leg wound and infection; aggressive daily painful treatments to save her leg.
June 10: CT shows stable disease; leg wound finally healing.
Sept: CT shows progression.
Late Dec. 2008: admitted to hospital for shortness of breath. Radiation started due to tumor pressing on her spine. Goes home on New Year's Day. Admitted to Hospice a few days later as palliative rad. continues for 3 weeks.
Late Jan. 2009: falls and breaks hip; repaired the next day and goes to rehab. facil. 4 days later...AMAZING!
Ups and downs at rehab. facil.
Transferred to Hospice House - wonderful people!
April 6, 2009 - my mom passes on with my brother and I by her side

 Post subject:
PostPosted: Tue Sep 26, 2006 10:37 pm 
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Joined: Wed Jun 07, 2006 8:05 pm
Posts: 260
Location: Massachusetts
Hey There,

So sorry that you had to find us here - but welcome. This is an awesome site where you can find a plethora of information as well as vent or have a shoulder to cry on if need be.

My Father had 3 lesions in his brain and that was taken care of by gammaknife. I'm not sure if there is a limit to the number of lesions there are to gammanife not being an option. I know that when my Father's lesions were first discovered, he was put on the steroid Decadron. It is used to reduce the swelling in the brain. Is your Father taking this? If so, I know for my Father and for numerous other members on this board, the side effect is weakness in the legs (which makes climbing stairs extremely difficult).

Cyberknife is also pretty good for liver mets. Unfortunately it hasn't worked for my Father considering his were quite large at the time of treatment.

Tarceva is also an excellent drug. It has shown to be the most effective on people who have not smoked.

Good luck,

March 2005 - Diagnosed with Stage 4 non small cell lung cancer with mets to the liver and tailbone
March 2005 - started chemo - Taxo/Carbo combo (for a few rounds CT scans showed shrinkage in lung tumor and stabilization for liver tumors)
June 2005 - CT scan showed that lung tumor is stable but progression in liver tumor - Alimta added to the regime
July 2005 - Hospitalized for pnuemonia
Aug. 2005 - CT scan of the head. No brain mets.
Sept. 2005 - CT scans show that lung tumor is stable but liver tumor is still progressing - Started Tarceva.
Nov. 2005 - CT scan showed lung tumor stable and shrinkage in liver tumor
Jan. 2006 - same as above
April 2006 - same as above
May 2006 - Dad had fevers for the last week accompanied by headaches - scheduled a CT scan for chest and head.
June 1, 2006 - CT scan showed lung tumor stable but liver tumor nearly doubled.
June 2, 2006 - Brain met detected (1 cm)
June 14, 2006 - increased dose of Tarceva to 300 mg - not tolerated well and decreased back to 150 mg. after five days on 300 mg. He also took a 3 day break from Tarceva altogether.
June 20, 2006 - MRI of the brain scheduled and apt with neurosurgeon. 3 brain lesions. One lesion is 1 cm, the other two are the size of grains of rice. Gammaknife scheduled for June 30th.
June 27th - Met with oncologist. No treatment options. Just cont. 150 mg of Tarceva.
June 30th - Gammaknife. Dad tolerated it well. No side effects. Follow up visit and MRI scheduled for Aug. 24th to see if it worked.
July 3rd - 2nd opinion at Commonwealth Hem & Onc. Given 3 options for the liver mets. Spheres, RFA or chemo. We chose RFA. Dr. will get apt at Brigham's.
July 6th- Going for 3rd opinion at Beth Israel. Dr. reviewed record and think cyberknife may help the liver mets.
July 20th - Seed placement for cyberknife
Aug. 4th, 7th & 8th cyberknife treatment - fatigue (Sept. 12th follow up apt with CT)

Sept. 3rd - Hospitalized for high fever & diag with pneumonia. High fevers cont with high white blood cell counts. CT scans show that cyberknife has not been successfull and there's been extreme progression of disease
Sept. 17 - sent home with hospice
Oct. 9th - Nose bleed for 12 hrs. admitted to the hospital. Platelets low - transfusions done
Oct. 12th - My Father joined the ranks of many Angels after his fast pass to Heaven. "Only the good die young."

