And so the adventure continues...
Ok... update on the ongoing adventure! This week I guess ends my holiday from treatments/medical appts. I guess. I have to go to the hospital (Vancouver General Hospital aka VGH) Thursday morning to get my second port-a-cath inserted. The first one I had was back in 2007. I finished my FOLFOX (well, minus the OX for the last two sessions) back at the end of Oct 2007... and a couple of months later, (Dec?) we had the device taken out. Little did we know in March 2008, a mere 3 months later, my diagnosis would change from Stage III to Stage IV when they found multiple (12) nodules in my lungs. Grrrr! But they were lazy little suckers... for the first time in my life I actually appreciated something being "lazy". Lazy cancer means it's there, but it's not growing or active... which works for me. There is no way they can take out both my lungs... and yes, those nodes are throughout both lungs. I did get one, the largest one, removed by RFA, so now I'm down to 11 nodules. The good news... no new growth in 2 years.
Well, last spring some of those nodules decided to wake up and become a little more active... and started growing. Not only that, they found a lesion in my kidney. HELLOOOO? Colon cancer doesn't usually travel to one's kidney... but then, it doesn't usually travel to one's adrenal gland above the kidney and it did for me (which I had surgery back in 2008 to remove the gland). Well, upon further inspection, the renal surgeon does not think it's a colon cancer spread in the kidney... it's a brand new primary cancer (Kidney cancer). Oh joy... two kinds of cancer! I don't know what would have been better... to find out it's yet another spread of the colon cancer or that it's it's own primary cancer. Either option doesn't sound too good.
So, in June, I went on Xeloda. Xeloda is the oral form of 5FU. Normally speaking, they don't use a chemo that you've already been on because your system will reject it and not respond. But since it was June 2010 and the last time I was on 5FU was Oct 2007, my oncologist thought enough time without chemo may have passed and my system might think it's a new chemo. Well, the CAT scan after three months (in Sept) was excellent! A 33% shrinkage in all the larger nodules. Yippee! Ok, I was having some serious heel issues with the Xeloda, but if it was producing those kind of results, then I'm game to put up with them. Three more months and I had a CAT scan in December... that's when the disappointing news came. Not only was there no more shrinkage but two of them had started to grow again. We still are ahead of where we were when we started the Xeloda in June, but the Xeloda has ceased to work.
Sooooo... this week, I'm off to get the port-a-cath inserted. Then on Feb 4th I'll get the blood work done and visit with my oncologist... because on Feb 7 I start Irinotecan. I have not been on this so am reading what others here have to say about the side affects. I have heard that the main one is loss of hair... as well as potential diarrhea problems. So on Tuesday, I am going to a 2 hour "Looking good while on chemo" workshop that is put on by the Cancer Agency. It's a free one where they have hairpiece specialists, cosmeticians, etc. coming in to show how to apply makeup if you don't have eyebrows/eyelashes and wig care/selection/information if you want to get a wig, or how to tie scarves/hats, etc. I figure it wouldn't hurt to get the information and be prepared for Feb 7.
The battle continues... now it's a new chemo. I'm a little nervous only because I haven't been on this chemo so I'm not sure how I will respond. The two things I can't stand are getting sick to my stomach or scary diarrhea if I'm not at home. If I feel that it's going to be unpredictable, then I know I won't leave the apartment... so I'm keeping my fingers crossed that this is not the case.
That's my update
Cheryl
Comments
-
Hang in there Cheryl
sounds like you've been living your life well and I imagine you will continue to do that, regardless. I'll be thinking of you as you start down this path of more medical procedures and chemo. For me, all that can be disruptive and challenging and downright scary; doing the things I love helps balance all that out.
