Assessment day today and it was not the news we were hoping for, although it was the news we have been expecting for some time now.
Steve's August CT scan confirmed some disease progression since his last scan in December 2009, at the end of the Velcade drug trial. The good news is that the mesothelioma is still confined just to the right lung and there is no sign of metastasis elsewhere. However, the pleural thickening in the affected lung has increased in depth and is more widespread, and the meso has now started to grow into the chest wall, on his right side. The doctor was surprised he hasn't had any pain as a result of the chest wall meso, but thinks this might be due to the very slow, gradual rate of growth of the cancer.
There was some discussion about the pros and cons of having chemotherapy, with the all attendant side effects and inherent risks, while Steve is still feeling good and able to enjoy a good quality of life. However, whilst he is pain-free at present, that's likely to change if the cancer continues to grow, especially into the chest wall. I think that factor was the determining factor in reaching a decision that the time has come to attack the cancer again.
So we are off on the chemotherapy merry-go-round in about three weeks time; a combination of pemetrexed (Alimta) and carboplatin (rather than cisplatin, at our request). This will be given as a hospital day patient once every three weeks, along with steroids, vitamin B12 injections and folic acid tablets (by the GP practice nurse) to counteract the side effects of the pemetrexed. Hopefully, another six cycles of chemo will stop the mesothelioma in its tracks or, even better, whack Leo back a bit so that Steve can continue to enjoy life without symptoms for even longer.
Steve will get his first dose of vitamin B12 and associated meds next Monday afternoon, so that they will be in his system for a couple of weeks before chemo starts. Our flu jabs have been booked in for 29 September, to reduce the risk of catching something nasty while his immune system is compromised by the chemo. Just waiting for the appointment for the first cycle now and then we can start pencilling in future sessions on the calendar to work round over the next five months or so, assuming he has the full six cycles of treatment.
When Steve was on the Velcade drug trial in 2009, we had to go to the hospital twice a week for two weeks for chemo, then every other third week for a scan. It felt like we lived there! At least this time round, Steve will have two clear weeks between sessions to relax, recover and hopefully enjoy a bit of "normal" life. Plus the side effects of carboplatin are known to be generally less severe than those associated with cisplatin.
Even so, we know it won't be easy, but at least we have a better idea of what to expect this time around and how to manage the side effects and other limitations of chemotherapy. And if the chemo does its job, we will have something extra special to celebrate in 2013 (and an excuse to enjoy a second Christmas/New Year when the side effects of the drugs have worn off :-)
Although we have been dreading this news, now that it has happened we have switched into action mode and somehow feel calm and focussed on the fight ahead. The energy we have been putting into galavanting around europe and the UK over the last couple of recent years will now be directed into fighting back. We will be following in the footsteps of other meso warriors and their partners and we know that they will be there for us when we need them, along with our family and friends, who have given us such great support since June 2009.
Love you all xxx
Steve's August CT scan confirmed some disease progression since his last scan in December 2009, at the end of the Velcade drug trial. The good news is that the mesothelioma is still confined just to the right lung and there is no sign of metastasis elsewhere. However, the pleural thickening in the affected lung has increased in depth and is more widespread, and the meso has now started to grow into the chest wall, on his right side. The doctor was surprised he hasn't had any pain as a result of the chest wall meso, but thinks this might be due to the very slow, gradual rate of growth of the cancer.
There was some discussion about the pros and cons of having chemotherapy, with the all attendant side effects and inherent risks, while Steve is still feeling good and able to enjoy a good quality of life. However, whilst he is pain-free at present, that's likely to change if the cancer continues to grow, especially into the chest wall. I think that factor was the determining factor in reaching a decision that the time has come to attack the cancer again.
So we are off on the chemotherapy merry-go-round in about three weeks time; a combination of pemetrexed (Alimta) and carboplatin (rather than cisplatin, at our request). This will be given as a hospital day patient once every three weeks, along with steroids, vitamin B12 injections and folic acid tablets (by the GP practice nurse) to counteract the side effects of the pemetrexed. Hopefully, another six cycles of chemo will stop the mesothelioma in its tracks or, even better, whack Leo back a bit so that Steve can continue to enjoy life without symptoms for even longer.
Steve will get his first dose of vitamin B12 and associated meds next Monday afternoon, so that they will be in his system for a couple of weeks before chemo starts. Our flu jabs have been booked in for 29 September, to reduce the risk of catching something nasty while his immune system is compromised by the chemo. Just waiting for the appointment for the first cycle now and then we can start pencilling in future sessions on the calendar to work round over the next five months or so, assuming he has the full six cycles of treatment.
When Steve was on the Velcade drug trial in 2009, we had to go to the hospital twice a week for two weeks for chemo, then every other third week for a scan. It felt like we lived there! At least this time round, Steve will have two clear weeks between sessions to relax, recover and hopefully enjoy a bit of "normal" life. Plus the side effects of carboplatin are known to be generally less severe than those associated with cisplatin.
Even so, we know it won't be easy, but at least we have a better idea of what to expect this time around and how to manage the side effects and other limitations of chemotherapy. And if the chemo does its job, we will have something extra special to celebrate in 2013 (and an excuse to enjoy a second Christmas/New Year when the side effects of the drugs have worn off :-)
Although we have been dreading this news, now that it has happened we have switched into action mode and somehow feel calm and focussed on the fight ahead. The energy we have been putting into galavanting around europe and the UK over the last couple of recent years will now be directed into fighting back. We will be following in the footsteps of other meso warriors and their partners and we know that they will be there for us when we need them, along with our family and friends, who have given us such great support since June 2009.
Love you all xxx
Posts
Action stations it is - Ray went through the 6 cycles( with cisplatin) and certainly in the first couple of sessions he had some better times in the middle of the cycle- at least this time you are prepared.
ReplyDeleteWe will be rooting for you all the way - here's to putting Leo back into his box.
lots of love and thinking of you both
Amanda
Sorry to read this. So let the fight begin and hopefully the chemo will do its job. be very fightened Leo. Good luck Steve and hugs to you both. Tess x
ReplyDeleteHi Linda, as you know I have been following your blog since last year when my husband was also diagnosed with mesothelioma and the way you have 'lived' with this disease and got on with what is important in life has been an inspiration to us. After 6 rounds of chemo, alimta and cistplatin, my husband's tumours did shrink however following that he was not a candidate for surgery. After ending chemo in May there may be some progression however he may be a candidate for a clinical trial here in Canada that will test an antibody that attacks the cancer cells in meso tumours. Here they wouldn't consider 2nd line chemo. It has been quite a year for us I can just imagine that yesterday's news for you both was difficult to hear. You are stronger now, knowing what you are facing re: the many tests and scans and chemo schedule. Our thoughts our with you and all the other warriors out there facing treatment over the next while. Thank you again. Margaret
ReplyDeletegood luck, I follow your blog with interest. I'm four and a half years post alimta/cisplatin, no surgery. hard regime so interested to see how alimta/carboplatin works out. Every three/four months at check up time I expect to have to repeat this!
ReplyDeleteLyn
Thanks to Amanda, Tess, Margaret and Lyn for the words of support and encouragement - much appreciated!
ReplyDeleteThe thought of chemo still seems rather unreal at the moment as Steve feels well and has no symptoms to speak of. I'm hoping that this general "wellness' will help him manage the side effects of the treatment when it starts in a few weeks time, once the folic acid and vitamin B supplements are embedded in his system.
Sharing our experience has helped us deal with mesothelioma and I hope it helps you too. Sending positive vibes back to you all, to help you and your partners on your meso journeys.
Linda x