 Post subject:
PostPosted: Wed Sep 27, 2006 6:27 am 
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Joined: Thu Apr 13, 2006 3:57 pm
Posts: 2314
Hello Laverne and welcome
Sorry you have reason to find a site like this, but glad you have joined us.
I am sorry, I have no answers for you but I am sure you will continue to get a lot of great advice.
Please keep posting and let us know how we can help.


 Post subject:
PostPosted: Wed Sep 27, 2006 8:02 am 
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Joined: Sat Jan 08, 2005 8:13 pm
Posts: 6760
Location: Voorhees, NJ (near Philly)
Just wanted to welcome you. So sorry about your dad diagnosis. I know how scared you must be.

I have no experience with leisons of the brain, but you are already getting some good infomation.

Just know that we are here for you 24/7. You do not have to go through this alone.

Keep the faith as faith doesn't get you around trouble it gets your through it.


"Life is not measured by the number of breaths we take...but by the moments that takes our breath away"
Husband Joel, 58 dx 10/18/04 Smoker since age 15 stopped when diagnosed
Adenocarcinoma- stage 1B
Lobectomy Left upper lobe on 12/15/04
biopsy on lymph nodes - negative NED
1/13/04 Oncologist appt.to see about preventive Chemo.
Cancelled due to chronic fatigue
1/12 fentynal patch for pain
1/14 discontinued Fentynal patch bad reaction
1/15 Blood test showed high T levels
2/1 Endoconrinologist visit diagnosed over-active thyroid
2/8/05 took Radioactive Iodine to kill thyroid
2/16/05 appetite back, fatigue leaving
2/24/05 visit with Pulmonary Doc. Breathing at 96% capacity,
Next visit 3 mos.
3/9/05 Endocrinologist visit -T levels went from 25 down to 5.
3/30 started Synthoid(thyroid med)
3/31 Oncologist. appt. CT results NED...
4/14 starting adjunctive Chemo (carbo/taxol) 4 treatments
3 weeks apart.
6/15/05 Joel finished chemo, chest X-ray clear, Next CT in August
9/01/05 1st CT since Chemo.. NED
11/17/05 CT - small nodule found 4 or 5 mil. in his good lung
1/10/06 CT - nodule Stable
7/2006 CT/ Nodule stable
10/2006 CT Nodule seem to have grown from 4 to 7 mil.
10/2006 Pet- showed some uptake
10/2006- operation- wedge section right upper lobe turned out to be cancerous 2 nodules next to each other. 2 different types of cancer. 1 squamous cell carcinoma (new primary)2- adenocarcinoma-(not sure if new primary or metastasis)
May be restaged to IIIB
11/07/2006 will start 4 rounds of taxotere. 3 weeks apart. Will take Decadron before, day of and day after. Will get a shot of Leunesta the day after. Here we go again.. Joel's attitude.... great as usual
Horrible reaction to the neulasta shots. One night(New Years eve) went to ER. Spent 3 days in hosptal.
Feb 2007 finished chemo.
March 2007 had his CT .. as expected right now all is clear.
June 2007 NED!!!
Sept 07- CT- small nodule 3.5 mm
Going to do another CT in 6 weeks.
October 07- CT done, results STABLE...YEA
Jan. 2008... STABLE!!!
April 2008 little growth but still called stable
July 17 208 nodule doubled in size to 9mm. Needs Pet Scan, tests, hopefully cyberknife...
July 29 met with his surgeon... said Cyberknife is the way to go.
August 1- Cyberknife visit... Joel is a canidate, its a go...Happy B-day Joel...
Sept 22, 2008 finshed up the last of 3 cyberknife procedures
Nov. had CT scan
Nov. 9th results of CT from Cyberknife..... Tumor completely gone... right now NED!!!
Feb. 09- Pet/CT results. . . NEd!!!
May 09 Pet/CT results. . . NED!!!
Sept. 09 Pet/CT results.....NED!!
Jan. 2010--- NED!! Pet now will be every 6 months.
June 8,2010 Pet scan on our Anniversary... hope thats a good sign..
June 17, NED!!!
Dec. 30,2010... NED!!!
June 20,2011... NED!!!
March 2012....NED!!!

