And the saga continues;
Tom was working down near the Cancer Treatment Center so I called and my records were ready so he picked them up for me and is bringing them home to me this evening.
The administrator of the Cancer Treatment Center called and said she had spoken to my Oncologist. He basically only heard me say that I had spoken to the company that makes the drug and was frustrated as "they don't always have to the up to date information on clinical trials"?????????
And also he has a patient, me, that is down to one option and its hard for a physician to know that. So I made nice nice, she made nice nice and I said I was still going for a second opinion but would be at the Cancer Center on July 19th maybe not for treatment but to discuss with my Oncologist what the other Oncologist said after my appointment (At this point I was lying through my teeth as I had no intention on ever going back to my Oncologist).
Twenty minutes ago my Oncologist called me and apologized and I apologized to him for being emotional. He went through my chart and determined when he stopped my Folfox-6 and Avastin treatment I was still responding well to it and my side effects or counts had not gotten too bad or intolerable in the case of the side effects so he wants to start me back on Folfox-6 on July 19th with Avastin. He did not say why he did not put me back on Folfox-6 and Avastin after giving me a rest with Avastin alone and instead put me on the Camptosar. I said that sounded fine and would be there on the 19th for treatment.
Now I am still going to the second opinion and depending on what that Oncologist says after reading my chart I am going to either change Oncologists or go back to the first one.
I need input on this as my emotions are all over the place and I am so confused right now. I feel like a battered wife and the husband woos her back saying "I'll never do it again" although it's not quite like that.
What do ya'll think? I am fine with doing the Folfox-6 with Avastin again and know the side effects and can deal with them again and having the pack again, I just don't know if I can take this Oncologists "NON bedside manner" as it were anymore.
Thank you in advance for any ideas, thoughts, suggestions, etc.
Wednesday, June 30, 2010
my talk with my oncologist
well he called back, the man berated me and told me I talked to people who were not medical professionals and did not know what they were talking about was sarcastic to me and told me that these people told me what they did because the did not have a vested interest in me and if complications happened they had no part of it. he said he had never had a patient act as I have done and made me feel like a total child. I ended up sobbing and telling him "fine i will be in on the 19th of the treatment that won't work" when I calmed down I called back and left a message for his assistant to have my chart ready for me to pick up tomorrow as I was getting that second opinion (oh he was mad at me also for sayiing I was getting a second opinion) so on the 12th my appoinment is confirmed with another oncologist and I will drop my records off before hand so the oncologist can familiarize himself with my case. also I called back to the cancer treatment center where my oncologist is and left a message for the administrator telling her how he had treated me over the phone, I will call her later if she does not call me back. i am extremely upset over his "I am god almighty and you were bad by doing research and all the people you talked about do not know what they were saying and you have acted as a child" attitude. oh and by the way, no he had no good calm decisive answer as to why he chose the vectibix when he knew I had the KRAS mutation, just "he" ascertains it will help and then instead of the kind Dr. yesterday that said we would try vectibix for three months and then if it worked continue it and if it didn't then we would try unconventional therapies i.e, clinical trials, using chemotherapies for other cancers no he told me flat out vecibix is your last and only option there are no clinical trials and you have no other choices. I was hysterical when i hung up with him and am still so upset i am shaking. will write more later. oh and he will "get back" to me AFTER my vacation on why he took me off folfox-6 and if it is viable to put me back on it.
The fight has begun in earnest
I am getting a lot of return phone calls for clinical trials and also one is from an Oncology group close to where I live. There are not many clinical trials where I live and I cannot travel to others so far there are 2. However I have a "tentative" (The woman I spoke with does not make the appointments, they have to call me back) appointment for the 12th to go in and see a new Oncologist at the Oncology group for a second opinion and if I like them I will transfer over to them as I have lost all faith in my Oncologist as of right now (He still has not contacted me) because of the general lack of interest and many changes he has blindsided me with over the time I have been with him and now this Vectibix fiasco (No less than 5 oncology professionals and researchers have confirmed with the mutant KRAS there is no benefit to doing Vectibix as it simply will not work)
I just called my Oncologists office for the fourth time but this time asked them to print out or copy my chart and let me know if I need to come pick it up or have it faxed.
So when they call back will update. Tom is pretty much acting like I have gone off the deep end, he is defending my Oncologist and saying maybe I don't have the mutant kind of KRAS but the other but dammit I HEARD the Dr. stay what kind I had. And he is making excuses for the Oncologist and I am sorry this is "MY" life and I am now fighting for it, and I don't do things half butted, when I put my mind to it I am all in so I am calling my fricking Oncologist every other hour today until I get through to him or he returns my calls as I want answers!
