Thankfully, the chemo shot last week has settled relatively well, and I'm not feeling like I have been half as knocked around as I did the previous session. I am hoping this continues.
Thanks to my lovely husband GT who has been ensuring I'm resting, eating well and taking all my meds (even the grumpy - I-wanna-fight-ya ones!) and the kids are all happy and under control.
Saturday is turning into a lovely summery day!
Saturday, October 30, 2010
Thursday, October 28, 2010
Stem cell orentation done
Well chemo was again uneventful and finished in time to get to noon appointment at RNS Hospital.
Met the very nice Dr Will Stevenson and his very organised assistant Cassandra, and we have a plan for 'mobilisation of stem cells for collection' on the 1st of December. I get connected to the "vampire" for approximately 6 hours and hope like hell that I have generated enough stem cells for collection at that time, so I don't have to go back again for another session with the "vampire"!
However I have to continue to remind myself that all this hinges on the 15th NOVEMBER PET scan and what it shows, so much weight on this scan its unbelievable!
While we have stem cell collection plans and expect to do some radiotherapy over christmas period - our personal lives are on hold, and its so frustrating! I am continually saying to myself "one day at a time, one day at a time!" I have never been so short-sighted in all my life!
Met the very nice Dr Will Stevenson and his very organised assistant Cassandra, and we have a plan for 'mobilisation of stem cells for collection' on the 1st of December. I get connected to the "vampire" for approximately 6 hours and hope like hell that I have generated enough stem cells for collection at that time, so I don't have to go back again for another session with the "vampire"!
However I have to continue to remind myself that all this hinges on the 15th NOVEMBER PET scan and what it shows, so much weight on this scan its unbelievable!
While we have stem cell collection plans and expect to do some radiotherapy over christmas period - our personal lives are on hold, and its so frustrating! I am continually saying to myself "one day at a time, one day at a time!" I have never been so short-sighted in all my life!
Wednesday, October 27, 2010
Second cycle done and home relaxing,,,
Day 1 of 2nd session is all done and was a very uneventful long day. (9 to 5pm).
Kids are in bed, feeling tired but well ,,,,
Tomorrow is an early start, chemo at 8am, as I have to be at Royal North Shore by 12 to meet Dr Stevenson, and have a stem cell transplantation orentation.
If I look green, that's probably because I was feeling green,
the last session was fraught with severe allergic reactions and drama's.
I was a bit anxious - thankfully they've got lorazepam for that! give me one of those.
Kids are in bed, feeling tired but well ,,,,
Tomorrow is an early start, chemo at 8am, as I have to be at Royal North Shore by 12 to meet Dr Stevenson, and have a stem cell transplantation orentation.
Day 2 of the second session and feeling less anxious - can't you tell!
Monday, October 25, 2010
Feeling much better
I'm at the end of the 21 day cycle, appointment with Dr H tomorrow to check bloods and catch up, before another two days chemo treatment - all day wednesday and most of thursday. It's amazing how quickly 21 days cycles come around!
Tuesday, October 19, 2010
Home again, home again gig-id-de-gig!
Goodbye to The SAN, thank you for making me feel human again, I'm very pleased to be heading home after 5 nights of loving care!
Monday, October 18, 2010
Still in hospital
It's monday, still not 100 percent but mending steadily.
Will see what dr h has to say tomorrow.
Sunday, October 17, 2010
A long, hard week
After feeling below average all week, on Thursday my temp was bumping between 37.5-38.
To cut a very long story short, off to the SAN ER as per Dr's orders, bloods come back quickly - neutropenia and low platelets!
Neutropenia means neutrophils are low, neutrophils are a type of white blood cell that fights infection. On thursday mine were ZERO, mimimun should be 2
Platelets help your blood clot, and having low platelets increases the risk of bleeding and bruising. They came back at 23, minimum should be 150
The details are boring, lets just say I have never been so sick.
How to fix neutropenia - high dose antibiotics. These fight infections so the body's neutrophils can recover on their own.
How to fix low platelets - platelet transfusion of course! (it looks like liquid skin)
Its sunday and i'm feeling much better, neutrophils are at 2.2 and platelets are at 53.
Still in hospital, resting, will see what the big kahuna says tomorrow!
Thursday, October 7, 2010
Day Three of the second beginning of the End!
Today was day 3 of the 1st of 3 chemo treatments.
Walked in not feeling that crash hot - and thanks to the lovely nurse-ladies who gave me cuddles and caring, my day turned around quickly and completely.
I also got the "bridal suite" to have a nap in and that really made a difference. Special thanks also to Nads for her visit and delicious honeycomb crumbles - and to Marion for encouraging me to have the sleep.
How quickly time flies when you are totally out to it in la-la land!
Still feeling pretty good this evening all things considered, and the nausea remains a bay!
Walked in not feeling that crash hot - and thanks to the lovely nurse-ladies who gave me cuddles and caring, my day turned around quickly and completely.
I also got the "bridal suite" to have a nap in and that really made a difference. Special thanks also to Nads for her visit and delicious honeycomb crumbles - and to Marion for encouraging me to have the sleep.