all the best, Leslie0 -
Hi Cheryl, so sorry to hear
Hi Cheryl, so sorry to hear of your lastest DX. I have been on the irronotecan and I did loose my hair and have bowel issues. I would really encourage you to drink plenty of water. Two different times I had issues as I did not stay hyderated enough and you don't need that too! You sound like a women who gets to the problem at hand and handles it well. My guess is you will deal with these issues as well. It must have been discouraging to get the news of kidney cancer, I know I am thrilled when I get my scans and it has not moved! It is certainly enough to worry about the primary location. I have had my port since 4/08 and fortunately it has continued to work well. You are in my thoughts and prayers as you proceed down this crazy road! You are a great inspiration to me and many others. You are in my prayers. Best to you. Jean0 -
Cheryl
I was just thinking of you yesterday + wondering when your treatment starts + how you are doing, so thanks for answering my questions. It sounds like you have things under control. It is good to know possible side effects, even though we never know how each individual will be affected. Is it the "Look Good, Feel Better" program you are going to? If so, my husband was on the committee which brought the program to Canada (it was already in the US). It is extremely successful + I have heard many testimonials from cancer survivors regarding how much the program made a difference to them when we have attended fund-raising events. The program is funded by the Canadian Cosmetics and Toiletries Association. You also get samples to take home. The woman who heads the association is a 20+ year survivor of ovarian cancer. I hope you enjoy it, whether it is this program or another one.
PS, Thanks for the cheese cracker recipe, they were fabulous!
Bonne Chance!0 -
So sorry, Cheryl
Oh, Cheryl.
I hate to look at the picture of your happy little face and know you have to go through all this mess again. I'm so sorry it's happened to you! I've been thinking of you lately and hoping you were just swimming along in a little sea of happiness.
Hope you get some good information at the workshop. I'm sure you'll continue to be as beautiful as ever, whether you lose your hair or not!
*hugs*
Gail0 -
Sorry to Hear your news
Cheryl,
Stay strong and keep up the fight. You have always been so supportive of all the newbies on this board, including me. You gave me encouragement and support when I first was diagnosed and through my chemo. My thoughts and prayers will be with you for successful treatment and recovery.
Paula0 -
Update continued...
Thanks for the responses everyone! The one great thing about this support board, when you know you have to continue on with treatments, or you are about to start new treatments, or you just have to continue with all the multitude of medical appts.... well, it may sounds like I'm complaining (and sometimes I must admit, I am whining about all the appts. then the waits if the doctor(s) are running behind)... but in fact, I truly am grateful. And more so that I can come here and think out loud in front of you all and get your feedback to my thoughts... or just whine/complain because I know we all get to that point at some point
So, the treatments are my plan for the 11 nodules in the lungs and obviously, if they are working, I will be on the irinotecan for a minimum of 6 months, a 4 hour infusion every three weeks. A CAT scan in three months to see how it's doing and then another CAT scan three months after that one. This week's surgical procedure is just to insert the port-a-cath so that these treatments can be infused with the least amount of discomfort.
As for the kidney tumour... that one is going to get zapped with an RFA procedure. I was at the kidney surgeon (who is another one of my favourite doctors) and he said that he took my case to the renal advisory board because my case is always an enigma. After going over all my scans, history, etc., all 6 specialists agreed that it was more than likely kidney cancer and not a colon cancer met and they agreed unanimously that I was a good candidate for the procedure. The only catch... they don't want me on chemo when they do the procedure. Meanwhile, my surgeon doesn't want me to wait to start the chemo... so chemo goes ahead and when I get a break from the chemo (most likely after 6 months) we will then do the RFA. He says there is absolutely nothing to worry about with this tumour... it is a classic one and it will be a good few years yet before it would grow to any size that would be worrisome. It is self-contained and right now it's more important to stop the lung tumours from growing anymore.
So, chemo, then RFA.
Anne... yes, it's the "Look Good, Feel Good" program and I've heard wonderful things about it as well. Good for your husband and the committee for bringing this one into Canada. I'll let you know what I think of it after I've been on Tuesday
Hahaha... don't get me thinking about those Cheese Cracker/Cookies... then again, maybe I should make a batch to have on hand . Unfortunately, they are soooo addictive!!
Cheryl0 -
Cheryl
Cheryl,
You continue to be an amazing lady. You are going through so much and yet you are so supportive of everyone. You know I will send warm thoughts your way. I hope this new chemo does a number on those dam* mets.
