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PostPosted: Tue Oct 30, 2007 10:50 am 
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With as much info and support as these boards have given me, I wanted to share the following that I got from my Dad (from Bottom Line Personal). I thought it was good and hope I'm not breaking any rules by posting it!
:lol:
What People with Cancer Want You to Know
Lori Hope

One in two men and one in three women will get cancer during their lifetimes, according to the American Cancer Society. The advent of new treatments has allowed many cancer patients to live relatively normal lives, and about nine million Americans are cancer survivors.
When someone has cancer, friends and family members want to help and give support, but sometimes they unknowingly say things that may be disturbing. There are many ways to express concern and love when someone is faced with cancer or any serious illness... and just as many ways to make someone cringe. Here's what cancer survivors wish people would do...

BE PRESENT

People may disappear or withdraw when a loved one gets sick. Some are afraid of saying or doing the wrong thing. Others are geared toward fixing problems and get frustrated when they can't help. Still others have experienced their own tragedies with cancer and don't feel strong enough to face the emotional turmoil again.
Though it's uncomfortable to confront a person's outpourings of fear and grief, make the effort. Cancer patients need to cry and release their pain. One of the greatest acts of love is to be with him/her, to listen as he shares his fears.
If you live far away, call or write. Let him know that he's loved... that he matters... and that your heart is with him.
If you simply can't be there, at least explain why the situation is too difficult for you to cope with.

GIVE HOPE

People often talk about their own experiences when they meet a person who has cancer. Their intention may be to show empathy or unload their own burdens, but the stories can hurt more than help.
Example: When people heard about my diagnosis, many said things like, "Lung cancer -- that's really bad." A waiter at an Italian restaurant even told me that his wife died of the same cancer. He shared all the gruesome details -- about the surgery, how the cancer returned and how she died. It brought back all of my own terror.
People who have cancer don't need to be reminded that they could die -- they live with that fear every day. They would rather hear stories of hope and success.
Better: When I told my cousin about my diagnosis, she related a story about one of her professors who had had the same cancer 20 years before -- and who is still alive and healthy.
When I told my best friend, with whom I have always taken an annual vacation, she said that we would still be vacationing together when we're old ladies. That's the type of encouragement people with cancer need to hear.

ASK PERMISSION

Few of us ask permission before sharing our feelings or advice, but asking permission is important when you are dealing with someone who has a life-threatening illness. That's when people are at their weakest and most vulnerable.
People say things like, "You really should try this immune-boosting herb" or "You should ask your doctor about this new treatment I read about." The word "should" suggests that the person with cancer would be remiss not to take your advice.
Instead, ask him if he is interested in your advice or information or wants to hear your stories. Back off if he says no. Possible ways to ask...
"I have been looking into this type of cancer. Would you like to hear some of the treatment options I've read about?"
"A friend told me about an herb that might help. Would you like to hear about it?"

LAUGH

We all tend to be overly serious when we're with people who have serious illnesses. That's appropriate some of the time, but not all the time. People with cancer may want to forget the pain and just laugh and be happy.
I interviewed a woman who received a cancer diagnosis on a Friday. She had all weekend to worry before she saw her doctor again on Monday, so to make herself feel better, she went to a video store and rented a bunch of comedies.
Going through cancer is not all about fear. There's always room for humor and joy.

DON'T HARP ON POSITIVE THINKING

It's normal to be angry, depressed or sad when you have cancer. No one feels positive all the time. Nevertheless, friends and family members often nag cancer patients about the importance of positive thinking and tune them out when they express worries, pessimism or fear.
The implication is that the cancer is somehow the patient's fault or that he can control the outcome. There's a myth that some people have a "cancer personality." There's no truth to it -- and it implicitly blames the patient for causing the disease.
It is important to understand that people who have cancer need to allow themselves to feel everything. They shouldn't have to hide their true emotions. It's okay to feel rotten sometimes.