How quickly time flies when you are totally out to it in la-la land!
Still feeling pretty good this evening all things considered, and the nausea remains a bay!
Wednesday, October 6, 2010
Day Two of the Second Beginning of the End!
Rumour has it that most of the Drs and nureses very rarely seen an allergic reaction to Etoposide, probably 1 in 5-10 years! So I was the talk of the "what happened yesterday" convo in tea room today!
Juice-Bar was much quiter today, no drama's with any of the drugs and was out of there by 3pm.
Its probably obvious, due to the fact that I have changed drug regimen, however I don't get the fluro-orange juice any more! Could still loose my hair, but was suggested that "thinning" might be more likely.
More interesting new about hair is that - I plucked my eyebrows this morning for the first time in 4 months! and my nana-goatie hairs are on the regrowth - apparently the massive dose of steriod I'm taking will truely kick in a big pile of testosterone, so I may have more whiskers than glenn very shortly - and alreadly searching a good waxing bar.
The high dose of dexamethasone (steriod) has already got me in fighting-mode - so this is your one and only warning - and a likely Michele "mood" for the next week or so ,,,,,, I'd be ducking and weaving if I were you ,,,, only the brave and stupid will approach (with much care and full body armour!)
I'm even getting dexamethasone eye drops ,,,,, and of course all the anti-drugs you can possibly imagine - anti-nausea, anti-dry-eye, anti-insomina and anti-constitpation !!! Nexium for the intergestion caused by all the drugs!
Prevention drugs have been reinstated - fluconazole and bactrim DS
I haven't come home in the "happy-sunshine" mood I'm normally in, but hoping it will pass, as soon as I get my head around everything I hope.
Shorter day tomorrow (or so they say) but I've discovered that it generally will be over, when its over.
Juice-Bar was much quiter today, no drama's with any of the drugs and was out of there by 3pm.
Its probably obvious, due to the fact that I have changed drug regimen, however I don't get the fluro-orange juice any more! Could still loose my hair, but was suggested that "thinning" might be more likely.
More interesting new about hair is that - I plucked my eyebrows this morning for the first time in 4 months! and my nana-goatie hairs are on the regrowth - apparently the massive dose of steriod I'm taking will truely kick in a big pile of testosterone, so I may have more whiskers than glenn very shortly - and alreadly searching a good waxing bar.
Day 2, of cycle 1 all done!
The high dose of dexamethasone (steriod) has already got me in fighting-mode - so this is your one and only warning - and a likely Michele "mood" for the next week or so ,,,,,, I'd be ducking and weaving if I were you ,,,, only the brave and stupid will approach (with much care and full body armour!)
I'm even getting dexamethasone eye drops ,,,,, and of course all the anti-drugs you can possibly imagine - anti-nausea, anti-dry-eye, anti-insomina and anti-constitpation !!! Nexium for the intergestion caused by all the drugs!
Prevention drugs have been reinstated - fluconazole and bactrim DS
I haven't come home in the "happy-sunshine" mood I'm normally in, but hoping it will pass, as soon as I get my head around everything I hope.
Shorter day tomorrow (or so they say) but I've discovered that it generally will be over, when its over.
Tuesday, October 5, 2010
Day One of the Second Beginning of the END!
Things were a little unorganised at the clinic this morning after the long weekend , however once seated it all started to fall into place.
I had my secret "anti-anxiety nausea" tablet, because I was starting to feel sick in the stomach before anything had started.
Finally my drugs had arrived, the canula was in and the pumping machine was off and running. I had started to settle in then after about 10 minutes, I started to feel funny - eye's were really itchy, feeling hot, rednees of the face, dizziness, shortness of breath, unable to breath through the nose and my ear drums were bulging outwards with my increased heart rate (very bizzare feeling!) Yep, allergic reaction to the E in Rice (the Etoposide).
In rolls the big Kahuna (Dr H), the anti-allergy drugs are pumped into the line, the oxygen bottle is rolled up and I take oxygen to help with the breathing ,,,, and finally after a flutter of nervous activity for about 10 mins or so, thankfully things settled down. A relief to all the other patient "onlookers" as well I could imagine!
The best part was I got rolled out to the "bridal suite" and got to have a room and bed to myself, and have a little sleep for a few hours while the worked out what to do next and continued to pump Mabthera into me.
SO - what next? New drug regimen - called DHAC.
A two day chemo treatment with 21 days rest.
Dexamethasone (DH) is a steriod and a huge part of the treatment
Cytarabine (A)
Carboplatin (C)
Tommorrow off the the juice-bar again for another go. Can't wait!
GT - my right hand man!
Waiting for the next round!
I had my secret "anti-anxiety nausea" tablet, because I was starting to feel sick in the stomach before anything had started.
Finally my drugs had arrived, the canula was in and the pumping machine was off and running. I had started to settle in then after about 10 minutes, I started to feel funny - eye's were really itchy, feeling hot, rednees of the face, dizziness, shortness of breath, unable to breath through the nose and my ear drums were bulging outwards with my increased heart rate (very bizzare feeling!) Yep, allergic reaction to the E in Rice (the Etoposide).