Aloha,
Kathleen0 -
Got the 2-fer, too! (Rectal and breast)...
I LOVE your attitude, Cheryl....always have!!!!
I'm not sure what the new chemo you will get is....is it a combo of 2 others?
5FU is the 'workhorse chemo', my onc used to say. And, when I asked about using it more than once, he said it is possible...
I'm sending my best vibes up for you, my dear! Keep that beast on the RUN!!!
Dutch hugs, Kathi0 -
Hey CherylCherylHutch said:Update continued...
Thanks for the responses everyone! The one great thing about this support board, when you know you have to continue on with treatments, or you are about to start new treatments, or you just have to continue with all the multitude of medical appts.... well, it may sounds like I'm complaining (and sometimes I must admit, I am whining about all the appts. then the waits if the doctor(s) are running behind)... but in fact, I truly am grateful. And more so that I can come here and think out loud in front of you all and get your feedback to my thoughts... or just whine/complain because I know we all get to that point at some point
So, the treatments are my plan for the 11 nodules in the lungs and obviously, if they are working, I will be on the irinotecan for a minimum of 6 months, a 4 hour infusion every three weeks. A CAT scan in three months to see how it's doing and then another CAT scan three months after that one. This week's surgical procedure is just to insert the port-a-cath so that these treatments can be infused with the least amount of discomfort.
As for the kidney tumour... that one is going to get zapped with an RFA procedure. I was at the kidney surgeon (who is another one of my favourite doctors) and he said that he took my case to the renal advisory board because my case is always an enigma. After going over all my scans, history, etc., all 6 specialists agreed that it was more than likely kidney cancer and not a colon cancer met and they agreed unanimously that I was a good candidate for the procedure. The only catch... they don't want me on chemo when they do the procedure. Meanwhile, my surgeon doesn't want me to wait to start the chemo... so chemo goes ahead and when I get a break from the chemo (most likely after 6 months) we will then do the RFA. He says there is absolutely nothing to worry about with this tumour... it is a classic one and it will be a good few years yet before it would grow to any size that would be worrisome. It is self-contained and right now it's more important to stop the lung tumours from growing anymore.
So, chemo, then RFA.
Anne... yes, it's the "Look Good, Feel Good" program and I've heard wonderful things about it as well. Good for your husband and the committee for bringing this one into Canada. I'll let you know what I think of it after I've been on Tuesday
Hahaha... don't get me thinking about those Cheese Cracker/Cookies... then again, maybe I should make a batch to have on hand . Unfortunately, they are soooo addictive!!
Cheryl
Hi Cheryl,
I was sure hoping that those tumors of yours in the lungs would just continue to stay dormant! So sorry about the new primary cancer in the kidney. But, you've got a plan and your doctors seem to be on top of it all. So, that is good news- there is definitely still HOPE
You and I both have those nasty multiple tumors in the lungs. I could never get them to give me a number- I still don't know how many are there in my lungs.
Well, Folfiri isn't fun, but it is definitely easier than Folfox.
About the hair... well, you'll just have to wait and see. It falls out for some and not for others. My scalp definitely got all sore and tingly and I had several weeks of thinning hair- lots between my fingers when I washed my hair & lots in my brush. But, I never lost it and it didn't get so thin as people out and about would look at me and notice much. The people who knew me well could see my hair wasn't in as good of shape as it was, but that was about it- really. Then, it could go the other way- sure hope it stays in for you. But, it does grow back, as you know
Hugs to you, Cheryl- you can do this, lousy as it is, you can do this! You're one strong lady and I know you'll get the fight in you!
Hugs,
Lisa0 -
2-fer... I like thatKathiM said:Got the 2-fer, too! (Rectal and breast)...
I LOVE your attitude, Cheryl....always have!!!!
I'm not sure what the new chemo you will get is....is it a combo of 2 others?
5FU is the 'workhorse chemo', my onc used to say. And, when I asked about using it more than once, he said it is possible...
I'm sending my best vibes up for you, my dear! Keep that beast on the RUN!!!