Total hysterectomy July 23 2008, mass in colon.
Colonoscopy Aug 2008
Rigid Sigmoidoscopy with a laparoscopic-assisted partial colectemy with enbloc small bowel resection Sep 2008
Diagnosed: Stage IV Colon Cancer mets to lungs and liver. (T3,N2,M1,G2) KRAS Mutation
Started chemotherapy: 09/14/09 Folfox-6 with Avastin then Avastin alone.
Next treatment 07/19/10 Vectibix ~ Next PET scan: Sep/Oct (Actually I don't know when or what my next treatment will be at this point)
Most recent CEA Level: 05/24/10: 138.5 up from 05/10/10: 67 (As usual my Oncologist did not order a CEA level for my last visit on the 14th of June so I have no idea right now what my CEA level is)
I just called my Oncologists office for the fourth time but this time asked them to print out or copy my chart and let me know if I need to come pick it up or have it faxed.
So when they call back will update. Tom is pretty much acting like I have gone off the deep end, he is defending my Oncologist and saying maybe I don't have the mutant kind of KRAS but the other but dammit I HEARD the Dr. stay what kind I had. And he is making excuses for the Oncologist and I am sorry this is "MY" life and I am now fighting for it, and I don't do things half butted, when I put my mind to it I am all in so I am calling my fricking Oncologist every other hour today until I get through to him or he returns my calls as I want answers!
Total hysterectomy July 23 2008, mass in colon.
Colonoscopy Aug 2008
Rigid Sigmoidoscopy with a laparoscopic-assisted partial colectemy with enbloc small bowel resection Sep 2008
Diagnosed: Stage IV Colon Cancer mets to lungs and liver. (T3,N2,M1,G2) KRAS Mutation
Started chemotherapy: 09/14/09 Folfox-6 with Avastin then Avastin alone.
Next treatment 07/19/10 Vectibix ~ Next PET scan: Sep/Oct (Actually I don't know when or what my next treatment will be at this point)
Most recent CEA Level: 05/24/10: 138.5 up from 05/10/10: 67 (As usual my Oncologist did not order a CEA level for my last visit on the 14th of June so I have no idea right now what my CEA level is)
Tuesday, June 29, 2010
Clinical trials my only shot left?
Thank you for your words, you have no idea how much they mean to me. Yes I ate and calmed down. I am going to wait to talk to my Oncologist and see what he has to say, "IF" he has a viable reason for my doing the victibix I will do it. However I truly think he forgot I had the KRAS mutation although I do hope I am wrong. While I was doing the research this was the ONE time in my life I prayed I was wrong but all the information is up to date and says that one of the factors that may influence response to Vectibix is the activity of a gene known as KRAS. Cancers that contain mutated forms of the KRAS gene will not respond to anti-EGFR treatments such as Vectibix. But again perhaps my Oncologist knows something else so will wait to hear from him.
I just know I am not walking into the cancer treatment center on July 19th without an answer to this. From what I have read on the website of Amgen (They make Victibix) and other websites, and what my Oncologist told me and if I remember right seen on this forum from others the major side effect is rash, acne, fissures in the skin that are disfiguring for a time and painful, and I just won't put myself through that for a drug that does not work with my body makeup.
My Oncologist also said he was going to research if Victibix can be used with Avastin, it took me two minutes literally on here to see that it cannot be used without the toxicity increasing and they do not recommend it.
For a bit of good news I did talk to the American Cancer Society and the National Cancer Society about something my Oncologist said about researching chemotherapies used for other cancers (breast, uterine, prostrate, pancreatic, lung, etc) to see if any would work for me. The Societies could not tell me of any that would but did tell me that Dr's do this all the time even without FDA approval for the secondary use of that chemotherapy so perhaps he can find something there for me.
I am right now at this time checking for clinic trials in my area and applying online to those I can. So far it totals, 1 and I don't think I am a candidate but will keep pluggin away tonight until Tom comes home from work.
Tom is so calm in all of this and keeps telling me even if there are no options left I won't go downhill right away and pass away, it might take years. I am trying to be brave and strong but I truly did not think we would hit the end of my chemotherapy options in only nine months.
