Okay so the Creatinine didn't come down much, 2.35 to 2.24 and I drank more water than I thought humanly possible. Basically the problem is my kidneys cannot take 25mg of Revlimid and clear it, so it is building up and causing all my other numbers to drop when they shouldn't be. So starting today I'm back down to 10mg and getting a liter of fluid IV everyday to flush out my kidneys and to generally keep enough fluid passing through as I am finding it hard to keep up orally. I'm a little disappointed to be dropping to 10mg but 25 is just not possible given my kidney function.
Nothing else too exciting, 4 hr visit which included 2hr of IV fluid, not too bad I guess. Kristy got my IV first time and we got a quick visit from Dr McGirk which was fun so all is going pretty well.
Tuesday, October 26, 2010
Friday, October 22, 2010
10.22.10 1st Day of Session 4.
So here we are again on the wonderful ride that is cancer! My appt was at 10am and it's 12 now and we're still in the waiting room....Kristy tried to start my IV this morning and stopped after 3 tries. Sophie was very sweet and held me while Kristy tried to put the IV's in.
I have had my blood taken...and the prize goes to Mary, it took 2 more tries. Still no PICC line needed!
Well the damn Creatinine is 2.35! I'll ask for IV fluids today as I know I'm not drinking enough because of constant nausea, even plain water is tasting bad these days. All the other lab results were fine, so we'll wait and see what the doc says. Blood pressure was high today which is weird as I checked it at home 4-5 days ago and it was pretty much normal.
Dr Ganguly dropped by and said he wanted to lower the Revlimid dose because of the Creatinine level being so high. I asked if I could stay on the same 25mg and get IV fluids to help my kidneys, he agreed. I'm getting some stronger anti-nausea meds as well so I can drink more at home and hopefully bring down the Creatinine again. Somehow I think IV fluid is the way to go.
It was interesting in the waiting room today, it was packed and we got the last two seats. People were talking and sharing their cancer experiences. A really nice bunch of people and very varied stories and stages happening right there, right now...kind of crazy. It felt kind of like a support group, which was funny - one lady even came over and gave Kristy a hug. It was all a little surreal.
Well I got my wish, Dr Ganguly has written orders for me to get a litre of IV fluid before each of my three remaining chemo treatments. It can't hurt and I can snooze for the 2hrs it takes if I so wish, tough life huh!
We met Beth my Transplant coordinator. She gave me a huge folder about the "do's and don'ts" and all the tests and meetings I'll be having before I'm allowed/can go ahead with the transplant. Beth is really nice as are all the staff. I can't say enough goods things about the people there.
All going well I will post some provisional dates soon for all the fun stuff I'll be getting up to.
So 1L of IV fluids, Dex, Zofran and Velcade later plus meetings with Dr Ganguly and Beth we get to go home, a grand total of 6 hours later!
Back in on Monday or course and I'm accepting bets on the Creatinine numbers, I'm guessing on 1.82. Are you feeling lucky?
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| Sophie looking after her Dad |
I have had my blood taken...and the prize goes to Mary, it took 2 more tries. Still no PICC line needed!
Well the damn Creatinine is 2.35! I'll ask for IV fluids today as I know I'm not drinking enough because of constant nausea, even plain water is tasting bad these days. All the other lab results were fine, so we'll wait and see what the doc says. Blood pressure was high today which is weird as I checked it at home 4-5 days ago and it was pretty much normal.
Dr Ganguly dropped by and said he wanted to lower the Revlimid dose because of the Creatinine level being so high. I asked if I could stay on the same 25mg and get IV fluids to help my kidneys, he agreed. I'm getting some stronger anti-nausea meds as well so I can drink more at home and hopefully bring down the Creatinine again. Somehow I think IV fluid is the way to go.
It was interesting in the waiting room today, it was packed and we got the last two seats. People were talking and sharing their cancer experiences. A really nice bunch of people and very varied stories and stages happening right there, right now...kind of crazy. It felt kind of like a support group, which was funny - one lady even came over and gave Kristy a hug. It was all a little surreal.
