My husband's pet shows possible cancer still there following his most recent chemo of 4 months. So doctor is switching him to Topotican - does anyone have any experience with this?

_________________
MJB
Husband, 52, diagnosed 1/23/04 SCLC extensive, left lung and left adrenal gland
1/29 Chemo (Cisplat, Camptosaur, Mannitol?). After 4 rounds, Xray clear
3/11 CT shows cells in lung, adrenal tumor decreased by 90%, start 4 more chemos
4/26 CT shows one spot
4/29 Radiation doctor says PCI not recommended in extensive stage
4/30 PET shows minimal residual hypermetabolism probably reflecting treated disease.
5/01 Oncologist getting opinions from 2 other doctors.
5/10 Start Lung radiation 5/13, followed by PCI
6/21 MRI before starting PCI shows 6 mets to brain so we do 15 days whole brain radiation as finishing chest radiation.
8/12 Oncologist upbeat. MRI and Petscan scheduled for Oct.
10/4 Petscan 10/5 MRI
10/8/04 Some brain mets gone, some shrunk. Largest is larger and shows swelling, spot on adrenal
10/14 3 oncologists have compared scans and aren't convinced the tumor in the brain is growing - think the edema may be cancer cells dying. Wait 2 months, then new MRI. Radiation therapy to left adrenal gland next week.
12/8/04 MRI of brain. 5 tumors gone, one larger. Stereotactic radiosurgery scheduled
12/15 Radiosurgery to the brain tumors.
2/2 Pet/CT - clear.
3/7 Seizure, taken to ER. Recovered quickly, put on dilantin again.
3/8 MRI shows tumor has shrunk and swelling gone away.
Month of April - short dizzy spells, left arm going numb. Drs. think it's a side effect. Moved MRI up to 5/11/05. Swelling in brain returned. Tumor may be growing. Brain surgery 5/27/05 - Removed tumor and a mass of scar tissue. Some evidence of necrosis.
8/05 - CT's clear. MRI shows scar tissue but no tumor.
10/24/05 Back on steroids - spells, loss of balance, growing weakness. MRI on 10/31/05, inconclusive. Now on maximum dosage of steroids, MRI scheduled for Dec.
12/28 MRI - Brain tumor growing again. Probably need to operate again but carries the risk of loss of function to left side. Will hold off unless symptoms worsen.
1/06 - Severe loss of balance problems after sitting or riding, dozes while reading and doing puzzles. Met with neurosurgeon 1/26. and scheduled brain surgery for 2/2/06.
2/2/06 Surgery went well. Dr. expected possible paralysis of left side, but there was only mild loss of use of left hand. Got 99% of the cancer, can still see a couple of spots. MRI scheduled 4/15/06. Meantime, sister has been diagnosed with liver and bone cancer that mestastisized from breast cancer in 1999.
PET in March, MRI in April. Pet is clear, MRI looks good.
5/8/06 Oncologist is talking possible remission! Yey! Continuing MRI's and other tests.
10/29/06 Lost sister to breast cancer.
MRI - 1/07, 4/07, 7/07 - minimal growth of small tumor.
PET - 2/07 & 8/07 with CT in between. Nothing showing up.
MRI's every 3-4 months, a CT in the summer. As of 10/08, MRI's have been moved out to six months and Oncologist says in remission!
2009 - All tests NED! Our oncologist is retiring.
3/10/10 CT shows enlarged lymph nodes and increase in previously stable spot on lung.
3/19/10 PET confirms enlarged nodes and slightly increased spot on lung.
4/1/10 Guided needle biopsy of lymph nodes in groin area. Can't get a biopsy of the lung due to location. Good news/bad news. It's not SCLC returned. It is Lymphoma, non Hodgkins. Bone marrow biopsy on 4/7 was negative. Chemo started on 4/15 for 3 months.
8/10 - PET shows lymph nodes still enlarged, one place in lung still "lit up" and not decreasing. Doc concerned that it may be lung cancer -said chemo used on the lymphoma should have made it smaller if it was SCLC.
8/10 Met with lung surgeon who has had a thoracotomy (sp?) himself in the past. Explained procedure, if biopsy positive, then a resection or removal of top portion of left lung.
9/7/10 - Surgery. Had to cut through asbestos in lung and lymph nodes and took longer than expected. Removed a tumor. SCLC again, so he did a resection and took about 2/3 of the upper lung. 6 days in ICU, recovery started out well, but he went into AFIB with heart rate going up to 150-160. Home 9/16 with oxygen and walker. Start chemo for SCLC again on 9/30 if ok. The positive-no sign of lymphoma (took lymph nodes from groin) and no cancer cells in apx. 12 nodes they took.
9/25 -Fluid spurting out through holes in chest. Returned to hospital with infection in the chest area. Went into AFIB and was moved to ICU. Antibiotics started for infection and new chest tubes and suction inserted. Shocked heart back into a normal rhythm.
10/1 - Sent home with chest tubes and suction cups, and nurses showed me how to do an IV. Has lost 16 lbs. since first trip to hospital. Tubes/suction cups removed 10/23. On antibiotics until 11/6.
11/8 CT shows infection gone, a space still in chest cavity but doctor thinks it's better not to go back in, break ribs and collapse the lung. We agree!
11/11/10 - Started the same chemo as 7 years ago but substituting a different drug for Cisplatin.
3/14/11 PET Scan done 3/2. One spot seems suspicious so they are going to switch chemo regimens as this one hasn't made it go away. Started Topotecan on 3/18.
6/7/11 PET Scan. Cancer is growing. We start a third round of chemo after he has a couple of weeks to recover.
6/24 Starting new chemo with Taxol.
7/25/11 Out of taxol, switching to taxotere.
8/31/11 Developed allergic rash, taxol now available so we switched back.
9/14/11 Last chemo 9/15 Developed severe pain, vicodin not working. Doctor prescribed morphine sulfate.
Pet Scan 9/21/11. Appt. to get results 9/28.
9/24 Scott fell when trying to step on the porch. Legs hardly working, reflexes are slow.
9/26 Called Dr. and asked for PET results and whether we should call hospice. (I took his keys yesterday.) She said cancer had progressed and we could call hospice to have them evaluate so I did.
Cancer has gone to his liver, pancreas, colon, chest and ribs.
10/04/11 Scott passed away with the family at his side. I hope he has found Peace in the Valley.