SPARE THE PLATITUDES

Platitudes are reassuring words that usually are said without much thought or understanding.
Everyone with cancer has heard things like, "You never know how much time any of us has -- you could go outside tomorrow and get hit by a truck."
One woman I talked to had heard this cliché at least 10 times from people she knew -- even from her doctor. Her comment? "Okay, so then in addition to the fact that I could die from cancer, I might also get hit by a truck." That isn't comforting.
No one who has had cancer sees it as "a gift." Cancer patients don't want to hear how lucky they are or what they can learn from the experience. They just want to get better.
Silence and compassion are more helpful than empty words.


Bottom Line/Personal interviewed Lori Hope, a three-year lung cancer survivor in Oakland, California, and author of Help Me Live: 20 Things People with Cancer Want You to Know (Celestial Arts). She is managing editor of the publication Bay Area Business Woman News, has produced more than 20 documentaries and has won two Emmys. www.lorihope.com

_________________
Nicole
Mom, Lola, Dx 11/1/07 NSCLC Adenocarcinoma, Stage III & SCLC (treated as SCLC)


Mom, 60 yrs @ Dx

10/18 Dad takes Mom to ER after coughing blood all afternoon. Xray and CT Scan reveal 8 cm mass upper rt lung that is 'consistent with carcinoma'
10/26 Pulmonologist appt & bronchoscopy at Cleveland Clinic - told probably inoperable LC (due to size & location of tumor) with possible nodules on liver & adrenal gland. Pulmonologist puts in order for chemo & radiation.
11/1 Dx NSCLC Adenocarcinoma w SCLC characteristics, Stage III.
11/6 Consult w Radiation Onc & Chemo Onc - confirms inoperable but CURABLE. Need to shrink the tumor with chemo before starting radiation.
11/7 PET scan - "No evidence of metastatic disease" Praise God!
11/12-11/14 Round 1 of Chemo (cisplatin/etoposide - treating as SCLC)
11/14 Ultrasound of swollen left leg - confirmed no blood clot.
11/15 MRI - Clear! Praise God!
11/22 Thanksgiving - great celebration with the entire family. Mom is tired, has had some diarrhea, but overall handling the chemo well.
12/3-12/5 Round 2 of Chemo - hair starts falling out/Mom shaves it 12/7.
12/14 CT scan - 25% reduction in tumor! 1x/day for 4 wks and 2x/day for 1 - 1 1/2 wks radition to begin 12/26
12/26-12/28 Round 3 of chemo & radiation begins
12/26 Onc discussed PCI - to begin after chemo and rad complete
1/16-1/18 Round 4 (Final) of chemo. 2x/day rad begins 1/18. More extreme fatigue but no other side effects.
1/18-1/30 2x/day radiation

3/12 MRI & CT to determine effect of treatment. Lung tumor shrinking - no other cancer evident in abdomen CT. MRI shows nickle-sized tumor at base of brain. Brain radiation to begin on Monday.

3/17 - 3/28 Brain Radiation - targeted at tumor site along with WBR - fatigue main side effect again.

4/3 Mom's hair falls out again as a result of the WBR

5/2 CT & MRI - STABLE!!!! Lung & Brain tumors show NO LIFE and are turning to scar tissue. Mom gets the summer off - back in 3 months for scans (Aug). God is Good!

8/18 - CT & MRI - Lung Tumor STABLE. Brain tumor shows slight growth. Gamma knife surgery 8/22. Back in 2 months. Hair is starting to grow back.

8/22 - Gamma Knife for brain tumor. Out by noon and went to lunch!

10/1 - Renewed energy for Mom - not so lethargic. Back to a more normal work load around the house and has days without naps!!

10/16 - MRI - brain tumor shrunk from 13 mm to 3 mm. Positive Response! Next CT/MRI in December.

10/15 - CT scan - site of original lung tumor appears to be all SCAR TISSUE! Don't come back until APRIL. Mom and Dad going to FL for the winter after 1/1/09.

4/09 - CT & MRI are CLEAR! Scar tissue only and don't come back for SIX MONTHS! God is good all the time.

