Post by Deanne Jenkyns on Apr 26, 2007 13:36:55 GMT 1
Members currently on Tarceva, fighting for tarceva, about to start tarceva, been recommended Tarceva but cannot raise the funds to get it.
Please post your details below and I will add and update.
Dave ( 3 months on tarceva, scan showed secondaries in liver shrunk and disappeared, tumour in lung shrank) Side affects Rash, under control lower dose (100mg) Doing great on Tarceva. ;D Dave's company medical insurance is currently funding
Jimmy Patient @ South Tyneside District Hospital( Just recently started Tarceva, and doing great! ;Dafter 4 days pain free, breathing normal, been back to work) (Side affects rash, now under control with lower dose (100mg) Having to self fund, fighting south Tyneside PCT. Cost per Month £1740.40 21/06/07 Jimmy doing , pain free, no pain killers at all, CT scan coming up. July 5th 2007 CT Scan Results Following Tarceva
1. Primary Tumour Shrunk from 28 to 19mm
2.Reduction in the number and size of pulmonary metastases.
3. Consolidation to the tumour is less marked.
4. No significant Mediastinal Lymphadenopathy
5. No hepatic, adrenal or visualised Skeltal metastases
Conclusion: Good response to Tarceva with reduction in size to primary tumour and pulmonary metastases.
*Please Note that Jimmy had to have 12 days off the Tarceva 150mg due to severe rash and he reduced the dose. He is now taking 100mg but at one point was only on 75mg. Their is strong evidence to suggest that patients with Rash do better on Tarceva. The more severe the rash the better the patient does. It should be noted however that some patients can do well without bad rash. But an over all percentage of patients with Rash do tend to do better. Jimmy's oncologist told him to stop taking it becasue of the Rash and then went on to say he had no experience of Tarceva. Jimmy refused to come off it thank goodness we did our own research! I would hate to think where we would be now had we not!
Sharon Part of a trial (doing great on Tarceva, for two years, 41 yr old female diagnosed Aug 04 adenocarcinoma stage 4 and unable to have radiotherapy. chemo kept it stable and then progressed after 3 months. Started Tarceva April 05 and there has been significant shrinkage in primary tumour in right lung and numerous nodules in left lung. lesions on vertebra and on liver have also shrunk. ;D
Scan 9th Aug 05 shows all is stable and only primary tumour 1.4cm x 1.5cm remains in lungs. All other nodules are gone!! Lesion on spine still 6mm. Side affects Rash, rash under control.
Dawns Dad ( Just recently started Tarceva, Dad doing much better ;D side affects Rash. Managing rash ok. having to self fund. 21/06/07 Doing well cancer stable ;D
Robert patient @south tyneside district hospital, Starting Tarceva 30/4/07 having to self fund, fighting South Tynside PCT
Doug Offered Tarceva by oncologist but will have to pay. If he smoked he would have qualified for Tarceva Trial! Outrageous! Decided to self fund and will be starting in two weeks.
Martyn diagnosed with nsclc august 06 told him inoperable and incurable, started chemo september finished december excellent scan results, tumors shrunk down. Started Tarceva two months ago, rash became too much, he became toxic and had to have a weeks break. Back on dose of 100mg (Reduced from 150)
Harry White Been told about Tarceva by oncologist but would have to self fund! Trying to raise some money to self fund.
Harry started Tarceva after receiving a 3 month donation ;D
Kent Has asked for Tarceva, Oncologist refused.
Pat Hartley Patient @ South Tyneside District Hospital, Started Tarceva 25th May 07, Having to self fund, Cost £1909.53
*Note the difference in cost between Jimmy and Pat, even though they have the same oncologist and same hospital!
emoore's Mam Oncologist has writen to Darlington PCT to request Tarceva. Self funding the 1st month. Goodluck!
Please add your names and details for this list,
Deanne
x
Please post your details below and I will add and update.
Dave ( 3 months on tarceva, scan showed secondaries in liver shrunk and disappeared, tumour in lung shrank) Side affects Rash, under control lower dose (100mg) Doing great on Tarceva. ;D Dave's company medical insurance is currently funding
Jimmy Patient @ South Tyneside District Hospital( Just recently started Tarceva, and doing great! ;Dafter 4 days pain free, breathing normal, been back to work) (Side affects rash, now under control with lower dose (100mg) Having to self fund, fighting south Tyneside PCT. Cost per Month £1740.40 21/06/07 Jimmy doing , pain free, no pain killers at all, CT scan coming up. July 5th 2007 CT Scan Results Following Tarceva
1. Primary Tumour Shrunk from 28 to 19mm
2.Reduction in the number and size of pulmonary metastases.
3. Consolidation to the tumour is less marked.
4. No significant Mediastinal Lymphadenopathy
5. No hepatic, adrenal or visualised Skeltal metastases
Conclusion: Good response to Tarceva with reduction in size to primary tumour and pulmonary metastases.
*Please Note that Jimmy had to have 12 days off the Tarceva 150mg due to severe rash and he reduced the dose. He is now taking 100mg but at one point was only on 75mg. Their is strong evidence to suggest that patients with Rash do better on Tarceva. The more severe the rash the better the patient does. It should be noted however that some patients can do well without bad rash. But an over all percentage of patients with Rash do tend to do better. Jimmy's oncologist told him to stop taking it becasue of the Rash and then went on to say he had no experience of Tarceva. Jimmy refused to come off it thank goodness we did our own research! I would hate to think where we would be now had we not!
Sharon Part of a trial (doing great on Tarceva, for two years, 41 yr old female diagnosed Aug 04 adenocarcinoma stage 4 and unable to have radiotherapy. chemo kept it stable and then progressed after 3 months. Started Tarceva April 05 and there has been significant shrinkage in primary tumour in right lung and numerous nodules in left lung. lesions on vertebra and on liver have also shrunk. ;D
Scan 9th Aug 05 shows all is stable and only primary tumour 1.4cm x 1.5cm remains in lungs. All other nodules are gone!! Lesion on spine still 6mm. Side affects Rash, rash under control.
Dawns Dad ( Just recently started Tarceva, Dad doing much better ;D side affects Rash. Managing rash ok. having to self fund. 21/06/07 Doing well cancer stable ;D
Robert patient @south tyneside district hospital, Starting Tarceva 30/4/07 having to self fund, fighting South Tynside PCT
Doug Offered Tarceva by oncologist but will have to pay. If he smoked he would have qualified for Tarceva Trial! Outrageous! Decided to self fund and will be starting in two weeks.
Martyn diagnosed with nsclc august 06 told him inoperable and incurable, started chemo september finished december excellent scan results, tumors shrunk down. Started Tarceva two months ago, rash became too much, he became toxic and had to have a weeks break. Back on dose of 100mg (Reduced from 150)
Harry White Been told about Tarceva by oncologist but would have to self fund! Trying to raise some money to self fund.
Harry started Tarceva after receiving a 3 month donation ;D
Kent Has asked for Tarceva, Oncologist refused.
Pat Hartley Patient @ South Tyneside District Hospital, Started Tarceva 25th May 07, Having to self fund, Cost £1909.53
*Note the difference in cost between Jimmy and Pat, even though they have the same oncologist and same hospital!
emoore's Mam Oncologist has writen to Darlington PCT to request Tarceva. Self funding the 1st month. Goodluck!
Please add your names and details for this list,
Deanne
x
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