Well I got my wish, Dr Ganguly has written orders for me to get a litre of IV fluid before each of my three remaining chemo treatments. It can't hurt and I can snooze for the 2hrs it takes if I so wish, tough life huh!
We met Beth my Transplant coordinator. She gave me a huge folder about the "do's and don'ts" and all the tests and meetings I'll be having before I'm allowed/can go ahead with the transplant. Beth is really nice as are all the staff. I can't say enough goods things about the people there.
All going well I will post some provisional dates soon for all the fun stuff I'll be getting up to.
So 1L of IV fluids, Dex, Zofran and Velcade later plus meetings with Dr Ganguly and Beth we get to go home, a grand total of 6 hours later!
Back in on Monday or course and I'm accepting bets on the Creatinine numbers, I'm guessing on 1.82. Are you feeling lucky?
Tuesday, October 12, 2010
Last day of 3rd session 10.11.10.
Kristy got an IV in 2nd try. She says in 6.5 years she has never had a patient with such thick skin.....what can I say, thickening my skin has been a hobby for years now.
Labs were taken after an hour of waiting, they were busy again at the clinic. All counts came back fine, Creatinine which I thought would be trending lower went up again to 1.9. I think no matter how much I hope and drink it isn't going to budge at the moment, hopefully after transplant.
No doctor visit today so just Dexamethasone Valcade and Zofran as normal. And so ends session 3.
Generally I'd say nausea is constant and a little higher, eating is harder as nothing tastes good...but as usual I manage, my weight is still a solid 167lbs and hasn't really changed. Fatigue a little higher not too bad though. I don't get the steroid high anymore, if I had to guess I'd say it's because of the higher dose of Revlimid.
So just to show you how boring our visits are here are some pics of us being bored..
Labs were taken after an hour of waiting, they were busy again at the clinic. All counts came back fine, Creatinine which I thought would be trending lower went up again to 1.9. I think no matter how much I hope and drink it isn't going to budge at the moment, hopefully after transplant.
No doctor visit today so just Dexamethasone Valcade and Zofran as normal. And so ends session 3.
Generally I'd say nausea is constant and a little higher, eating is harder as nothing tastes good...but as usual I manage, my weight is still a solid 167lbs and hasn't really changed. Fatigue a little higher not too bad though. I don't get the steroid high anymore, if I had to guess I'd say it's because of the higher dose of Revlimid.
So just to show you how boring our visits are here are some pics of us being bored..
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| This is my 'still fighting' pose. |
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| checking lab results. |
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| my chemo face. |
Saturday, October 9, 2010
Friday 10.8.10
So here I am 12noon giving you a minute by minute a/c of my visit. Kristy had to work today and therefore had to put my IV in this morning...I nearly made her late. I guess I'm getting harder to stick, third time was a charm though. According to her my veins are getting "ropey" - can't decide if I like that term or not.
I'm feeling the extra 15mg of Revlimid so hopefully it is doing its job. As always I'm interested to see the Creatinine numbers.
I got on my bike yesterday for the first time in a while. I had been going no higher than HR 130 before needing to get off the bike to stop myself from getting pretty dizzy, my red blood cells weren't carrying enough oxygen - however yesterday 145 was fine for 5-10 minutes! So that is great and a sure sign my body is getting back to a more normal fitness.
Blood taken and all the numbers are good, my RBC count is slightly higher which would a/c for me being able to workout at a higher HR, but with chemo it would be expected to go down.
John came to my appointment with me and we had a bet on the Creatinine, I thought 1.77 (i guess i must be feeling lucky), it came back 1.82 which is down from 1.94. I have a feeling the 25mg of Revlimid is going to knock my Creatinine down a bit more, because of the higher dose I feel more tired and nauseated and my taste buds are going a little crazier than before. Now very little tastes good. However if it does its job the inconvenience will be worth it. Saw the doc he seemed pretty happy with my progress. We were in and out in 2hrs 45mins!
I got another workout in before Sarah left (she was babysitting the kids) and am still able to hit 145 for over 5 mins! So all is good at the moment. I'm trying to workout everyday to see if it helps.
Here are some recent pics to liven up this post..