I just know I am not walking into the cancer treatment center on July 19th without an answer to this. From what I have read on the website of Amgen (They make Victibix) and other websites, and what my Oncologist told me and if I remember right seen on this forum from others the major side effect is rash, acne, fissures in the skin that are disfiguring for a time and painful, and I just won't put myself through that for a drug that does not work with my body makeup.
My Oncologist also said he was going to research if Victibix can be used with Avastin, it took me two minutes literally on here to see that it cannot be used without the toxicity increasing and they do not recommend it.
For a bit of good news I did talk to the American Cancer Society and the National Cancer Society about something my Oncologist said about researching chemotherapies used for other cancers (breast, uterine, prostrate, pancreatic, lung, etc) to see if any would work for me. The Societies could not tell me of any that would but did tell me that Dr's do this all the time even without FDA approval for the secondary use of that chemotherapy so perhaps he can find something there for me.
I am right now at this time checking for clinic trials in my area and applying online to those I can. So far it totals, 1 and I don't think I am a candidate but will keep pluggin away tonight until Tom comes home from work.
Tom is so calm in all of this and keeps telling me even if there are no options left I won't go downhill right away and pass away, it might take years. I am trying to be brave and strong but I truly did not think we would hit the end of my chemotherapy options in only nine months.
What "worse" means and my options
Okay I am back and here's the run down (These are the questions I asked my Oncologist)
1. How much "worse" is it?
The PET scan showed new cancer cells in both lungs and liver, "many" (no exact number given), still small but growing, these along with the ones that were there before.
2. What do you recommend now and why?
Starting the 19th of July we will start me on a drug called which is Vectibix is a cancer medication. It interferes with the growth of cancer cells by binding to a protein found on cancer cells which slows their growth and spread. This is not a chemotherapy. He wants to use this as it is the only conventional treatment left for me. It also has a nasty side effect of skin eruptions, rashes, fissures in the skin etc. etc. I will be on this every two weeks for three months then do another PET scan to see if it works, if it does we continue it, if not we try unconventional therapies (Clinical trials basically)
3. Surgery to resection liver and lungs any possiblity?
He said no as there are too many cancer cells in liver and lungs.
4. Radiation therapy a possibility?
He hemmed and hawed and finally said maybe but it was a reluctant maybe.
5. Ablation or cryogenic surgery a possiblity?
No as again there are too many cancer cells in liver and lungs.
6. Hepatic chemoembololization with radiation therapy a possibility?
He said probably not.
7. Chemo bath? (He's said no before but hey LOL)
He said no as they can only use that for the liver, the lungs would be getting no treatment.
8. Is the cancer in the liver causing my back pains and can we work on that? (Re's REB's problem)
He said is doubtful as there are not that many cancer cells to be causing the pain (Ummmm there are enough to make resection or surgery not a possiblity but not enough to be causing the back pain???? HUH?)
9. I am not going to die today, tomorrow, next week, next month, probably not this year or maybe not next year from this disease even if we stop treatment. But it will come. He again reiterated we have to treat this as a chronic disease such as heart disease or diabetes, bu from what he said, we are down to the last conventional option and there are not that many "non-conventional" (Clinical trials, using chemotherapy used for breast cancer or pancreatic cancer, etc) that I can see we can be hopeful for.
One last thing, I immediately went on line to check Vectibix and found this:
Vectibix is an epidermal growth factor receptor antagonist indicated as a single agent for the treatment of metastatic colorectal carcinoma with disease progression on or following fluoropyrimidine, oxaliplatin, and
irinotecan chemotherapy regimens. Approval is based on progression free survival; no data demonstrate an improvement in disease-related symptoms or increased survival with Vectibix.
• Retrospective subset analyses of metastatic colorectal cancer trials have not shown a treatment benefit for Vectibix in patients whose tumors had KRAS mutations in codon 12 or 13. Use of Vectibix is not
recommended for the treatment of colorectal cancer with these mutations.
05/2010 Amgen.com
I have the KRAS mutation but have no clue about this codon 12 or 13 so put in a call to my Oncologist to ask about it, no call back yet.
Thank you all for your prayers, thoughts and advice and if anyone can tell me anything about Vectibix I need to know about please do so.
1. How much "worse" is it?
The PET scan showed new cancer cells in both lungs and liver, "many" (no exact number given), still small but growing, these along with the ones that were there before.
