Oncologist's Visit Today

First and foremost the tests:


PET/CT scan revealed that my liver lesions are the same as before 6 out of 12 gone, the other remaining are (I can't remember the exact wording and I didn't write it down dammit) stagnant for lack of the correct wording.

My lung lesions are a different matter, they are growing not in number but in size and seem to have become resistant to the chemotherapy I was on so starting next Monday and then every two weeks I go in for Camptosar (Generic name: Irinotecan)  along with Avastin. He is not putting me back on Folxfox-6 regimen with Avastin as Comptosar is indicated for the treatment of patients with metastatic carcinoma of the colon or rectum whose disease has recurred or progressed following 5-FU-based therapy ~ Which mine is progressing. so it wouldn't do any good to put me back on the Folfox-6 regimen I guess.

So. I looked up Camptosar and the major side effect I seem to be facing is severe diarrhea, with some nausea and vomiting, perhaps hair loss and they will have to monitor my blood count closely as it effects the bone marrow.

In three months I will have another PET SCAN.

If anyone has had treatment with Camptosar(Iriniotecan) please let me know what exactly to expect as far as side effects if you would and thank you.

So that's the PET/CT scan results and plan.

The MRI was done for my back pain, the MRI showed I have a bulging disc (He didn't say which one) my Oncologist is referring me to a Doctor (can't remember the specialty name right now) who is going to give me a steroid and epidural shot under X-Ray and see how it goes, if no more pain, no more treatments, if pain comes back then we see if more shots will help or what.

Also my Oncologist told me to diet so tomorrow I start. 5'3 1/2 and 242, yeah I guess I should lose some weight since as he says I am not dying anytime soon (I really want to believe that). I have been having more pains in my stomach when I twist or move sometimes or even laying still in bed I am sure and he is also comes from the hernia so we are going to try weight loss to help both the hernia and maybe my back a bit.

Didn't bring up the sex issue as I think Tom and I have resolved that. But did bring up depression and anxiety, my Oncologist got a bit nervous and does not feel comfortable going beyond Valium without referring me to a Psychiatrist. I really don't want to spend all of Tom's time off running around to more Dr's so as long as my Oncologist or his PA will give me Valium I will be fine I think.

No anemia, my blood work is fine right now so I guess the being cold all the time is just a thing my body is doing to me right now, he said not to worry. So next Monday I go in for my blood draw and treatment and will find out my CEA level from today.

Will do some more research on the new treatment but again if anyone has any experience with this please let me know oh and also if anyone has had the epidural shot for a back problem let me know about it, I remember having an epidural shot for my hysterectomy, colectomy, etc and for 36 hours no fricking pain, I loved it, Tom's (separated) wife gets these and he says they can last for months or forever They give the first shot to see how I react then gauge if I need more and how often.

(I have to admit I am a bit scared that the lesions in my lungs proved resistant so fast and of this new treatment but will be hopeful)

So... Will post next on Monday 02/22/10

I have had my PET/CT scan (This past Tuesday) and had my MRI (This past Thursday) and called Amy at my Oncologist's office so I have an appointment to see my Oncologist on Monday 02/22/10 and we shall see what he has to say about the scans, about my CEA level going up, I am going to ask him for some advice on the physical relationship things between Tom and I and also after what happened in my bath last night going to ask him about that also.

Remember I noticed one side of my abdomen was higher and harder than the other and asked my Oncologist about it and he said it was a hernia and said nothing else, well last night I was in the bath and turned and my lord! I had to sit and pant for about 5 minutes until the pain stopped, it was like a giant cramp and it hurt! and then it happened again about 15 minutes later.  Not happy about that so writing it down to ask the Dr. about it.

Have a great and wonderful weekend everyone.

My answer from the Colon Cancer Forum

Thank you all for your help and responses. Today I am a bit better, still kinda angry and depressed, but getting better. Going to ask my Oncologist for something for the depression and maybe Xanax or Ativan instead of Valium.


Tom and I talked a bit and he said he wants me to do what I want to do about the chemo, he does want me but if I want to stop chemo he does not want to pressure me into keeping doing it.