My dad had 4 successful months on topotecan. Aside from some fatigue he did not have any side effects. He didn't lose hair either, in fact it was growing back. With the first two chemo cocktails he had every side effect known to man and had such a hard time...Topo was an easy one for him.

I hope it works wonders for your husband.

Keep posting and keep us posted.
Hugs,
k

Scott never loses his hair during chemo! Maybe because he was already partially bald:) And he's already fatigued from all he's been through and the heart medication they put him on, so that won't be anything new. I just had not heard of it and hadn't had time to do any research. Thanks for the input.

_________________
MJB
Husband, 52, diagnosed 1/23/04 SCLC extensive, left lung and left adrenal gland
1/29 Chemo (Cisplat, Camptosaur, Mannitol?). After 4 rounds, Xray clear
3/11 CT shows cells in lung, adrenal tumor decreased by 90%, start 4 more chemos
4/26 CT shows one spot
4/29 Radiation doctor says PCI not recommended in extensive stage
4/30 PET shows minimal residual hypermetabolism probably reflecting treated disease.
5/01 Oncologist getting opinions from 2 other doctors.
5/10 Start Lung radiation 5/13, followed by PCI
6/21 MRI before starting PCI shows 6 mets to brain so we do 15 days whole brain radiation as finishing chest radiation.
8/12 Oncologist upbeat. MRI and Petscan scheduled for Oct.
10/4 Petscan 10/5 MRI
10/8/04 Some brain mets gone, some shrunk. Largest is larger and shows swelling, spot on adrenal
10/14 3 oncologists have compared scans and aren't convinced the tumor in the brain is growing - think the edema may be cancer cells dying. Wait 2 months, then new MRI. Radiation therapy to left adrenal gland next week.
12/8/04 MRI of brain. 5 tumors gone, one larger. Stereotactic radiosurgery scheduled
12/15 Radiosurgery to the brain tumors.
2/2 Pet/CT - clear.
3/7 Seizure, taken to ER. Recovered quickly, put on dilantin again.
3/8 MRI shows tumor has shrunk and swelling gone away.
Month of April - short dizzy spells, left arm going numb. Drs. think it's a side effect. Moved MRI up to 5/11/05. Swelling in brain returned. Tumor may be growing. Brain surgery 5/27/05 - Removed tumor and a mass of scar tissue. Some evidence of necrosis.
8/05 - CT's clear. MRI shows scar tissue but no tumor.
10/24/05 Back on steroids - spells, loss of balance, growing weakness. MRI on 10/31/05, inconclusive. Now on maximum dosage of steroids, MRI scheduled for Dec.
12/28 MRI - Brain tumor growing again. Probably need to operate again but carries the risk of loss of function to left side. Will hold off unless symptoms worsen.
1/06 - Severe loss of balance problems after sitting or riding, dozes while reading and doing puzzles. Met with neurosurgeon 1/26. and scheduled brain surgery for 2/2/06.
2/2/06 Surgery went well. Dr. expected possible paralysis of left side, but there was only mild loss of use of left hand. Got 99% of the cancer, can still see a couple of spots. MRI scheduled 4/15/06. Meantime, sister has been diagnosed with liver and bone cancer that mestastisized from breast cancer in 1999.
PET in March, MRI in April. Pet is clear, MRI looks good.
5/8/06 Oncologist is talking possible remission! Yey! Continuing MRI's and other tests.
10/29/06 Lost sister to breast cancer.
MRI - 1/07, 4/07, 7/07 - minimal growth of small tumor.
PET - 2/07 & 8/07 with CT in between. Nothing showing up.