2. What do you recommend now and why?
Starting the 19th of July we will start me on a drug called which is Vectibix is a cancer medication. It interferes with the growth of cancer cells by binding to a protein found on cancer cells which slows their growth and spread. This is not a chemotherapy. He wants to use this as it is the only conventional treatment left for me. It also has a nasty side effect of skin eruptions, rashes, fissures in the skin etc. etc. I will be on this every two weeks for three months then do another PET scan to see if it works, if it does we continue it, if not we try unconventional therapies (Clinical trials basically)
3. Surgery to resection liver and lungs any possiblity?
He said no as there are too many cancer cells in liver and lungs.
4. Radiation therapy a possibility?
He hemmed and hawed and finally said maybe but it was a reluctant maybe.
5. Ablation or cryogenic surgery a possiblity?
No as again there are too many cancer cells in liver and lungs.
6. Hepatic chemoembololization with radiation therapy a possibility?
He said probably not.
7. Chemo bath? (He's said no before but hey LOL)
He said no as they can only use that for the liver, the lungs would be getting no treatment.
8. Is the cancer in the liver causing my back pains and can we work on that? (Re's REB's problem)
He said is doubtful as there are not that many cancer cells to be causing the pain (Ummmm there are enough to make resection or surgery not a possiblity but not enough to be causing the back pain???? HUH?)
9. I am not going to die today, tomorrow, next week, next month, probably not this year or maybe not next year from this disease even if we stop treatment. But it will come. He again reiterated we have to treat this as a chronic disease such as heart disease or diabetes, bu from what he said, we are down to the last conventional option and there are not that many "non-conventional" (Clinical trials, using chemotherapy used for breast cancer or pancreatic cancer, etc) that I can see we can be hopeful for.
One last thing, I immediately went on line to check Vectibix and found this:
Vectibix is an epidermal growth factor receptor antagonist indicated as a single agent for the treatment of metastatic colorectal carcinoma with disease progression on or following fluoropyrimidine, oxaliplatin, and
irinotecan chemotherapy regimens. Approval is based on progression free survival; no data demonstrate an improvement in disease-related symptoms or increased survival with Vectibix.
• Retrospective subset analyses of metastatic colorectal cancer trials have not shown a treatment benefit for Vectibix in patients whose tumors had KRAS mutations in codon 12 or 13. Use of Vectibix is not
recommended for the treatment of colorectal cancer with these mutations.
05/2010 Amgen.com
I have the KRAS mutation but have no clue about this codon 12 or 13 so put in a call to my Oncologist to ask about it, no call back yet.
Thank you all for your prayers, thoughts and advice and if anyone can tell me anything about Vectibix I need to know about please do so.
Monday, June 28, 2010
Scared
My Oncologist called today and it was not good news. The PET scan came back "worse". His exact words. So I have an appointment tomorrow at 10:30am to go in and see him and "discuss options". Again his words. which I don't have many of, I am going to ask him about ablation surgery, about radiation therapy but I don't think he is going to agree these are viable options and with me having the KRAS mutation my lines of defense as far as chemotherapy are limited and I have already gone through two different chemotherapy options already.
Almost two years ago I found out I had this cancer, I knew the odds and did not do chemotherapy as I was resigned to the odds. Then I met my Tom, my greatest and last love of my life and eventually we decided to have me do chemotherapy, that was September of 2009.
It has been hard, the side effects alone have made me many times "almost" give up but I have not, I have held on for my Tom. Now I am afraid of what the Oncologist will say tomorrow, I am afraid he will say there are no more options and all we can do is keep me comfortable, I am so afraid, please pray for me this day and night and tomorrow, please. I will update tomorrow.
Almost two years ago I found out I had this cancer, I knew the odds and did not do chemotherapy as I was resigned to the odds. Then I met my Tom, my greatest and last love of my life and eventually we decided to have me do chemotherapy, that was September of 2009.
It has been hard, the side effects alone have made me many times "almost" give up but I have not, I have held on for my Tom. Now I am afraid of what the Oncologist will say tomorrow, I am afraid he will say there are no more options and all we can do is keep me comfortable, I am so afraid, please pray for me this day and night and tomorrow, please. I will update tomorrow.
Friday, June 25, 2010
Disapointed
Well I "reminded" Tom to get the reservations today done for the river raft trip and the horseback/jeep ride/dinner and show but as usual well anyways just had to remind him to do it again (And "I" am the one with chemo brain????? LOL). And yes I will take loads of pictures.