pic of Joel and our daughter Nicole at walk NOV. 07



 Post subject:
PostPosted: Wed Sep 27, 2006 8:29 am 
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Joined: Mon Sep 11, 2006 8:55 pm
Posts: 1056
Location: Naples Florida
Hi Laverne,

I had stage IV and had Carboplatin and Taxol plus Tarveva 100mg day. Tarceva and Avastin have help a lot of people, you might ask about them.

I had no bad side effects from any of my chemo. I take a lot of supplements and drink lots of water.

If you have any questions let us know. there are lots of us here to help. Stay positive.


[size=75]Photo: Wife Carol. Myself and my Mooney Ovation

Turned 70 March 2007

7/6/05 Annual physical, was told I was in great shape. Requested an X-Ray.
7/7/05 X-Ray showed fluid in right lung area.
7/8/05 CT scan showed tumor 2.4 cm
7/15/05 Fluid about a cup of fluid drained for biopsy. It was malignant.
7/18/05 PET scan positive showed main tumor plus many nodules. Said it looked like someone took a paint brush and flicked it inside my lung. Was told that it was inoperable. Stage IIIb or IV nsclc with a pleural effusion of the right lung.
8/1/05 Second opinion at Sloan Kettering. Agreed with planned treatment of Carboplatin and Taxol. Only thing they would do different would be to drain the fluid from the chest area. I asked if the fluid would go away by itself and was told “Not a Chanceâ€

 Post subject: Dad
PostPosted: Wed Sep 27, 2006 9:53 am 
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Joined: Thu Jan 09, 2003 3:29 pm
Posts: 9879
Location: Houston, TX
Welcome. I agree that it could be blood clots. He should notify his onc right away. I assume he is not getting radiation to that area, which also could cause pain temporarily. Don

72-yr old, married 47 yrs. Wife Lucie diag. 10/02 NSCLC (adeno carcinoma) w. multiple bone mets (skull, rib, upper spine, left hip and right fibula); non-smoker.

Radiation: 10-12/02 (spine, fibula); 03-04/03 (hip); 06/03 (sacrum); 07/04 (rib); 12/04 (skull); 04-05/05 (right fibula - recurrence).

Chemo: (Carboplatin/Taxotere), 02-05/03 - effective in reducing tumors; 07-12/04 (Navelbine) to treat recurrence in other lung, lymph nodes, rib - effective in reducing tumors; 08-12/05 (Navelbine/Gemzar) to treat recurrence in hip sacrum, spine, rib, shoulder, and liver - held everything stable; Alimta 2-4/06 - no effect; Carboplatin/Taxol/Avastin,5-9/06 - effective in reducing tumors.
Zometa monthly for bone strength.

Staph infection, systemic, 12/02 - second port-a-cath installed. Bilateral pneumonia, 08/03. Septic staff infection, congestive heart failure, 09/06 - deceased

I am 11-yr. prostate cancer survivor, Stage II (two bouts). Also 9 yr. heart bypass surgery survivor.

Avatar Pic: Don & Lucie, 02/06

 Post subject:
PostPosted: Wed Sep 27, 2006 12:51 pm 
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Joined: Mon Jun 28, 2004 10:40 am
Posts: 1807
Welcome. I thought of decadron immediately, the steroid usualy used to reduce brain swelling. This is a very common side effect of the drug. Best of luck helping him !!!