9/09 - 10/09 - Dad is dx w/ colon cancer. Successfully removed through surgery. No chemo needed. Yahoo!

10/09 - CT & MRI look GREAT! More scar tissue and see you in six months. Another winter in FL for Mom & Dad! :)

The avatar is Mom and me at her 60th bday celebration Spring, 07.


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PostPosted: Tue Oct 30, 2007 11:29 am 
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I've had some conference call/meetings with Lori Hope. She is fantastic.

_________________
- Katie Brown, Co-Founder of LCSC- Director of Support & Advocacy

18 yr cancer survivor.
Certified Patient Navigator
www.iamkatiebrown.com


In memory of Jessee Dewey, SCLC
December 29, 1938 - September 6, 2003
Lisa Dewey- Jan. 22, 2007

my parents are together in heaven
ImageImage

facebook http://www.facebook.com/lungevity


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PostPosted: Tue Oct 30, 2007 11:50 am 
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Location: Hawaii
This is great! I hadn't really thought about some of these points before, but looking back to last year when all this was new to me and lots of people were coming by the house, I now understand why I was so much more comfortable with some than with others, regardless of how long I'd known them.

I nominate this post for "sticky" status!

Aloha,

Ned

_________________
Ned is just my nickname, though it would be nice to merge it with the other meaning eventually...

Aloha means "Hello, goodbye, love, compassion, welcome, good wishes." It means belonging to others with a common humanity. It's defined better as a feeling in the heart than by words.

Dx NSCLC adenocarcinoma IIIb Sep 2006, now stage IV. Taxol+Carboplatin+Avastin 4 mo., Avastin 8 mo., Tarceva 16 mo., Alimta 12 mo. (sometimes combined with Cisplatin or Carboplatin), Navelbine since Feb 2010, 10 sessions of WBR in March 2011. See My Cancer Journey: viewtopic.php?p=351369#p351369 — UPDATED 03/05/2011.

Above left: Our golden retriever Rosie, who joined the family on 3/5/08 at the playful age of 2.

Below: Hannah, our golden companion 1994-2007.

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PostPosted: Sat Dec 08, 2007 9:24 am 
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I thought I would give this one a bump. I just finished the book and it's excellent. I would recommend it for all caregivers, friends, etc. Lori Hope is a LC survivor herself. The book is an easy read and I found the info very helpful.

_________________
Nicole
Mom, Lola, Dx 11/1/07 NSCLC Adenocarcinoma, Stage III & SCLC (treated as SCLC)


Mom, 60 yrs @ Dx

10/18 Dad takes Mom to ER after coughing blood all afternoon. Xray and CT Scan reveal 8 cm mass upper rt lung that is 'consistent with carcinoma'
10/26 Pulmonologist appt & bronchoscopy at Cleveland Clinic - told probably inoperable LC (due to size & location of tumor) with possible nodules on liver & adrenal gland. Pulmonologist puts in order for chemo & radiation.
11/1 Dx NSCLC Adenocarcinoma w SCLC characteristics, Stage III.
11/6 Consult w Radiation Onc & Chemo Onc - confirms inoperable but CURABLE. Need to shrink the tumor with chemo before starting radiation.
11/7 PET scan - "No evidence of metastatic disease" Praise God!
11/12-11/14 Round 1 of Chemo (cisplatin/etoposide - treating as SCLC)
11/14 Ultrasound of swollen left leg - confirmed no blood clot.
11/15 MRI - Clear! Praise God!
11/22 Thanksgiving - great celebration with the entire family. Mom is tired, has had some diarrhea, but overall handling the chemo well.
12/3-12/5 Round 2 of Chemo - hair starts falling out/Mom shaves it 12/7.
12/14 CT scan - 25% reduction in tumor! 1x/day for 4 wks and 2x/day for 1 - 1 1/2 wks radition to begin 12/26
12/26-12/28 Round 3 of chemo & radiation begins
12/26 Onc discussed PCI - to begin after chemo and rad complete
1/16-1/18 Round 4 (Final) of chemo. 2x/day rad begins 1/18. More extreme fatigue but no other side effects.
1/18-1/30 2x/day radiation

3/12 MRI & CT to determine effect of treatment. Lung tumor shrinking - no other cancer evident in abdomen CT. MRI shows nickle-sized tumor at base of brain. Brain radiation to begin on Monday.

