The blog, I know I've been slacking.... It takes a lot of brain power to formulate words and press the little buttons with the letters to magically make them appear on your screen.
This treatment started off like a stay-cation (if the marketing industry has indeed coined this a term). Uncle John (Nyhan) and family pulled a lot of strings and were extremely generous to John Michael and myself the night before chemo. Thursday from work we headed into Boston, and hit zero traffic, to check in at the Holiday Inn, Brookline; where we were upgraded to a suite! The hotel has an indoor pool, jacuzzi, and a chess board where the pieces are the sizes of a three year old, if only I played chess! From there we changed into our Red Sox gear and headed to a fully paid dinner at Remy's Restaurant, if you have not checked this place out - get there! After dinner we headed to our behind home plate seats, to watch Lackey pitch a Red Sox win! Seeing the weather was perfect, and Boston had closed down streets due to the Celtics game also playing that night, we walked back to the hotel and watched the C's (sadly lose). The best part to all of this was sleeping in until 8:00am! By this time we would have already been on the road for an hour and a half. We checked out and took the 10 minute car ride to BI, and there we were faced with reality...
Blood work, Dr. Appointment, 3 stabs for the IV, 6 hours of chemo, and more than 2 hours of traffic on the way home. The day after chemo was surprisingly okay, I'm not sure how this happened but my bodily misery set in slowly; but unfortuantely it did set in. It was the normal awfulness, will I will spare you of repeating; although, I am past the week mark so they symptoms seem to have subsided, for the most part.
Upcoming Appts:
CT Scan: Saturday 7/3/10
Results/Chemo: Friday 7/9/10
Saturday, June 26, 2010
Thursday, June 17, 2010
Dana Farber Consult
I think I might have confused some of you as to what the DF meeting consisted of... this was not a second opinion meeting, rather than an informative session on various treatments that another doctor might know of that BI doesn't in case the Carbo/Taxol treatment isn't working.
John and I met with Dr. Gandhi, who is a thoracic oncologist at Dana Farber. She reviewed my BI medical records prior to us getting there, and stated that the treatment that I was given at BI would have been the same treatment that would have been given at DF. She agreed that we should wait for the results of my next CT Scan before considering any kind of alternative treatment.
Dr. Gandhi did mention that DF is running a study on thymic cancers, in that some cases might be connected to an abnormal crossing of genes (its a complicated theory with many big words that I don't remember). She is having my biopsy slide sent over from BI to see if my thymic carcinoma could possibly be from this abnormality. If it is in fact the crossing of these particular genes that could have caused my thymic carcinoma there is a treatment that has been around for 5 years that has shown some positive results in patients; her worry is that there will not be enough of the slide to get a conclusive result. I mentioned that I would be willing to do another biopsy at DF if the carbo/taxol treatment wasn't working and we did need to seek an alternative treatment.
We spoke about the pros/cons of Phase I trials, Phase II trials and the difficulty of finding one that relates to my type of cancer, the possibilty and burden of travelling to be involved with a clinical trial, and in general the time and dedication that clincal trials take from a person.
There were a lot of "IFs" because of course we are hoping that the carbo/taxol is indeed working. We will sit down again with Dr. Gandhi at DF again once the CT Scan has been done and we have the results.
I have to say that as a facility, I like BI better and I hope not to have to change; but with my current oncologists and the results of future tests we will cross that bridge when we come to it.
6/18: Chemo treatment #2
John and I met with Dr. Gandhi, who is a thoracic oncologist at Dana Farber. She reviewed my BI medical records prior to us getting there, and stated that the treatment that I was given at BI would have been the same treatment that would have been given at DF. She agreed that we should wait for the results of my next CT Scan before considering any kind of alternative treatment.
Dr. Gandhi did mention that DF is running a study on thymic cancers, in that some cases might be connected to an abnormal crossing of genes (its a complicated theory with many big words that I don't remember). She is having my biopsy slide sent over from BI to see if my thymic carcinoma could possibly be from this abnormality. If it is in fact the crossing of these particular genes that could have caused my thymic carcinoma there is a treatment that has been around for 5 years that has shown some positive results in patients; her worry is that there will not be enough of the slide to get a conclusive result. I mentioned that I would be willing to do another biopsy at DF if the carbo/taxol treatment wasn't working and we did need to seek an alternative treatment.
We spoke about the pros/cons of Phase I trials, Phase II trials and the difficulty of finding one that relates to my type of cancer, the possibilty and burden of travelling to be involved with a clinical trial, and in general the time and dedication that clincal trials take from a person.