I am a bit upset today as I called the cancer center and left a message for my Oncologists PA. Her assistant called me back and A. No CEA level was done with my labs on the 14th so therefore no CEA level results. The PA was very upset and put in my chart that there are always CEA levels to be done as with me they are perfect indicators of how I am doing with the cancer and chemo. and B. The results for the PET are not up yet but as soon as they Kristin will call me to discuss them. Her Assistant will check throughout the day but for some reason I get the feeling I will not get a call today so as of right now I am out there in no man's land with everyone else waiting on test results and won't know a CEA level till a week after the 19th of July (shrugs)
Good thing I had my melt down yesterday. (Tom actually had to come home from work, won't go into it all here but I stumbled over the strip he had on the floor of our bedroom in the doorway and fell, hitting my head on a floor cabinet and pulling all the wires (about 25 I kid you not) from the computer and monitor (which we use as a TV) and modem and this and that and the other. This as I tried to clean the house after getting upset over the state of it again (I know I need to stop obsessing about the house cleaning but there's only so much I can take) and then tried to get all the wires back in the plugs and just well sat down and cried. Then went next door and the neighbor came and helped me get everything back together and the TV and internet working.
Then Tom comes home and after calming me down and making sure I was okay we watched some TV and he cleaned the floors. I then was wiping down the top of the dishwasher and a sliver of metal slid into the flesh under my fingernail. So I think I need to just wrap myself in bubble wrap before I really hurt myself LOL.
Have a great and wonderful day everyone, Tom's watching Glenn Beck he recorded so I guess I have to pull up the websites for the things we want to do on vacation and shove them in front of him to get him to use his credit card to reserve them.
EDITED TO ADD: it's now 5:31pm PST where I am and no call about my PET scans, now I am starting to worry, now the doubts creep in "What if it's so bad they have to wait till Monday when my Oncologist comes in so they can call me and give me an appointment to talk to him so he can tell me in person?" I hate this waiting crap!
I am a bit upset today as I called the cancer center and left a message for my Oncologists PA. Her assistant called me back and A. No CEA level was done with my labs on the 14th so therefore no CEA level results. The PA was very upset and put in my chart that there are always CEA levels to be done as with me they are perfect indicators of how I am doing with the cancer and chemo. and B. The results for the PET are not up yet but as soon as they Kristin will call me to discuss them. Her Assistant will check throughout the day but for some reason I get the feeling I will not get a call today so as of right now I am out there in no man's land with everyone else waiting on test results and won't know a CEA level till a week after the 19th of July (shrugs)
Good thing I had my melt down yesterday. (Tom actually had to come home from work, won't go into it all here but I stumbled over the strip he had on the floor of our bedroom in the doorway and fell, hitting my head on a floor cabinet and pulling all the wires (about 25 I kid you not) from the computer and monitor (which we use as a TV) and modem and this and that and the other. This as I tried to clean the house after getting upset over the state of it again (I know I need to stop obsessing about the house cleaning but there's only so much I can take) and then tried to get all the wires back in the plugs and just well sat down and cried. Then went next door and the neighbor came and helped me get everything back together and the TV and internet working.
Then Tom comes home and after calming me down and making sure I was okay we watched some TV and he cleaned the floors. I then was wiping down the top of the dishwasher and a sliver of metal slid into the flesh under my fingernail. So I think I need to just wrap myself in bubble wrap before I really hurt myself LOL.
Have a great and wonderful day everyone, Tom's watching Glenn Beck he recorded so I guess I have to pull up the websites for the things we want to do on vacation and shove them in front of him to get him to use his credit card to reserve them.
EDITED TO ADD: it's now 5:31pm PST where I am and no call about my PET scans, now I am starting to worry, now the doubts creep in "What if it's so bad they have to wait till Monday when my Oncologist comes in so they can call me and give me an appointment to talk to him so he can tell me in person?" I hate this waiting crap!
Tuesday, June 22, 2010
Feeling better, PET scan and questions about activities for vacation answered
You guys (guys meaning guys literally and gals too (grin) are just so super. You help me to know I can go on and you give me advice and let me have a pity party to a point then pull me out of it (Grins) I am feeling better, the past two days were Tom's day off so we just spent the time in bed watching TV and DVD's, Tom went for take out (I know not nutritious but he would rather do that than cook although he can cook (grins).
So, today I went for my PET scan and called my Oncologists office, his PA Kristen returned my call and since my next appointment is July 19th she said to keep that appointment (with the chemo and blood work) but call her this Friday and she'll go over the results of the PET with me (My Oncologist now works only Mon-Thurs so won't be there Friday).