3/17 - 3/28 Brain Radiation - targeted at tumor site along with WBR - fatigue main side effect again.

4/3 Mom's hair falls out again as a result of the WBR

5/2 CT & MRI - STABLE!!!! Lung & Brain tumors show NO LIFE and are turning to scar tissue. Mom gets the summer off - back in 3 months for scans (Aug). God is Good!

8/18 - CT & MRI - Lung Tumor STABLE. Brain tumor shows slight growth. Gamma knife surgery 8/22. Back in 2 months. Hair is starting to grow back.

8/22 - Gamma Knife for brain tumor. Out by noon and went to lunch!

10/1 - Renewed energy for Mom - not so lethargic. Back to a more normal work load around the house and has days without naps!!

10/16 - MRI - brain tumor shrunk from 13 mm to 3 mm. Positive Response! Next CT/MRI in December.

10/15 - CT scan - site of original lung tumor appears to be all SCAR TISSUE! Don't come back until APRIL. Mom and Dad going to FL for the winter after 1/1/09.

4/09 - CT & MRI are CLEAR! Scar tissue only and don't come back for SIX MONTHS! God is good all the time.

9/09 - 10/09 - Dad is dx w/ colon cancer. Successfully removed through surgery. No chemo needed. Yahoo!

10/09 - CT & MRI look GREAT! More scar tissue and see you in six months. Another winter in FL for Mom & Dad! :)

The avatar is Mom and me at her 60th bday celebration Spring, 07.


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PostPosted: Sat Dec 08, 2007 2:45 pm 
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Location: Minnesota
I made it a STICKY so it will stay at the top of the page.

_________________
Warm and Gentle Hugs,
Connie B
Date Dx.d, 7/21/1995, Age 43, Adenocarcinoma, Stage IIIB, had 3.4cm tumor and three cancerous lymph nodes.
7/25/1995 had Left Lung Removed along with several lymph nodes.
9/9/95 Started Chemo (VP-16/Cisplatin), & Radiation (36 treatments). Cancer Free.
8/11/2003 CT Scan found 4mm Nodule Right Upper Lung. Did PET scan & Nodule Lite up. Also found a Tumor in my Left Atrium (Heart)
8/21/03 Open Heart Sugery for Myxoma Tumor in Left Atrium. During heart surgery (3) surgeons checked 4mm nodule & agreed it did not appear to be cancerous.
11/2004-CT & PET scan, nodule still there 6mm will watch.
4/2005-CT, Nodule still there and has grown to 8mm will do another CT in 9/2005. Waiting & watching nodule.
9/2005 CT Nodule has shrunk to 5mm. Doctor's feel nodule could be scar tissue.
2/2006 Having Shortness of Breath problems.
4/2006 CT, nodule 5mm No Change.
11/2006 CT scan no change in Nodule.
4/26/07 Results of CT scan shows I have another Noudule. Now have two nodules, one is 6-7mm & the new one is about 3mm.
9/2007 CT shows 3 nodules all mm in size. First 2 have no change in them. New one is very small. Repeat CT in 6 months.
12/11/07 Still NED
5/7/08 CT (right lung) (nodules watch) two new nodules I now have 5 nodules. Will watch via CT scans.
10/08 CT Scan showed 1 nodule 6mm has grown to 1.2cm.
5/22/09 CT Scan (awaiting results)
7/4/09 PET Scan (3 nodules in left lung are now 1.4c.m in sizes.
8/13/09 Did Bronhcoscopy
8/18/09 NOT Cancer, no cancer found.
Next PET Scan Oct 2009.