There were a lot of "IFs" because of course we are hoping that the carbo/taxol is indeed working. We will sit down again with Dr. Gandhi at DF again once the CT Scan has been done and we have the results.
I have to say that as a facility, I like BI better and I hope not to have to change; but with my current oncologists and the results of future tests we will cross that bridge when we come to it.
6/18: Chemo treatment #2
Thursday, June 10, 2010
Hair we go again...
So yes, as the dorky play on words above suggests, I am losing my hair... again. As anticipated two weeks after my first treatment it has begun to fall out. This is the messy part, when everything gets itchy and hair is Everywhere! My thinking is that I'm going to mix it up with with different color wigs this time, it's not as if it's a secret that it is infact a wig. Last summer I opted not to wear the wig often, it was sweaty, itchy and slid backwards. This time around I am looking at a partial wig that doesn't cover the top of your head but allows hair to hang down, so I could wear a hat or scarf, as I did last time, but this time it would appear as though I had hair as well. I figure, why not, it's covered by insurance anyway.
Good News!
I apologize, I forgot to report this earlier. The CBC blood work came back good; there is no need for the white cell boosting shot, at least not at this point.
Other good news, I feel great! Thursday, June 3rd was one week after chemo was administered; I started out the day as miserable as the days previously in the week, but by late afternoon I was back to normal. It was like a switch where by body had finally reached the trampoline and bounced back! At least now I have a time frame for feeling miserable.. so to avoid my grumpiness, hold off on all contact for 7 days after chemo. ☺
On the research front: John and I are going to be sitting down with a Doctor at Dana-Farber on Tuesday the 15th of June. Dr. Leena Gandhi is involved with thoracic clinical trials, our meeting is just in info-session. After two cycles of the carbo/taxol treatment I will be re-scanned, if the result of that scan is that this chemo isn't working it'll be nice just to have a fresh opinion on the matter.
John and I have been very busy lately. After many, many discussions and number pulling, we came to the very hard decision that we are going to have to put our house up for sale. We have been working these last few weeks to declutter, organize and prepare for listing our house. Part of this process will be to have our first ever Yard Sale this weekend (6/12/10), wish us luck! We were fortunate enough the last couple times I was sick to scrape by and keep the house; this time we feel that it is in our best interest to sell. This will give us the opportunity to yes use that money elsewhere each month, but also to possibly move to a condo where outdoor maintanence won't be an issue, and there will fewer rooms and square footage to care for. This is a sad step, and will be a long process I'm sure; but will hopefully in the end just be a sidestep until we can someday move into the house of our dreams.
On another note, I have to say how blessed we are by the amazing family and friends we have. I haven't asked for permission to mention any names, so I won't; but you know who you are and Thank You! Within the past month... John and I received fantastic tickets to the red sox game, and were able to eat at Jerry Remy's new restaurant because of a gift card we had received, and were even given money for parking - it was a much needed, fun night out that we otherwise never would have been able to pull off! Our groceries last week were covered by a Hannaford gift card that we anonymously received. This is in addition to the care package that was dropped off at our house, upcoming plans for a lucky strike bowling night that was donated to us, the several prayer cards, and checks we have received. I have to tell you how fortunate we feel that in this time of need the people we are already lucky enough to have in our lives pull together to help us, not only get by on an everyday basis, but to also make sure that we take advantage of the "quality of life" aspect that you often hear about when it comes to cancer patients.
Upcoming Appts:
Tuesday, June 15th: Dr. G @ Dana-Farber
Friday, June 18th: Dr. H then Chemo @ BI
Good News!
I apologize, I forgot to report this earlier. The CBC blood work came back good; there is no need for the white cell boosting shot, at least not at this point.
Other good news, I feel great! Thursday, June 3rd was one week after chemo was administered; I started out the day as miserable as the days previously in the week, but by late afternoon I was back to normal. It was like a switch where by body had finally reached the trampoline and bounced back! At least now I have a time frame for feeling miserable.. so to avoid my grumpiness, hold off on all contact for 7 days after chemo. ☺
On the research front: John and I are going to be sitting down with a Doctor at Dana-Farber on Tuesday the 15th of June. Dr. Leena Gandhi is involved with thoracic clinical trials, our meeting is just in info-session. After two cycles of the carbo/taxol treatment I will be re-scanned, if the result of that scan is that this chemo isn't working it'll be nice just to have a fresh opinion on the matter.