Dutch hugs, Kathi
Haha... I like that term, Kathi... when I think of 2-fer's I think in terms of tickets. Like a preview performance before an opening night quite often will be a 2-fer performance (2 tickets for the price of one). So yes, I guess I can say I belong to the 2-fer club... but I would just as soon say "thanks, but no thanks... I don't need to start collecting these puppies"
Oh, I'm sure there's no doubt that a chemo can be used more than just once... ESPECIALLY if it has been working but things are shrunk right down so you are now going to take a break. If you need chemo again, and the 5FU was working for you and didn't stop then more than likely an onc would say "Let's give it a try again"... and that would go for any chemo. Or, they might mix them up and instead of just giving you the one, will give it to you as a combo with another one.
In my case, the oxi was horrid and has done enough nerve damage (that is why I'm actually up at 1:22 PST... my feet and legs below the knees are burning up tonight... grrrr) that Sharlene (onc) told me she promises she would not give me oxi again. We did try the Xeloda but when that stopped working, highly unlikely she will say "Let's do the 5FU infusion". Soooo, onwards we go and this time we will be doing the Irinotecan by infusion... and will do it by itself for now. Which I suppose that might mean I will have different symptoms than others because others have either done the FOLFIRI, or Irinotecan/Avistan, or Irinotecan/Ertibux... a variety of different combos. If the Irinotecan doesn't produce good results on it's own, I think her next plan of attack will be the Irinotecan/Ertibux, but first I have to get that gene-mutant testing, which I think she is going to do on my next blood work.
As for the Kidney cancer... I am not concerned about that one at all. My kidney surgeon is very confident that this is a classic kidney tumour, in the classic shape (?) and that where it is situated it will be easy for them to go in and zap it. Once it's zapped, I can then say "I HAD kidney cancer, but it's all gone now"
So, our top priority right now is to, like you say, keep the beast on the RUN and let him know that we are bringing out the troops and don't NO BEAST cross my threshold, otherwise I will get really, really mad!!! And when I get mad... well, it won't be a pretty sight and the beast will be a tremblin' in it's boots
Cheryl0 -
Hey Lisa!lisa42 said:Hey Cheryl
Hi Cheryl,
I was sure hoping that those tumors of yours in the lungs would just continue to stay dormant! So sorry about the new primary cancer in the kidney. But, you've got a plan and your doctors seem to be on top of it all. So, that is good news- there is definitely still HOPE
You and I both have those nasty multiple tumors in the lungs. I could never get them to give me a number- I still don't know how many are there in my lungs.
Well, Folfiri isn't fun, but it is definitely easier than Folfox.
About the hair... well, you'll just have to wait and see. It falls out for some and not for others. My scalp definitely got all sore and tingly and I had several weeks of thinning hair- lots between my fingers when I washed my hair & lots in my brush. But, I never lost it and it didn't get so thin as people out and about would look at me and notice much. The people who knew me well could see my hair wasn't in as good of shape as it was, but that was about it- really. Then, it could go the other way- sure hope it stays in for you. But, it does grow back, as you know
Hugs to you, Cheryl- you can do this, lousy as it is, you can do this! You're one strong lady and I know you'll get the fight in you!
Hugs,
Lisa
Awwwwww... thanks, hon!! Yes, I've noticed that you and I have had very similar parts to our journeys... what with the lung tumours. And you know, it doesn't really matter if you have 3 tumours, 10 tumours, or 50 tumours... anything over 1 is considered to be multiple tumours and doctors like to talk in that kind of lingo. Oh, I'm sure if you only had 2 or 3 and they all were conveniently located in the same area then the recommendation would be to go in and either zap them with the RFA procedure (a non-invasive procedure which is preferable to surgery... but it really all depends on where they are located and whether the radiologist can get at them easily). But if you had 3 or 4 scattered between two lungs and in all different locations, then they would probably say that surgery is not an option, and they wouldn't want to do 4 separate RFA procedures. Most radiologists who do the RFA procedure will suggest, if there are "multiple" tumours to get them under control with chemo first... and then they can always go in and clean up the solitary ones. Of course, their big concern is that if there are multiple tumours, then there are others soon to sprout up... again, another reason for chemo to stop any new growth.