I'm feeling the extra 15mg of Revlimid so hopefully it is doing its job. As always I'm interested to see the Creatinine numbers.
I got on my bike yesterday for the first time in a while. I had been going no higher than HR 130 before needing to get off the bike to stop myself from getting pretty dizzy, my red blood cells weren't carrying enough oxygen - however yesterday 145 was fine for 5-10 minutes! So that is great and a sure sign my body is getting back to a more normal fitness.
Blood taken and all the numbers are good, my RBC count is slightly higher which would a/c for me being able to workout at a higher HR, but with chemo it would be expected to go down.
John came to my appointment with me and we had a bet on the Creatinine, I thought 1.77 (i guess i must be feeling lucky), it came back 1.82 which is down from 1.94. I have a feeling the 25mg of Revlimid is going to knock my Creatinine down a bit more, because of the higher dose I feel more tired and nauseated and my taste buds are going a little crazier than before. Now very little tastes good. However if it does its job the inconvenience will be worth it. Saw the doc he seemed pretty happy with my progress. We were in and out in 2hrs 45mins!
I got another workout in before Sarah left (she was babysitting the kids) and am still able to hit 145 for over 5 mins! So all is good at the moment. I'm trying to workout everyday to see if it helps.
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| Kristy & I going out to dinner. |
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| John and I doing some art...cause that's what we do. |
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| Daddy eating James' toes! |
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| Photo with Soph. |
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| James and I trying on our Halloween outfits. |
Tuesday, October 5, 2010
10.4.10
Unevenful day at the clinic, an hour wait before they took blood but in and out in 3hrs as I didn't need IV fluids. We met Abby the very nice nurse practitioner who explained that we were probably looking at 4 sessions of chemo, then harvest of stem cells, then high dose chemo, then transplant and so on. I'll put some more info and dates to this another time. So all is going okay at the moment.
I think they may need to ease back on the steroids...
but Kristy seems to like it! However cycling up hills may be an issue.
The higher dose of Revlimid seems to be fine at the moment, I take it just before bed so miss out on most of the neuropathy which is nice (it is still going away by morning).
Kristy is still putting in my IV before I go to clinic but has said she is noticing my veins are changing with chemo, they will get harder and so more difficult to get a needle into, but she is still getting in first time at the moment!
Back in on Friday for 2nd last chemo of 3rd session. Not long to go now till I get rid of all this annoying hair!
I think they may need to ease back on the steroids...
The higher dose of Revlimid seems to be fine at the moment, I take it just before bed so miss out on most of the neuropathy which is nice (it is still going away by morning).
Kristy is still putting in my IV before I go to clinic but has said she is noticing my veins are changing with chemo, they will get harder and so more difficult to get a needle into, but she is still getting in first time at the moment!
Back in on Friday for 2nd last chemo of 3rd session. Not long to go now till I get rid of all this annoying hair!
Friday, October 1, 2010
3rd Cycle of Chemo 10.1.10
So Cycle 3 is underway! We met with Dr. Aljitawi a little earlier and he was very encouraged by my response rate so far. The type of abnormal proteins I'm producing (free kappa light chains) have been reduced by 90%, so he is considering this a "good, partial remission" so far. The goal is to get me to a complete remission, with zero free kappa light chains before transplant...which will give me a better prognosis after transplant. But even if the kappa light chains do not go down any further (although they are predicting that they will continue to decline), I will still have a pretty good prognosis after transplant. So all in all the visit with the doctor today went well.
My creatinine went up to 1.97, which I predicted based on how I've been feeling. So now I'm getting 1 liter of IV fluids and hope tomorrow I have my 'roid' high with the IV fluid and steroid combo!
When my blood tests came back, I was told because of the levels I would need a blood transfusion. Kristy looked at the results and lots of values were down and it didn't make sense. She thought as the nurse took blood for the test the first tube she filled she may not have 'wasted' i.e. the saline in my IV was not discarded before putting the blood in to test. So...she asked for the test to done again...and eagle eye Kristy was right! All blood values were good and no transfusion was needed - thank you Kristy!