READ MY STORY @ http://www.lungevity.org/l_community/vi ... hp?t=13224

Lost my Father age 56(1970), Mother age 66 (1987), and Sister age 43 (1988) all to Lung Cancer
AVATAR is in Iowa @ the Presidential Cancer Forum


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PostPosted: Sat Dec 08, 2007 4:53 pm 
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Joined: Sun Oct 21, 2007 9:12 pm
Posts: 137
Location: Ohio
Thank you, Connie!

_________________
Nicole
Mom, Lola, Dx 11/1/07 NSCLC Adenocarcinoma, Stage III & SCLC (treated as SCLC)


Mom, 60 yrs @ Dx

10/18 Dad takes Mom to ER after coughing blood all afternoon. Xray and CT Scan reveal 8 cm mass upper rt lung that is 'consistent with carcinoma'
10/26 Pulmonologist appt & bronchoscopy at Cleveland Clinic - told probably inoperable LC (due to size & location of tumor) with possible nodules on liver & adrenal gland. Pulmonologist puts in order for chemo & radiation.
11/1 Dx NSCLC Adenocarcinoma w SCLC characteristics, Stage III.
11/6 Consult w Radiation Onc & Chemo Onc - confirms inoperable but CURABLE. Need to shrink the tumor with chemo before starting radiation.
11/7 PET scan - "No evidence of metastatic disease" Praise God!
11/12-11/14 Round 1 of Chemo (cisplatin/etoposide - treating as SCLC)
11/14 Ultrasound of swollen left leg - confirmed no blood clot.
11/15 MRI - Clear! Praise God!
11/22 Thanksgiving - great celebration with the entire family. Mom is tired, has had some diarrhea, but overall handling the chemo well.
12/3-12/5 Round 2 of Chemo - hair starts falling out/Mom shaves it 12/7.
12/14 CT scan - 25% reduction in tumor! 1x/day for 4 wks and 2x/day for 1 - 1 1/2 wks radition to begin 12/26
12/26-12/28 Round 3 of chemo & radiation begins
12/26 Onc discussed PCI - to begin after chemo and rad complete
1/16-1/18 Round 4 (Final) of chemo. 2x/day rad begins 1/18. More extreme fatigue but no other side effects.
1/18-1/30 2x/day radiation

3/12 MRI & CT to determine effect of treatment. Lung tumor shrinking - no other cancer evident in abdomen CT. MRI shows nickle-sized tumor at base of brain. Brain radiation to begin on Monday.

3/17 - 3/28 Brain Radiation - targeted at tumor site along with WBR - fatigue main side effect again.

4/3 Mom's hair falls out again as a result of the WBR

5/2 CT & MRI - STABLE!!!! Lung & Brain tumors show NO LIFE and are turning to scar tissue. Mom gets the summer off - back in 3 months for scans (Aug). God is Good!

8/18 - CT & MRI - Lung Tumor STABLE. Brain tumor shows slight growth. Gamma knife surgery 8/22. Back in 2 months. Hair is starting to grow back.

8/22 - Gamma Knife for brain tumor. Out by noon and went to lunch!

10/1 - Renewed energy for Mom - not so lethargic. Back to a more normal work load around the house and has days without naps!!

10/16 - MRI - brain tumor shrunk from 13 mm to 3 mm. Positive Response! Next CT/MRI in December.

10/15 - CT scan - site of original lung tumor appears to be all SCAR TISSUE! Don't come back until APRIL. Mom and Dad going to FL for the winter after 1/1/09.

4/09 - CT & MRI are CLEAR! Scar tissue only and don't come back for SIX MONTHS! God is good all the time.

9/09 - 10/09 - Dad is dx w/ colon cancer. Successfully removed through surgery. No chemo needed. Yahoo!

10/09 - CT & MRI look GREAT! More scar tissue and see you in six months. Another winter in FL for Mom & Dad! :)

The avatar is Mom and me at her 60th bday celebration Spring, 07.