I also called my surgeon and she said they are not worried about me doing any activities on my vacation and yes I outlined them all, she said they should all be okay, BUT what I cannot do is lift anything over 25 pounds, do sit ups (yeah right LOL) or things like that. She also said when the hernia gets hard like it did those two days I had pain? to massage it and try to get it to work back in. She "advises" a truss so I guess I will call her again and ask her if she can phone in a prescription for one so I won't have to pay the whole cost. We shall see about that though as I don't have any money left from my disability and Tom is tapped out with the vacation and buying groceries today.
So, Friday we call and finalize the activities part of our vacation as we have to wait for Tom's check to get in the bank but we have the hotel and the car reserved.
We went grocery shopping as I mentioned after the PET scan (Tom sat in with me on the PET scan as I do get claustrophobic) and I was okay until we got home and I started putting things away. It was like I lost coordination and was dropping things. I dropped a big can of canned fruite on my foot and had to sit down and cry for awhile, nothing broken but going to have a bruise. Getting lots of advise from neighbors here on how to stay cool during vacation and now I am off to answer private messages.
Again thank you all for your support and help and you are all in my thoughts and prayers and I will let ya'll know what the PA says on Friday about the PET scan. For some reasons I don't worry about the PET scans too much, I already know how my CEA level is and because it's such a good indicator for me I "think" I know how my PET scan will be but please add me to prayers and thoughts anyways. (((((((((((hugs))))))))
So, today I went for my PET scan and called my Oncologists office, his PA Kristen returned my call and since my next appointment is July 19th she said to keep that appointment (with the chemo and blood work) but call her this Friday and she'll go over the results of the PET with me (My Oncologist now works only Mon-Thurs so won't be there Friday).
I also called my surgeon and she said they are not worried about me doing any activities on my vacation and yes I outlined them all, she said they should all be okay, BUT what I cannot do is lift anything over 25 pounds, do sit ups (yeah right LOL) or things like that. She also said when the hernia gets hard like it did those two days I had pain? to massage it and try to get it to work back in. She "advises" a truss so I guess I will call her again and ask her if she can phone in a prescription for one so I won't have to pay the whole cost. We shall see about that though as I don't have any money left from my disability and Tom is tapped out with the vacation and buying groceries today.
So, Friday we call and finalize the activities part of our vacation as we have to wait for Tom's check to get in the bank but we have the hotel and the car reserved.
We went grocery shopping as I mentioned after the PET scan (Tom sat in with me on the PET scan as I do get claustrophobic) and I was okay until we got home and I started putting things away. It was like I lost coordination and was dropping things. I dropped a big can of canned fruite on my foot and had to sit down and cry for awhile, nothing broken but going to have a bruise. Getting lots of advise from neighbors here on how to stay cool during vacation and now I am off to answer private messages.
Again thank you all for your support and help and you are all in my thoughts and prayers and I will let ya'll know what the PA says on Friday about the PET scan. For some reasons I don't worry about the PET scans too much, I already know how my CEA level is and because it's such a good indicator for me I "think" I know how my PET scan will be but please add me to prayers and thoughts anyways. (((((((((((hugs))))))))
Friday, June 18, 2010
Getting worse
I am at the point right now I would sell my first born son (we don't get along anyways and NO I don't really mean about the selling part, just illustrating how bad I feel) to never have to go through chemotherapy again. I am so tired, so physically and mentally exhausted and my head hurts, I am nauseous, gave my own self diarrhea with taking a laxative cause I haven't pooped in two days and have been taking Vicodin for the pain of my hernia. And the mouth sores are back.
I keep telling myself I won't just quit because God only knows how fast I might go down hill but I am today, just for today at the end of my rope and crying constantly. I look like a nightmare from what I used to look like, my hair has grown in slow and patchy, I look like Jim Carey's character what was it fireman Bill or something from the Wayon Brothers show? and I am huge! I am not only gaining MORE weight but one side of my stomach sticks out because of the hernia and I look like a side show freak.
I keep crying for my mother (deceased since I was 18) and saying I want to go home. THIS with Tom is my home, what do I mean, do I want to die? I don't think so but the hernia is hurting almost all the time now, not in a OMG call the ambulance or take me to the ER way but in a I can't get up or down or sit or stand or turn or pick up or move or twist without crying, once I get settled I am fine until I have to move again.
So for today I want to quit chemo, just for today.
I keep telling myself I won't just quit because God only knows how fast I might go down hill but I am today, just for today at the end of my rope and crying constantly. I look like a nightmare from what I used to look like, my hair has grown in slow and patchy, I look like Jim Carey's character what was it fireman Bill or something from the Wayon Brothers show? and I am huge! I am not only gaining MORE weight but one side of my stomach sticks out because of the hernia and I look like a side show freak.