Mom, age 50, diagnosed with inoperable IIIa adenocarcinoma May 2004. Taking radiation and chemo. Upcoming rescans on July 6th, patiently waiting..
July 6 scans showed tumor reduced by 50%, but from the inside out, so still inoperable.
Continue radiation to the max (7000 rads) and chemo.
August-mom having a very tough time eating because of esophogus pain. Finished radiation end of July, so hopefully she can eat soon-she is hungry!! Sept 04-end of chemo/rad. Scans show that she is in remission. Dec 28 04 mom has been feeling fine until today when she had a seizure for the 1st time in her life. ER CT scan reveals at least 2 lesions on her brain. MRI shows 3 mets, began WBR on Dec 29. Dr says they will gamma knife later if any more mets appear. CT scan shows met on T-12 (spine) and back in lung. Alimta started Jan 18. She is so strong!! Mom had stereotactic radiosurgery on her brain in April and again in August. Radiosurgeon tends to think the surgery was successful, so he treated a new met in August. Mom had 6 Alimta treatments which has held her stable. She has not had any treatment for her spine met, but has a lot of pain in her back. Upcoming scan results on 8-16-05. CT scans and MRIs indicate stable lung disease, except for the brain mets. She is so brave!! 10-27-05 4 of the 5 brain mets were successfully treated with stereotactic radiosugery. 1 met still contankerous (right post frontal lobe) and causing her loss of mobility, her left side is uncontrollable. Upcoming treatment to be hyperbaric oxygen therapy if rad. necrosis or brain brachytherapy if tumor growth. 1-9-06 Mom had brain surgery to remove the necrosis. Dr. also found tumor growth whic he removed and implanted 35 brachytherapy seeds. Mom is in rehab hospital trying to relearn everything. Expected release date is 2-16-06. Mom left the inpatient rehab to go to a step down unit in a nursing home. I hate her being there with everything I am. Mom is coming "home" to live with me June 22. Mom is systemically better off than she has been in a long time, but she only has movement of her right side and confusion. We call her "Rocky". She is amazing... Mom came home to live with me on June 22. We had a few really wonderful weeks until she had knots forming on the side of her head. MRI confirms she has tumors growing all over her brain, under her skin, etc. Dr. referred her to in-home hospice. I love her with all my heart. 9-18-06 Mama left this world to be with our Lord. I will never stop missing her, loving her, and being proud to have been her daughter.

 Post subject:
PostPosted: Wed Sep 27, 2006 1:32 pm 
Over 100 Posts!

Joined: Thu Jul 06, 2006 6:34 pm
Posts: 149
Hi Laverne, and welcome,

So sorry about your Dads DX. I can see you have already received some good advice from the wonderful folks on this board.

My very best to you and your family,


 Post subject:
PostPosted: Wed Sep 27, 2006 4:07 pm 
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Joined: Sun Dec 07, 2003 11:11 am
Posts: 3949
Location: Hoquiam, Wa
Hi Laverne, welcome.

I am sorry to hear about your dad's diagnosis.

I had leg cramps at night when I had carboplatin/gemzar, but I think your dad's situation is different. Gamma knife and cyberknife are very similar in outcome and accuracy, but cyberknife does not require a head frame while gamma knife does. I have heard of up to 11 small brain lesions being treated with cyberknife, but that is probably unusual. Here is a link to a message board that is staffed by radiation oncologists who practice cyberknife. They answer within 24 hours and will answer questions about cyberknife or treatment in general.


I hope your dad gets good shrinkage on this round of treatment.

Don M

10-31-03 CT. My profile was getting too long so I moved it to my story.

http://www.lungevity.org/l_community/vi ... hp?t=37417


 Post subject:
PostPosted: Wed Sep 27, 2006 5:37 pm 
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Joined: Sat Jan 11, 2003 11:02 am
Posts: 8686
Location: Michigan
I can't add much to the great advice you've been given-- just want to say welcome. Drinking water helps with the muscle pain from the chemo also. I hope the treatment helps your dad.