MRI's every 3-4 months, a CT in the summer. As of 10/08, MRI's have been moved out to six months and Oncologist says in remission!
2009 - All tests NED! Our oncologist is retiring.
3/10/10 CT shows enlarged lymph nodes and increase in previously stable spot on lung.
3/19/10 PET confirms enlarged nodes and slightly increased spot on lung.
4/1/10 Guided needle biopsy of lymph nodes in groin area. Can't get a biopsy of the lung due to location. Good news/bad news. It's not SCLC returned. It is Lymphoma, non Hodgkins. Bone marrow biopsy on 4/7 was negative. Chemo started on 4/15 for 3 months.
8/10 - PET shows lymph nodes still enlarged, one place in lung still "lit up" and not decreasing. Doc concerned that it may be lung cancer -said chemo used on the lymphoma should have made it smaller if it was SCLC.
8/10 Met with lung surgeon who has had a thoracotomy (sp?) himself in the past. Explained procedure, if biopsy positive, then a resection or removal of top portion of left lung.
9/7/10 - Surgery. Had to cut through asbestos in lung and lymph nodes and took longer than expected. Removed a tumor. SCLC again, so he did a resection and took about 2/3 of the upper lung. 6 days in ICU, recovery started out well, but he went into AFIB with heart rate going up to 150-160. Home 9/16 with oxygen and walker. Start chemo for SCLC again on 9/30 if ok. The positive-no sign of lymphoma (took lymph nodes from groin) and no cancer cells in apx. 12 nodes they took.
9/25 -Fluid spurting out through holes in chest. Returned to hospital with infection in the chest area. Went into AFIB and was moved to ICU. Antibiotics started for infection and new chest tubes and suction inserted. Shocked heart back into a normal rhythm.
10/1 - Sent home with chest tubes and suction cups, and nurses showed me how to do an IV. Has lost 16 lbs. since first trip to hospital. Tubes/suction cups removed 10/23. On antibiotics until 11/6.
11/8 CT shows infection gone, a space still in chest cavity but doctor thinks it's better not to go back in, break ribs and collapse the lung. We agree!
11/11/10 - Started the same chemo as 7 years ago but substituting a different drug for Cisplatin.
3/14/11 PET Scan done 3/2. One spot seems suspicious so they are going to switch chemo regimens as this one hasn't made it go away. Started Topotecan on 3/18.
6/7/11 PET Scan. Cancer is growing. We start a third round of chemo after he has a couple of weeks to recover.
6/24 Starting new chemo with Taxol.
7/25/11 Out of taxol, switching to taxotere.
8/31/11 Developed allergic rash, taxol now available so we switched back.
9/14/11 Last chemo 9/15 Developed severe pain, vicodin not working. Doctor prescribed morphine sulfate.
Pet Scan 9/21/11. Appt. to get results 9/28.
9/24 Scott fell when trying to step on the porch. Legs hardly working, reflexes are slow.
9/26 Called Dr. and asked for PET results and whether we should call hospice. (I took his keys yesterday.) She said cancer had progressed and we could call hospice to have them evaluate so I did.
Cancer has gone to his liver, pancreas, colon, chest and ribs.
10/04/11 Scott passed away with the family at his side. I hope he has found Peace in the Valley.

We also have an ASK the EXPERT on here too, poweres by the lung cancer experts at GRACE
Just click on www.lungevity.org/ASK

You can search for Q & As aboutTopotecan or even submit your own question to the Drs.

(((hugs)))

Keep us posted!