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PostPosted: Sat Dec 08, 2007 8:33 pm 
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A great post. Glad you touched on the 'tyranny of positive thinking' Some people expect the cancer patient to be upbeat and positive continually. Its just not possible.

wendyr

_________________
Picture is of Maurice with one of his recent metal sculptures.

If you want to make God laugh, tell Him your plans.

wife and caregiver to husband Maurice, age 69 at dx, heavy smoker, quit at dx.
Previous colon cancer 1992.
Previous melanoma 11/2001
4/13/06 cough, pcp ordered chest xray which showed abnormalities to right lung with right hilar and suprahilar mass.
4/25/06 CT shows stellate mass in right pulmary apex 2.8cm x 1.1cm. Also right suprahilar adenopathy at 3cm as well as right paratracheal, precarinal and subcarinal lymphadenopathy. Small nodular densities at the posterior lung bases in th 2-2mm size.
5/3/06 Bronchoscopy. Dx nsclc with adenopathy adenocarcinoma
5/4/06 Pet Scan reveals prominent areas consistent with known tumor and multiple satellite lesions. Largest tumor in subcarinal area but also in the mediastinum and right hilar area and satellite ltumors in the right lung apex. It's stage 3a nsclc
5/5/06 see local onc (Dr Gloom & Doom) no hope. Possible chemo but no cure, palliative only. Thanks but no thanks. Had already made appt with MD Anderson Cancer Center in Orlando for 2nd opinion
5/15/06 2nd opinion at MD Anderson. Superior level of professionalism. They swung into action. Start induction chemo of weekly carboplatin/paclitaxol immediately and referred to radiation for Tomo Therapy IMRT.
5/25/06 chemo starts
6/5/06 radiation starts. 33 appointments made for IMRT. We drive 180 miles round trip daily for 33 days.
7/20/06 Radiation ends. Onc says next plan is to go to heavier dose chemo - same drugs - but every 3 weeks, 3 cycles.
8/06 thru 9/06 chemo, carboplatin/paclitaxol. WBC went down, got Neulasta. RBC went down got Aranesp.
9/6/06 CT shows some reduction in satellite tumors and in lymph nodes but main mass has increased. Keep going with chemo.
10/13/06 Onc says we get 2mths off. Chemo & Radiation still working.
12/14/06 Pet/CT shows overall reduction of 60% we're happy, she's not satisfied. Gives us 3 choices. 1: Leave it alone and he might live another year. 2: Go on Tarceva (expensive) 3: Go in clinical trial with Tarceva and Avastin. We tell her we are pro-active and choose trial.
12/20/06 CT Brain. no mets to brain
12/21/06 See onc sign papers for trial.
12/28/06 given bottle of Tarceva & first infusion of Avastin.
1/18/07 second infusion of Avastin. See onc. Diarrhea from Tarceva is being handled with Lomotil 2.5mg which he has used since colon cancer. Joint and body pain from Avastin being handled with Vicodin 750mg. 2 tabs every 4 hours. Doesn't kill the pain but takes the edge off it.
2/5/07 CT scan. Pickd up rx for oxycontin and loratab for pain. Doesn't help much
2/7/07 Bone scan
2/8/07 See onc. ct shows everything stable but may be issue with left hip as seen on bone scan. Will follow up with MRI. Pain management switched to oxycontin & ultram. So far, so good.
2/15/07 MRI of hip & femur. No mets seen.
2/25/07 oxycontin & ultram not working. Pain getting worse
2/24/07 Bought curcumin at health food store - used for inflammation
3/1/07 Pain meds upped to 20mg oxycontin twice daily & ultram for breakthrough pain.
03/16 - 3/19/07 increased diarrhea Added pro biotic, the refrigerated kind, started to stabilize bowels after about one week. Also started on the BRAT diet. Bananas, Rice, Applesauce, Toast.
3/19/07 CT scan
3/22/07 Results show stable. Continue on with same program until end of July
3/22/07 combination of pro biotic and increased rice and banana intake have stabilized bowels. Diarrhea no longer a serious issue
3/27/07 oxycontin upped to 20mg every 8 hours, plus 2 oxycodone 5mg every 3 hours for breakthrough pain
4/30 CT scan
5/4 Scan shows stable. Continue in trial until July
5/24 Stable
6/14 Stable
7/5 Stable
7/24 Stable
7/24 Started Lexapro 20mg for depression
7/26 Cortisone shots in each shoulder. Enormous pain relief. Can now go back to 20mg oxycontin every 12 hours with hardly any breakthrough pain.
9/06 Stable
9/06 Added Wellbutrin XL 150 mg to the Lexapro for depression
10/18 CT. Stable
10/19 Onc called. RBC way too high at 18.3. We drive back to Orlando and they take 1 pt blood to bring count down. Rather fitting since Halloween is coming up. Maurice does not see the humor in it.
10/24 Lexapro dropped, Wellbutrin increased to 200mg twice daily
11/14 hemaglobin still way high at 17.4 we're to go back & give up another pint of blood. Onc wants to do this every month for the next 3 months
11/29 CT: minor progression (10%) but onc says it still falls within 'stable' No new plan just stay with trial and rescan in 6 weeks
11/29 Blurred vision and dizzy. Brain MRI scheduled for 12/6
12/10 MRI clear....thank you God
12/10 phlebotomy 500cc
12/20 Chemo today. Blood work shows hemoglobin down to 16.7. Phlebotomy is working. Next scan 1/8
1/7/08 phlebotomy
1/8 ct, stable, but find blood clot in right lung. Admitted to MD Anderson for treatment.
1/11 discharged from hospital. Blood INR is .8 they want it to get up to between 2 & 3. He gets Lovenox 80mg twice daily injected in stomach and 2.5 mg Coumadin at night. Has to go to lab every 3 days for four weeks for blood test.
1/10 taken out of trial no more Avastin. Continue with Tarceva only.
1/14 Blood INR .9 should be between 2 & 3
l/31 PT/INR will not come up past 1.3 in spite of 10mg coumadin daily
2/21 CT 30% progression in 6 weeks since Avastin discontinued due to clot but now that clot is gone Onc says to go back on Avastin along with Tarceva. Will re-scan after 2 cycles. If no improvement we move on to Alimta
2/28 back on Avastin & Tarceva but no longer in trial & Tarceva is $100 a day but we have hope that it will work it's magic as it did before when he was in the trial.
4/1 Scan shows stable. Avastin & Tarceva doing the job.