John and I have been very busy lately. After many, many discussions and number pulling, we came to the very hard decision that we are going to have to put our house up for sale. We have been working these last few weeks to declutter, organize and prepare for listing our house. Part of this process will be to have our first ever Yard Sale this weekend (6/12/10), wish us luck! We were fortunate enough the last couple times I was sick to scrape by and keep the house; this time we feel that it is in our best interest to sell. This will give us the opportunity to yes use that money elsewhere each month, but also to possibly move to a condo where outdoor maintanence won't be an issue, and there will fewer rooms and square footage to care for. This is a sad step, and will be a long process I'm sure; but will hopefully in the end just be a sidestep until we can someday move into the house of our dreams.
On another note, I have to say how blessed we are by the amazing family and friends we have. I haven't asked for permission to mention any names, so I won't; but you know who you are and Thank You! Within the past month... John and I received fantastic tickets to the red sox game, and were able to eat at Jerry Remy's new restaurant because of a gift card we had received, and were even given money for parking - it was a much needed, fun night out that we otherwise never would have been able to pull off! Our groceries last week were covered by a Hannaford gift card that we anonymously received. This is in addition to the care package that was dropped off at our house, upcoming plans for a lucky strike bowling night that was donated to us, the several prayer cards, and checks we have received. I have to tell you how fortunate we feel that in this time of need the people we are already lucky enough to have in our lives pull together to help us, not only get by on an everyday basis, but to also make sure that we take advantage of the "quality of life" aspect that you often hear about when it comes to cancer patients.
Upcoming Appts:
Tuesday, June 15th: Dr. G @ Dana-Farber
Friday, June 18th: Dr. H then Chemo @ BI
Wednesday, June 2, 2010
Effects of Round 2 Chemo
UGH! How did I forget how awful this is?!
It is just about one week after my first, second round of chemo and I'm still miserable. I forgot just how miserable I felt after being a sick grouch for a straight week.
To compare Taxol to VP16 is fairly easy I suppose. VP=puking, Taxol = pain. Unpleasant either way. As with Round 1, the night (very early morning) after my chemo treatment I woke up feeling very nauseous, this was a continuous feeling for about three days, then subsided to waves of nausea, just to keep it interesting. Tired, foggy-brained, and blah are all "same story" symptoms, as I'll call them.
Pain... pain is not a symptom that I was expecting. When someone tells you that you might ache from the medicine, I'm thinking, okay maybe a sore muscle here or there - - NO! Pain, Taxol gives pain (just for clarification). Saturday I began getting very sore, but Sunday, I could hardly walk on my feet. Even to take a few steps was extremely painful, not to mention the numbness and tingling that occurs every so often. This pain, which for me has been mostly in my hips, legs with occasional back pain is still ongoing, I rely on advil or aleve to take the edge off (which only sometimes helps). As with the last time, at the 5/6 day mark, my throat and neck glands swell and are very tender, which includes my shoulders and the back of my neck.
To sum up.... I'm a mess. A miserable mess, that will hopefully come out of this post-chemo rut soon!
Tomorrow I will go for blood work; the result of my cbc will determine if I will have to receive the neulasta shot the day after my next chemo treatment.
It is just about one week after my first, second round of chemo and I'm still miserable. I forgot just how miserable I felt after being a sick grouch for a straight week.
To compare Taxol to VP16 is fairly easy I suppose. VP=puking, Taxol = pain. Unpleasant either way. As with Round 1, the night (very early morning) after my chemo treatment I woke up feeling very nauseous, this was a continuous feeling for about three days, then subsided to waves of nausea, just to keep it interesting. Tired, foggy-brained, and blah are all "same story" symptoms, as I'll call them.
Pain... pain is not a symptom that I was expecting. When someone tells you that you might ache from the medicine, I'm thinking, okay maybe a sore muscle here or there - - NO! Pain, Taxol gives pain (just for clarification). Saturday I began getting very sore, but Sunday, I could hardly walk on my feet. Even to take a few steps was extremely painful, not to mention the numbness and tingling that occurs every so often. This pain, which for me has been mostly in my hips, legs with occasional back pain is still ongoing, I rely on advil or aleve to take the edge off (which only sometimes helps). As with the last time, at the 5/6 day mark, my throat and neck glands swell and are very tender, which includes my shoulders and the back of my neck.
To sum up.... I'm a mess. A miserable mess, that will hopefully come out of this post-chemo rut soon!
Tomorrow I will go for blood work; the result of my cbc will determine if I will have to receive the neulasta shot the day after my next chemo treatment.
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