In rolls the big Kahuna (Dr H), the anti-allergy drugs are pumped into the line, the oxygen bottle is rolled up and I take oxygen to help with the breathing ,,,, and finally after a flutter of nervous activity for about 10 mins or so, thankfully things settled down. A relief to all the other patient "onlookers" as well I could imagine!
The best part was I got rolled out to the "bridal suite" and got to have a room and bed to myself, and have a little sleep for a few hours while the worked out what to do next and continued to pump Mabthera into me.
SO - what next? New drug regimen - called DHAC.
A two day chemo treatment with 21 days rest.
Dexamethasone (DH) is a steriod and a huge part of the treatment
Cytarabine (A)
Carboplatin (C)
Tommorrow off the the juice-bar again for another go. Can't wait!
Sunday, October 3, 2010
Flame-grilled chookie and GT is cheerin' the Dragons sweet success!
DRAGONS DEFEAT ROOSTERS IN 2010 NRL GRAND FINAL
While there is a big event occuring in my life, it cannot go unmentioned that there has been a big event in GT's life TODAY, oh yes, the Dragons got up for the first time in 31 years! Wayne Bennett is a legend.
While the game is done, the sweet smell of chookie roasting will linger in the Thompson household for probably much longer than I bear to consider, however, for Glenn I am happy.
Special thanks to our friends Ali and Trav who hosted a lovely NRL Grand Final bash in the GONG, and who were brave enough to invite Glenn to partake in the event, considering how Dragons-mad he truely is.
While there is a big event occuring in my life, it cannot go unmentioned that there has been a big event in GT's life TODAY, oh yes, the Dragons got up for the first time in 31 years! Wayne Bennett is a legend.
While the game is done, the sweet smell of chookie roasting will linger in the Thompson household for probably much longer than I bear to consider, however, for Glenn I am happy.
Special thanks to our friends Ali and Trav who hosted a lovely NRL Grand Final bash in the GONG, and who were brave enough to invite Glenn to partake in the event, considering how Dragons-mad he truely is.
Friday, October 1, 2010
The Lone Fig ,,,
,,,, was a nice bottle of semillion sav blanc, that we had at Hornsby RSL after the meeting with the big Kahuna.
(up front I apologise for any slurring ,,,,)
The biopsy was inconclusive. And the guy that would normally do the key-hole biopsy is in the USA, so Dr H (aka the big Kahuna) feels that the PET scan should stand with its conclusion of "Residual disease" about the size of a LARGE KIWI fruit. We could wait another 4 weeks to have key-hole surgery to confirm there is residual lesion or just "go for it" on the outcome of the PET scan.
We have decided to go with the PET scan diagnosis ie (assume residual disease) therefore chemo will start on Tuesday! Ah! Tuesday is 6 1/2 hours chemo, then Wednesday and Thursday are another 4 1/2 hrs chemo treatment. This is different treatment from the first chemo set - instead of R-CHOP its called R_ICE, therefore I am offically a ICE addict for 3 months.
R stands for rituximab (Mabthera)
I stands for Ifosamide
C stands for Carboplatin
E stands for Etoposide
RICE is used for second-line therapy prior to autologous stem cell transplantation for relapsed or primary refractory diffuse large B-Cell lymphoma (DLBCL)
Each 3 day chemo treatment has a 21 day recovery cycle, and after the 2nd chemo treatment we will do another PET scan to see how things are going.
Finish the chemo, and then there is approximately 4 weeks radio and after the radio is the stem cell transplant. Expected end of this treatment is Feb 2011.
Here I go again!
(up front I apologise for any slurring ,,,,)
The biopsy was inconclusive. And the guy that would normally do the key-hole biopsy is in the USA, so Dr H (aka the big Kahuna) feels that the PET scan should stand with its conclusion of "Residual disease" about the size of a LARGE KIWI fruit. We could wait another 4 weeks to have key-hole surgery to confirm there is residual lesion or just "go for it" on the outcome of the PET scan.
We have decided to go with the PET scan diagnosis ie (assume residual disease) therefore chemo will start on Tuesday! Ah! Tuesday is 6 1/2 hours chemo, then Wednesday and Thursday are another 4 1/2 hrs chemo treatment. This is different treatment from the first chemo set - instead of R-CHOP its called R_ICE, therefore I am offically a ICE addict for 3 months.
R stands for rituximab (Mabthera)
I stands for Ifosamide
C stands for Carboplatin
E stands for Etoposide
RICE is used for second-line therapy prior to autologous stem cell transplantation for relapsed or primary refractory diffuse large B-Cell lymphoma (DLBCL)
Each 3 day chemo treatment has a 21 day recovery cycle, and after the 2nd chemo treatment we will do another PET scan to see how things are going.
Finish the chemo, and then there is approximately 4 weeks radio and after the radio is the stem cell transplant. Expected end of this treatment is Feb 2011.
Here I go again!
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