So, no more RFA in the lungs for me at this time. I do happen to know I have 11 tumours (very, very small... with the two largest ones being about 2mm) and you really don't have to worry about whether you have more or less... as long as they find a medication that will keep them stable. Like I say, my GP has a patient who has HUNDREDS of them, so many they can't keep count... and he's doing fine
Just out of curiosity, what side affects did you get on FOLFIRI, or is that the one with the 5FU, OXI and Irinotecan? If there was oxi, I totally know how NOT fun that would be... but luckily for me, I won't be going on that one. Hehe... even though walking is a challenge, I want to be able to walk somewhat and anymore Oxi, I think that would be the end of me being able to walk at all
I'm going on straight Irinotecan (unless between now and when I see my onc on Feb 4 she's changed her mind)
My plan for the next couple of days, before I get the port put in, is to do my laundry and mix the apartment up a little bit... so that I'm totally comfortable and not having to be thinking "Oh, I should have got that done!" If I DO find I am spending more time at home resting, or because of side affects on certain days... then I want the apartment to be set up for total enjoyment. Desk tidy, computer at the ready. A stash of Blu-Ray discs/movies that I've wanted to see but haven't gotten around to. The PVR set to record favourite television series (Glee, Modern Family, Human Target, and No Ordinary Family)... and then my total guilty pleasure (TMZ) . I figure, if I get all of this set up, ready for some "down time" at home... you KNOW it won't happen, I won't have side affects and I'll be out and about on a daily basis just as I always have been
Well, that's my plan
Cheryl0 -
Get them Cheryl!CherylHutch said:2-fer... I like that
Haha... I like that term, Kathi... when I think of 2-fer's I think in terms of tickets. Like a preview performance before an opening night quite often will be a 2-fer performance (2 tickets for the price of one). So yes, I guess I can say I belong to the 2-fer club... but I would just as soon say "thanks, but no thanks... I don't need to start collecting these puppies"
Oh, I'm sure there's no doubt that a chemo can be used more than just once... ESPECIALLY if it has been working but things are shrunk right down so you are now going to take a break. If you need chemo again, and the 5FU was working for you and didn't stop then more than likely an onc would say "Let's give it a try again"... and that would go for any chemo. Or, they might mix them up and instead of just giving you the one, will give it to you as a combo with another one.
In my case, the oxi was horrid and has done enough nerve damage (that is why I'm actually up at 1:22 PST... my feet and legs below the knees are burning up tonight... grrrr) that Sharlene (onc) told me she promises she would not give me oxi again. We did try the Xeloda but when that stopped working, highly unlikely she will say "Let's do the 5FU infusion". Soooo, onwards we go and this time we will be doing the Irinotecan by infusion... and will do it by itself for now. Which I suppose that might mean I will have different symptoms than others because others have either done the FOLFIRI, or Irinotecan/Avistan, or Irinotecan/Ertibux... a variety of different combos. If the Irinotecan doesn't produce good results on it's own, I think her next plan of attack will be the Irinotecan/Ertibux, but first I have to get that gene-mutant testing, which I think she is going to do on my next blood work.
As for the Kidney cancer... I am not concerned about that one at all. My kidney surgeon is very confident that this is a classic kidney tumour, in the classic shape (?) and that where it is situated it will be easy for them to go in and zap it. Once it's zapped, I can then say "I HAD kidney cancer, but it's all gone now"
So, our top priority right now is to, like you say, keep the beast on the RUN and let him know that we are bringing out the troops and don't NO BEAST cross my threshold, otherwise I will get really, really mad!!! And when I get mad... well, it won't be a pretty sight and the beast will be a tremblin' in it's boots
Cheryl
Thinking about you Cheryl and aending them good vibes way. Keep smiling and kick some Arse?!0 -
Hang there Cheryl ,you are a fighter, you canNana b said:Get them Cheryl!
Thinking about you Cheryl and aending them good vibes way. Keep smiling and kick some Arse?!
easily do irinotecan!,l pray for excellent results with the new treatment!.