I "think" he wanted to have sex last night but I was tired, not in the mood and he really didn't do anything other than rub my shoulders and ahem other upper areas in a way that did nothing for me so I just went to sleep. So anyways sorry TMI.

So, I'll just keep thinking and see what I come up with when I am not upset, frustrated, anxious, resentful or depressed, but I do thank you all for caring enough to try and help and listening to me (((((((hugs))))))))))

CEA level rising

Right now I am depressed and yet full of anger.


When I told Tom when we go to see the Oncologist that I am going to stop chemo and tell the Dr. why he didn't he say anything. And I mentioned it just now after I got a call from my Oncologists office to let me know my last CEA from 02/08/10 came back 65.8 a raise again of 11.8 points. and again no words, no acknowledgement of what I said.

If he loves me why doesnt' he say anything like "no, don't stop the chemo sweetie, like I said before I want you in my life longer."

Today was the first time I had a PET scan that I did not want him in the room with me (I am claustrophic and he usually is let by the techs to come in and sit by my head and talk to me) but I didn't want him in there today as I am resentful and hurt and angry and depressed. I cried and had a panic attack but surpressed it by wondering what will happen when I die, will I go to heaven, will I go on to a new life? Will I be given a chance to live this life over and do it right this time?

I don't want to believe his words to me when I first went to see the Oncologist were a lie, and yet having been through sickness with his wife before why didn't he tell me before I started chemo that the illness might be a problem with our sex life?

I won't see the Oncologist for another two weeks or thereabout (he said three weeks from the last appointment on 2/8/10) so I have time to think, and this time it's all on me as it seems Tom has no voice to speak about these things, no opinion to give. Although when I asked him if he wanted me to leave so he could be with someone else he said no he loved me and wanted me here.

I can't think straight about myself right now but the time until I see the Oncologist will give me that time to think.

One thing is for certain, my CEA level is going up and that does not mean good things so even if I don't stop the chemo it will only mean maybe going back on folfox-6 regimen and being even sicker again.

So lots to think about, anger and resentment to get over and depression to try and recover from.

Marsha

Thoughts and need advice (This is of a personal nature so .........................)

I have no friends I can talk to, I really sincerely don't have one friend, the ones I had we just kind of "fell away" from each other and when I have made an attempt to rekindle the friendship they weren't interested.

I have no family, I never knew my real mother and father or siblings as I was adopted and had no other siblings in my adopted family nor was my adopted mothers family close and I would have no idea how to find any of them now anyways and my adopted fathers family well his parents passed away a long time ago and he was an only child.

My adoptive parents have both been deceased for some years.

I have two sons, grown, one in Wisconsin I am estranged from and one in Florida who is in rehab, has HIV and has his own problems.


Tom is, was, my miracle, I met him through Craigslist after I had found out I had cancer, had gone through the surgeries, had decided not to do chemo, had been once again abused by a man and had tried and almost succeeded in taking my own life. My friend at the time who I was sleeping on her sofa, would not take me back as a roommate and I had no idea where me and my cat were going to live or survive or anything.

I rented a car, drove from central california back down to southern california, called my one friend and she said she could not help me, I got a motel room with Wi-Fi and made an add on Craigslist, looking for the last love of my life.

Tom answered and we met and talked and I was upfront and honest with him about me, about my past (not pretty) and the cancer and the outcome of the cancer. He said he could handle it and when I went to see an Oncologist to just see where the cancer was at, Tom is the one that led me to chemotherapy as he said he wanted me around "a while longer"

He has always said he loves me, he is a supportive caring man but in his own words he is not my knight in shining armor or my prince charming.

We have been together a few days over a year. In the beginning as with all couples I guess we ummm had a physical relation quite active, then it tapered down and tapered down and now it's pretty much non existant.

I have talked to him about this before, asked him if it was me, had I gotten to heavy, (He used to date strippers and thin women, and I am 240 right now) He said no, he felt uncomfortable with himself (He is upwards of 350) and I always let it slide.

Yesterday after coming back from a 3 1/2 mile walk (no small feat for me with a right ankle that was shattered over a year ago and has plates and pins in it and still hurts) and after an incident in the house, I realized we had not even made love on our "anniversary" a week ago nor yesterday on Valentines day. I realized this at midnight.