Life is what happens to you while you're busy making other plans.
John Lennon

"Never, never, never give up." Winston Churchill

"I rang for ice, but this is ridiculous." -Madeline Talmadge-Astor, as she was being helped off the Titanic

"Losing love is like a window in your heart, everybody sees you're blown apart, everybody sees the wind blow". Paul Simon

Husband John has NSCLC-Vena Cava Syndrome Stage 3B, Dx 6/02
Iressa started 3/03
10/03 Stable CT scan
1/04 CT Still stable.
3/04 PET Scan, Still stable.
7/04 Still stable
1/05 Still stable
1/30/05 Iressa discontinued Started Tarceva, still stable 7/05
1/06 Slight increase in tumor, stopping Tarceva.
1/27/06 Started Alimta
5/5/06 Avastin added to Alimta
6/14/06 Stable, continue w/ Avastin
1/29/07 Shrinkage! Continue w/ Avasin.
7/07- Something new on the CT scan, doing a bronc 7/25/07 to see what it is. 8/21/07 begins brachytherapy. Next treatment postponed until 9/6/7 due to an infection which is making him too ill for the procedure. 9/13/07 Diagnosed with Aspergillus. Has brachytherapy 9/20/07. Developed a pericardial effusion, 10/30/07 has a pericardial window to drain the fluid. Procedure goes well but he passes away 10/31/07 due to a pulmonary hemorrhage.
Pic is me and daughter Jillian aka The Jillinator.

Visit Walk the Walk:

 Post subject:
PostPosted: Thu Sep 28, 2006 8:48 am 
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Joined: Tue Aug 15, 2006 2:22 pm
Posts: 1138
Location: Cheltenham, PA
Hi Laverne,
I had the same chemo combo as your dad and one of the side effects for me was leg pain. Mine was mostly in my calves and usually went away after 4 days - but I got it back again every time I got chemo! Good luck with the MRI. Please keep us posted.


Picture is me and my big brother Tommy who also has lung cancer.(June 2006)
Sadly, Tommy was called home 6/29/2008. May he rest in peace.

12/28/05: Admitted to hospital for L pleural effusion.
12/29/05:1400cc's drained from L lung, biopsy revealed adenocarcinoma. CT, MRI, ultrasound, and bone scan revealed multiple small pleural lesions bilateraly, several small liver lesions, and 1 small lesion on lumbar spine. Largest lesion is approximately 2 cm (on spine), all lung lesions are mm's.
1/23/06:Second opinion at Fox Chase Cancer Center - agrees with initial diagnosis Stage lV NSCLC Adenocarcinoma
1/24/06:Pet scan confirms findings on CT & MRI
1/27/06:CT directed needle biopsy of liver confirms original diagnosis of Adenocarcinoma.
2/6/06:Started Carbo/Taxol/Avastin every 21 days for 6 cycles.
2/9/06:Portacath placement for chemotherapy.
3/3/06:Started IV Vitamin C 3times/week.
3/21/06:CT revealed lung nodules are shrinking.
4/28/06:CT revealed improvement in both the lung and liver.
5/23/06:Last round of Carbo/Taxol/Avastin.
6/7/06:CT revealed 2 small spots that do not appear to be cancer in the lungs, and 2 spots left on liver that are too small to be measured.
6/13/06:Started tx with just Avastin every 21 days.
6/14/06:Reduced lV Vitamin C to 2 times/week.
8/7/06:CT still shows small spots in lung, no change in size - may not be cancer. Liver clean!!!
10/10/06:CT and Bone Scan. No change on CT, Bone Scan clean. Doc says looks like remission!!!!! Yay!!!!
1/29/07:CT shows stable pulmonary nodules with new liver mets noted.
2/19/07: Started trial with Alimta and Cetuximab.
3/27/07:CT shows disease progression in lung and liver.
4/30/07: Started Taxotere every 21 days.
6/4/07: CT shows disease is stable - Yes!
7/16/07: CT shows shrinkage in all tumors - Yes, yes, yes! Will continue with Taxotere for as long as tolerated. Am still receiving IV Vitamin C once a week and am taking numerous supplements.
8/28/2007: CT is stable, possibly slight shrinkage! Will continue Taxotere.
12/10/2007: CT still stable!
2/19/2008: CT shows multiple hypodense lesions within the liver are now larger in size; lung nodules stable. Gemzar started (2 weeks on, 1 week off)
4/28/2008: CT shows slight shrinkage in 3 of 4 liver lesions. YAY!!!
7/2/2008: CT shows all lesions stable! Yesssss!!!!!!! Will continue with Gemzar.

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