Take Care of you!0 -
my dear friendpepebcn said:Hang there Cheryl ,you are a fighter, you can
easily do irinotecan!,l pray for excellent results with the new treatment!.
Take Care of you!
Cheryl you continue to amaze me. Your posts are always so thorough so thoughtful and so beautifully written....no computer..eeze with our girl....every i is dotted.
Like Lisa I was hoping your little dormant devils would just keep on sleeping. I cannot help on any front because I have never had a port or taken your chemo. I certainly can agree that oxy is a kicker and I am glad you are not doing that again.
A good friend of mine just lost her hair to carboplatin and taxol. She invested in a wig and drove to Toronto to attend one of the beauty seminars.....she found it really helpful and as Anne said she came home with a load of products for free.
I think getting the apartment in shape is a great idea....maybe get new flannelette sheets or a couple of new nightgowns or any little old thing to treat yourself....bath product....i don't know something that feels pampery when you are down with chemo. Do you have a friend who can bring your food shopping to you? stock up the freezer.....get a great whack of tacky mystery novels? I watched Sex and the City endlessly....haha good stuff.
I admire your spirit....just set the kidney aside for the moment and concentrate elsewhere....one cancer at a time. You have fight, style and grace.....I am proud to be your friend.....
with love and a hug....
mags0 -
Hi Cheryl:
Sorry for the late reply. George has had 2 infusions of Camposar also called CPT-11, same thing you are getting. He does get pre-meds of Anzamet for nausea, steroid Decadron and then the CPT-11. They warn about diarrhea (sp). Has not been a big problem. Doc will probably tell you to get some Immodium AD. Manufacturer said to take 2 but George found that to be too much. When he gets home, if he goes to the bathroom, he takes 1 and then no problem. He has never had urgent trips to the bathroom. George was kinda bald to start with but about 75% of what was there has fallen out. This happened about 10 days after first infusion. Nausea has not been a problem. Appetite is good. Decadron keeps him wired for a while, then he crashes with fatigue and sleeps. I think he has a bit more gas than usual but again, not a problem. He does get Avastin every, I think, 3rd infusion. His infusions are weekly so just when he feels good, time for chemo again.
Hope this helps.
Tina0 -
picturesgeotina said:Hi Cheryl:
Sorry for the late reply. George has had 2 infusions of Camposar also called CPT-11, same thing you are getting. He does get pre-meds of Anzamet for nausea, steroid Decadron and then the CPT-11. They warn about diarrhea (sp). Has not been a big problem. Doc will probably tell you to get some Immodium AD. Manufacturer said to take 2 but George found that to be too much. When he gets home, if he goes to the bathroom, he takes 1 and then no problem. He has never had urgent trips to the bathroom. George was kinda bald to start with but about 75% of what was there has fallen out. This happened about 10 days after first infusion. Nausea has not been a problem. Appetite is good. Decadron keeps him wired for a while, then he crashes with fatigue and sleeps. I think he has a bit more gas than usual but again, not a problem. He does get Avastin every, I think, 3rd infusion. His infusions are weekly so just when he feels good, time for chemo again.
Hope this helps.
Tina
ps. Cheryl you have always liked my little shed in the back yard....I just put up a couple of pics for you in the expressions gallery....this is my other little shed in the north woods.....maybe you can go there in your mind.....honestly....I have gone there for 6 years during the cancer battle and there is not one ONC on that little island....deer yes....docs and CT scans no....
hugs, mags0 -
Cherylmaglets said:pictures
ps. Cheryl you have always liked my little shed in the back yard....I just put up a couple of pics for you in the expressions gallery....this is my other little shed in the north woods.....maybe you can go there in your mind.....honestly....I have gone there for 6 years during the cancer battle and there is not one ONC on that little island....deer yes....docs and CT scans no....
hugs, mags
I hope things go well sending good vibes
michelle0 -
goodluck cheryl
sorry to hear about the lung mets and then the kidney.
you sound pretty well covered medically.
just hope your chemo cycles this round are kind to you!
cheers,
pete0
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