I finally talked to him about it and he said again he did not feel comfortable with him but something just didn't ring true about that. Although I can understand it as I don't feel comfortable with me, this is the heaviest I have ever been.

So then he tells me his wife (married still but separated (not legally) who had one time had uterine cancer and still has MS would always turn him down by saying she did not feel good, for about 10 years he says this happened, and he does not want to get rejected by me for making love because I don't feel good.

First of all I have never turned him down even when I don't feel good and second of all that still doesn't ring true with me, yet he says that's what it is.

So, I have made a decision, I will get the PET/CT scan and the MRI to see where I stand with the cancer then at my next Oncologists visit I am going to tell him I am stopping chemotherapy, all treatments.

See when Tom and I first met and for 8 months after, I wasn't "sick", yes I had and have stage IV mets colon cancer but I did not feel sick or have any complaints, now I am sick, I have still neuropathy, fatigue, sometimes dizziness, high blood pressure (I still think that's from the Avastin) but the being "sick" and him worrying I will turn him down for "lovemaking" has ruined something in our relationship, it has made me doubt myself and now doubt him. So something has to change and since chemotherapy made and makes me sick, I am stopping it to save my relationship.

If that still does not work then I am going to check into nursing homes or something or somewhere I can go and just be by myself and wait to die.

Sorry this is so long and so personal and so morbid but I have no where else to turn. I told Tom all this this morning and he didn't say a word.

I am so upset I am crying and he is sitting across from me reading the paper and is oblivious to it.

Thank you for letting me get this off my chest. ((((((hugs)))))))) and everyone is in my thoughts and prayers today.

EDITED:

This is in response to answers I go on the Colon Cancer forum on this subject:

In all other area our relationship is wonderful (okay yes I get stressed at times because "I" try to do too much when I don't feel up to it). We talk, we do things together, we cuddle and well I don't want to walk away from it but I guess I ideally want it like it was, the whole thing.


He does not talk "relationship" things well. So when something happens like this and I cry he would prefer to be a turtle in his shell not noticing.

Yes I have Social Security disability coming in but I don't want to go anywhere else and live but if things don't change with me stopping the chemo and not being "sick" then I don't know what to do. Right now we are "affectionate" roommates for lack of a better word and I feel insecure with the physical side of our relationship not happening, yes he hugs me and holds me at night in bed and we cuddle but maybe I want too much from him and am being selfish, perhaps I should just accept what I have which is more than some people have.

He does love me, he does provide for me, he is concerned for me, he just does not do "relationship talks" well or at all if he can avoid it and well the reason he has given me for our no physical relationship is above.

I brought up counseling today, he was surprised and said he saw no reason for it and he is happy and wants to make me happy and in 4/5ths of the relationship he does.

He does not abuse me, he loves me, I guess I should just count my blessings and leave it at that.

Thank you for your answers and I slept most of today so I guess I should get up and go out on the balcony for fresh air to clear my head.

Also I decided to lose weight so I have a goal to reach to look pretty again and be desirable to him again., maybe that will help.

And yes I have depression I think but I take valium, I don't want to go on a bunch of pills. Maybe I do need professional help but ............ well I don't want to be without Tom, I love him so much I am willing to do what it takes to make our relationship good, maybe if I just stop asking about the physical side and take what he gives and I have then I'll be happy again.. Maybe it's me making myself miserable wanting more than he can give.

I don't want to be alone again, I don't want to try to rent a room in someones house which on my disability is all I could afford, I don't want to give up my cat to move and most of all I don't want to leave Tom as we do have good times and I love him so much and he is good to me.

Sorry crying here again, take care and I'll check in later to post on others profiles. I am sorry to have been a bother. I think I'll just deal with what we have and be thankful for it and not want more.