Because my platelets and white blood counts are normal they have raised my Revlimid dose from 10 to 25mg. They wanted to give me a full dose (which is 25mg) if possible and see how I tolerate it, the side effects so far from 10mg have been nausea, fatigue and neuropathy in my feet (numbness) which so far has gone away the next day or so but I have been promised it will 'come to stay' with more Revlimid...we'll see.
So all in all a good visit with encouraging progress. 5.5 hours is a long time to be at clinic, though.
My creatinine went up to 1.97, which I predicted based on how I've been feeling. So now I'm getting 1 liter of IV fluids and hope tomorrow I have my 'roid' high with the IV fluid and steroid combo!
When my blood tests came back, I was told because of the levels I would need a blood transfusion. Kristy looked at the results and lots of values were down and it didn't make sense. She thought as the nurse took blood for the test the first tube she filled she may not have 'wasted' i.e. the saline in my IV was not discarded before putting the blood in to test. So...she asked for the test to done again...and eagle eye Kristy was right! All blood values were good and no transfusion was needed - thank you Kristy!
Because my platelets and white blood counts are normal they have raised my Revlimid dose from 10 to 25mg. They wanted to give me a full dose (which is 25mg) if possible and see how I tolerate it, the side effects so far from 10mg have been nausea, fatigue and neuropathy in my feet (numbness) which so far has gone away the next day or so but I have been promised it will 'come to stay' with more Revlimid...we'll see.
So all in all a good visit with encouraging progress. 5.5 hours is a long time to be at clinic, though.
Monday, September 20, 2010
Monday 9.20.10 (20.9.10 uk)
Okay so we were sitting waiting in reception for so long this morning (over an hour) that I had a chance to try the Cafe and it was very nice. I had my first coffee in about 3 weeks and I swear it's better than steroids and chemo put together!!! Feeling great!!!
My creatinine is 1.75 which is fine. We saw Dr. McGuirk this morning and among other things he said he'd like to see that value come down a bit more with more chemo sessions. He also said that my next appointment won't be until October 1st (the best news of the day, as it means we have a 10 day break from this place!!) when I'll start my 3rd cycle and have labs drawn. The labs they'll check will include a measure of my free kappa light chains, which is the type of abnormal proteins I have from MM. This value has to come down to zero before they think I'm in remission and will do another bone marrow biopsy. This value is directly correlated to the paraproteins (121 prior to treatment, down to 6) they checked a couple of weeks ago, so he expects to see a good response.
My white blood cell count is back up to 5.7, which is a normal level so therefore my immune system is still functioning well. We think the transient dip on Friday was caused by Aredia, which was the IV treatment I got for bone protection.
So all in all a good visit though a slow one at 3 hours.
Okay turns out I'm going in next Friday (they called and added an extra visit) just for the blood test to show free kappa light chains, I guess it takes a few days to get results and they want everything back by the Oct 1st visit. So we should get a better picture of how I'm responding by the 1st. We'll keep you all posted.
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| getting my steroids & chemo |
My creatinine is 1.75 which is fine. We saw Dr. McGuirk this morning and among other things he said he'd like to see that value come down a bit more with more chemo sessions. He also said that my next appointment won't be until October 1st (the best news of the day, as it means we have a 10 day break from this place!!) when I'll start my 3rd cycle and have labs drawn. The labs they'll check will include a measure of my free kappa light chains, which is the type of abnormal proteins I have from MM. This value has to come down to zero before they think I'm in remission and will do another bone marrow biopsy. This value is directly correlated to the paraproteins (121 prior to treatment, down to 6) they checked a couple of weeks ago, so he expects to see a good response.
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| a very neat IV by kristy |
My white blood cell count is back up to 5.7, which is a normal level so therefore my immune system is still functioning well. We think the transient dip on Friday was caused by Aredia, which was the IV treatment I got for bone protection.
So all in all a good visit though a slow one at 3 hours.
Okay turns out I'm going in next Friday (they called and added an extra visit) just for the blood test to show free kappa light chains, I guess it takes a few days to get results and they want everything back by the Oct 1st visit. So we should get a better picture of how I'm responding by the 1st. We'll keep you all posted.
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