I keep crying for my mother (deceased since I was 18) and saying I want to go home. THIS with Tom is my home, what do I mean, do I want to die? I don't think so but the hernia is hurting almost all the time now, not in a OMG call the ambulance or take me to the ER way but in a I can't get up or down or sit or stand or turn or pick up or move or twist without crying, once I get settled I am fine until I have to move again.
So for today I want to quit chemo, just for today.
Tuesday, June 15, 2010
Nausea already
Yep got my last chemotherapy tomorrow until July 19th after we come back from our Grand Canyon vacation. Hello, Good morning/afternoon/evening/night (depending on where you are in the world) and may I say I feel like crap so will be posting more later on as the nausea eases (((((((((((hugs))))))))))) to everyone.
Okay so it's three days later and I still feel like crap. Mostly nausea but also my hernia has kicked up the past couple of days and made any movement in standing, sitting, walking, laying down, turning over excruciating. The thing is it's not "bad" enough to go to the hospital for but bad enough to make me miserable and keep me on pain pills or in tears.
Also because of the pain pills (Vicodin) there is no diarrhea from the chemotherapy which should be a good thing but I have gone through other spectrum where I cannot go and that scares me so bad I'd rather have diarrhea.
It's been two days since my last BM so I took a dulcolax, just one today with a full glass of water and will see how that works, if by tonight nothing happens I will take another one. Tom did the laundry today and just came up with the last load to put away so am going to try to help him (Thank God for my wonderful Man)
Will post more later .........
Okay so it's three days later and I still feel like crap. Mostly nausea but also my hernia has kicked up the past couple of days and made any movement in standing, sitting, walking, laying down, turning over excruciating. The thing is it's not "bad" enough to go to the hospital for but bad enough to make me miserable and keep me on pain pills or in tears.
Also because of the pain pills (Vicodin) there is no diarrhea from the chemotherapy which should be a good thing but I have gone through other spectrum where I cannot go and that scares me so bad I'd rather have diarrhea.
It's been two days since my last BM so I took a dulcolax, just one today with a full glass of water and will see how that works, if by tonight nothing happens I will take another one. Tom did the laundry today and just came up with the last load to put away so am going to try to help him (Thank God for my wonderful Man)
Will post more later .........
Monday, June 7, 2010
Not a happy time for me.
I am forgetting things and getting frustrated with myself and with Tom. I burnt my hand the other night. Tom wasn't home and I wanted to cook some meat I had a taste for. I turned the electric burner on, set the pan on it and put butter in it. I then noticed the pan was sitting crooked on the burned and what do I do, I forget the burner is on and take the pan off it and with my left bare hand grab the coils to straighten it. Not as bad as it could be but my middle finger, pointer finger and thumb got burned, white flesh and a bit of blistering I was in agony. Kept my hand in a bowl of ice water until Tom got home from work (3 hours) and brought home the only thing he could find neosporine with pain relief.
Then this morning I made breakfast; eggs each, over easy (I cheat and do it the easy way by putting the lid over it), microwave bacon and toast, in between making sure nothing burns I am throwing away egg shells, getting Tom his juice, setting up the trays on the bed, getting the sliverware on the trays, making sure nothing burns, buttering the toast, cleaning up after myself as I go and I have Tom's plate ready for the eggs; his toast got done first (2 slice toaster) I always do his plate first, put the bacon on it and went to put his three eggs on the plate and they slipped and fell on the floor. So I gave him the other three eggs.
He ate eggs over easy with buttered toast and bacon and I ate bacon and toast after I cleaned up the mess.
I don't want to cook or clean or do anything but stay in bed and cry for fear I will hurt myself or screw up a meal but does Tom offer to help?
Leaves that one alone as he did put up the ceiling fan yesterday. So today is his last day off before work so will not be online after this but will post to the forum tomorrow. I am hoping everyone is well and keep you all in my thoughts and prayers.
Then this morning I made breakfast; eggs each, over easy (I cheat and do it the easy way by putting the lid over it), microwave bacon and toast, in between making sure nothing burns I am throwing away egg shells, getting Tom his juice, setting up the trays on the bed, getting the sliverware on the trays, making sure nothing burns, buttering the toast, cleaning up after myself as I go and I have Tom's plate ready for the eggs; his toast got done first (2 slice toaster) I always do his plate first, put the bacon on it and went to put his three eggs on the plate and they slipped and fell on the floor. So I gave him the other three eggs.