Total hysterectomy July 23 2008, mass felt in colon.
Colonoscopy Aug 2008
Rigid Sigmoidoscopy with a laparoscopic-assisted partial colectemy with en bloc 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
Latest session: 02/08/10 ~ No treatment, blood draw and saw Oncologist.
Most recent CEA Level 01/25/10 = 54 up from 29.5 on 1/11/10
02/16/10 Pet/CT scan ~ 02/18/10 MRI ~ ? Dr's visit

PET/CT scan and MRI scheduled

PET/CT scan on this coming Tuesday and then MRI on this coming Thursday so that is a load off my mind, then I guess I will see the Dr. in three weeks although that is not scheduled yet, just what He said in his office last time I saw him. Also  my BP is still up but not as bad, my back still hurts despite the cortisone shot and I have to remember to ask my Dr. when I see him about the blood I am finding in my stool, not much but enough to worry me as Tumors can grow back in their original places.


I am having a wonderful Valentines Day with Tom, we took a 3 1/2  mile walk today, a walk (Grins) up and down hills and thought I was going to die with my ankle but we made it (with Tom's encouragement :) and now we are relaxing and watching Lost then the new Star Trek movie.
 
Hope you are all well and having a wonderful Valentines day also.
 

A change of plans?

And yet again the plan seems to have changed I got woke up from a nap by the imaging center calling to set up a PET/CT scan not an MRI on this coming Tuesday, so when is the MRI gong to be set up? Well maybe they'll call before the PET scan and set up the MRI before I go in to see the Dr. in three weeks. I am tired of worrying about changes and such, we'll just see what we see I guess.


Have a great day all.

Oncologists visit

I went to go see my Oncologist today and we had a great talk. I had my blood draw before that so next Monday will call and find out what my CEA levels are doing and guess what? Got a great draw back on the first try (grins) so port not clogged.

So Tom and I go in to see the Dr. and I tell him all that is wrong; my mood swings, my back hurting, my ankle (I had shattered last year) feeling like a block of wood and me being scared that the cancer might have settled in the bones there, had him feel my abdomen (once side tighter and more lumped up (higher) than the other side, the neuropathy in my fingers, my tiredness, my stress levels. my high BP. And then asked questions like can they do a chemo bath on me? How about organ transplants (just questions I came up with and had been thinking about, why are we not going at the cancer as aggresively as we can? Etc.)

So He told me one of the problems was I was looking at this as a death sentence which it is, but do I want to spend every single day of the rest of my life upset and worried and scared? He is treating this as a long term disease just like high blood pressure or diabetes or such. He said I am not anywhere near dying tomorrow, next week or next month so I need to get that in my head and stop scaring myself to death everytime something "out of the ordinary" happens whether it is with me or with something He orders, if it really concerns me call His office or come in or go to the emergency room if it is with my health that day. But otherwise do like I did, write down my questions and he will deal with them.

He doubled the BP med dose as mine is still high 168/102 I think, and is a bit curious as I have only lost 2 pounds even with taking the diuretic. (I haven't taken in the last 4 days cause of the way I have been feeling so I guess that's why. Tom is a big guy and I have gotten used to eating like he does so I guess I have not lost any wieght because I am eating like Tom and I am getting steroids with my treatment.

The tightness and unevenness in my stomach he says is a hernia but didn't say anything else. He had me get a shot of cortisone for the back and ankle pain well it's not working as I came home, my ankle is killing me and my back hurt the minute I bent but it's okay like Tom says it probably has not kicked in yet.

Oncologist says cancer never goes below the thighs so it's not in my ankle but is ordering an MRI for my back. Chemo bath is out as that is only for abdominal cancer and no there is no way on transplants as would have to do both lungs and liver and there are cancer cells in my blood which would just attack the new organs. (I knew the last just wanted to see what he would say). We are not going at the cancer aggressively because it is as he said a long term thing, we will attack it with chemo then back off, attack it with chemo then back off, etc, etc.

The neuropathy in my fingers (which is growing from my fingertips down my fingers) he attributes to the Oxalalplatin, which I last had like 2 months ago so yes I guess the side effects although different than when I had taken THAT chemo can last months after you stop taking it.