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PostPosted: Mon Dec 31, 2007 12:25 am 
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Location: AR
I'm putting this in my "Notes" to read every week!

_________________
July 07 - Unable to get needle Bx of 1.2 cm mass rt. upper lung or Bx of mediatianal mass 1.3cm, so a right upper lobe removal was done on my husband SCLC.

Chemo X5 treatments started 3 weeks after surgery Carbo & Etopiside. Concurrent radiation to the chest also done

Nov 07 had PCI

Sailed throught the surgery, radiation, and chemo.

Post PCI is when he started the fatigue and short term memory loss. It's been 4 weeks since PCI and severe fatigue continues with 2 long naps per day and nodding off for the rest of the day.

Jn 1, 2008 Today is 5 weeks from radiation. He continues with fatigue and now is starting to lose weight. He was always able to maintain, but now losing.


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PostPosted: Tue Jan 22, 2008 10:17 am 
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Joined: Mon Oct 08, 2007 8:43 am
Posts: 3028
Location: Parma Hts, Ohio
Nicole -

Don't know how I missed this one!!

Thank you so much - its a wonderful post and Ihave printed it out and put it on my fridge for my family and friends to read.

Its all so true - I particulary get angry when people tell me that I have already passed my doc's original timeline and I should "be grateful" that I have been around this long. I am grateful, some people are taken by this horrid disease so much earlier than me but yet its hard to look at anything with this disease as being grateful - its also hard to know that the clock ticks every day.

So thank you so much - Lori Hope sure hit the nail on the head!!

Hugs - Patti B.

_________________
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


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