He ate eggs over easy with buttered toast and bacon and I ate bacon and toast after I cleaned up the mess.
I don't want to cook or clean or do anything but stay in bed and cry for fear I will hurt myself or screw up a meal but does Tom offer to help?
Leaves that one alone as he did put up the ceiling fan yesterday. So today is his last day off before work so will not be online after this but will post to the forum tomorrow. I am hoping everyone is well and keep you all in my thoughts and prayers.
Thursday, June 3, 2010
Sore mouth, another side effect from chemotherapy
I have googled this, I have called my Oncologist (the on call Oncologist called me back) and I still don't have a good (for me) answer. I know what to do for mouth sores, I don't know what to do when my whole lower gum and teeth hurt and I mean have me crying. It's not a toothache or gum disease it's like one big mouth sore but not really a sore, just inflammed and HURTS. The oncologist said take 2 vicodin every four hours and use the warm salt water rinse I have been using.
That's all well and good but I don't want to be knocked out or dozing 18 hours out of 24 and it's not doing anything to treat the reason for the soreness and inflamation only treating the pain. The on call oncologist did say that my regular oncologist may have to cut back on the chemotherapy as the chemotherapy itself may be causeing this new side effect (Duh, ya think?)
So anyone have A. Any thoughts on what I should ask my Oncologist for to treat this when I call him tomorrow and B. Any other remedies other than the warm salt water that might help soothe this?
To those from the Colon Cancer Forum, Thank you all for your help. My Oncologists Assistant is phoning in a prescription for the Magic Mouthwash and also is going to try to get me a gel of some sort (I already forgot the name darn it) that she says also works well. I'll post the name when I get it although sometimes insurances don't cover it and it's kind of expensive so we might have to do some finagling to get it covered if possible. So tomorrow Tom and I will go pick up my prescription(s) He already left for work when she called back and so it has to wait, so more vicodin every 4 hours today and warm salt water swishing.
Well I got both prescriptions; one is a mouthwash and the only thing it says is: Lidocaine/Diphenhis/Maalox Su I swish this a teaspoon of this through my mouth 3-4 times a day and it does numb my mouth a bit but does not have the ucky taste of stuff like ambesol and does seem to be working.
The other is Caphosol (Eusapharma) which is a mouth rinse designed to moisten, lubricate and clean the oral cavity including the mucosa of the mouth, tongue and oropharynx which has been shown to prevent and treat oral mucositis in patients receiving radiation therapy or chemotherapy in the treatment of cancer. It comes in clear and blue capsules which I have to mix in a clean glass, swish half in my mouth for 30 second, spit it out then do the same with the rest.
So we shall see how it works in the long run but right now seems to be helping.
That's all well and good but I don't want to be knocked out or dozing 18 hours out of 24 and it's not doing anything to treat the reason for the soreness and inflamation only treating the pain. The on call oncologist did say that my regular oncologist may have to cut back on the chemotherapy as the chemotherapy itself may be causeing this new side effect (Duh, ya think?)
So anyone have A. Any thoughts on what I should ask my Oncologist for to treat this when I call him tomorrow and B. Any other remedies other than the warm salt water that might help soothe this?
To those from the Colon Cancer Forum, Thank you all for your help. My Oncologists Assistant is phoning in a prescription for the Magic Mouthwash and also is going to try to get me a gel of some sort (I already forgot the name darn it) that she says also works well. I'll post the name when I get it although sometimes insurances don't cover it and it's kind of expensive so we might have to do some finagling to get it covered if possible. So tomorrow Tom and I will go pick up my prescription(s) He already left for work when she called back and so it has to wait, so more vicodin every 4 hours today and warm salt water swishing.
Well I got both prescriptions; one is a mouthwash and the only thing it says is: Lidocaine/Diphenhis/Maalox Su I swish this a teaspoon of this through my mouth 3-4 times a day and it does numb my mouth a bit but does not have the ucky taste of stuff like ambesol and does seem to be working.
The other is Caphosol (Eusapharma) which is a mouth rinse designed to moisten, lubricate and clean the oral cavity including the mucosa of the mouth, tongue and oropharynx which has been shown to prevent and treat oral mucositis in patients receiving radiation therapy or chemotherapy in the treatment of cancer. It comes in clear and blue capsules which I have to mix in a clean glass, swish half in my mouth for 30 second, spit it out then do the same with the rest.
So we shall see how it works in the long run but right now seems to be helping.
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