So, plan of treatment now? MRI, PET scan, then in three weeks see the Oncologist again (At least that is what Tom says, I don't remember anything past the MRI and Tom had me leave the Cancer Center without making an appoinment for the next visit as He thinks they will make the appt after the PET scan ( I hate that I did not write what the Oncologist said down as now I am confused, I know he said call Him after the MRI but when exactly do I go in to see him? Before or after the PET scan? I know he said 3 weeks but okay there I go confusing myself again and making it harder, so breathe let it go and see how it works out (if it wasn't for valium and vicodin I'd be a basket case swear)

I'll try to post on some of you guys post later on tonight or tomorrow. I hope for the best for everyone and hopefully you won't have to endure any more meltdown posts from me.

Edit: Amy, Oncologist's Assistant just called and said Oncologist wants to see me after the MRI, which she will schedule, I go have then I call her and she makes an appointment with the Oncologist for me, so where does the PET scan fit in? AFTER I see the Dr? By the way that was a rhetorical question as she hurried me off the phone and I no longer am worrying about the stuff as it happens it happens I guess.

From the Colon Cancer Forum about my last post:

I appreciate what you said sheila and I do understand about the system but with this Oncologist, he beside the urologist I still have not heard back from, are the only Dr's I see. And the Oncologist IS the only one who writes the orders so it is him.

As far as my own advice? I can't seem to get perspective when it comes to me. Today I am looking up in the mirror across from me and I am sweating and my hair is sticking up all over the place and my face is sad and streaked with tears as I had a melt down cleaning our place today.

The trash cans (Tom's responsibility) were overflowing and the carpet (He said he would vacum) has not been vaccumed for three weeks and I cannot stand walking on cat litter that our cats throw out of the box and onto the floor so I dusted, cleaned the sink of Tom's hair and whiskers (I HATE that) swept everything from the bathroom floor and the hallway and kitchen floor onto the living room rug and mopped then had a half hour melt down of crying and texting Tom telling him I quit, he'd better do it all himself or hire a maid as of right now I no longer will cook or clean anything.

Why, because I am  sick and he acts like nothing is wrong with me, I had horrendous stomach pains last night and today have to clean so I'm done, I hit the wall, i keep getting upset and trying to do it all and deal with my Dr. I am going to end up in the hospital and I already take valium and vicodin to deal with things.

I am so tired and don't know what to do, Tom is a wonderful man but I can't do this anymore and am thinking of just not going back to the Oncologist again.

Sorry this is a bad post, it is a bad day for me and I just started crying again so am going to log off.

So here we are again and I am totally PISSED OFF

So why am I so mad?


Well since September 2009 regular as clockwork every two weeks on Monday I go in for chemo, no not just chemo, the schedule goes like this;

Bloodwork drawn with CEA level included
See the Dr.
Then Chemo

This has been the schedule EXCEPT the month I had to take off when I had that bad cold and did not want to infect anyone and could not stand the thought of chemo and when my Oncologist "Did not feel the need to order the CEA along with the other tests on my blood".

So remember that Monday is my next Avastin treatment and then a month off? And my BP is up due to "I" think the Avastin and my Oncologist thinks is water retention and I am now on a diuretic, a potassium supplement and a beta blocker.

So I have this paper in my hand for my next two appointments, one Monday and the other, a little less than a month away. I see blood work to be drawn but no CEA so I called my Oncologist's office yesterday, left a message to ask that it be included. (Remember my CEA had gone up almost double what it was at the last draw from the one two weeks before that)

The Assistant calls me today and tells me the Oncologist has ordered no blood work to be done Monday and I don't have an appointment with him Monday, I am only going there to get the Avastin. I look at the paperwork closer and sure enough the blood work (without the CEA level) and the appointment to see the Oncologist are almost a month away NOT Monday.

Is this man super stupid or insensitive or just plain out of his mind? My CEA level is rising, I have hypertenstion/high blood pressure because of the Avastin and Monday is the last time I will see him for almost a month and he does not order any blood work or set an appointment for me to see him until almost a month after this treatment??????????

The Assistant put the order through for the blood work to be drawn on Monday including the CEA level and said the Oncologist will be in on Monday (He was out this whole past week) but can't guarantee an appointment with him.

I called Tom a few moments ago crying hysterically and Tom said we will just go in Monday and check in and demand to see the Oncologist and we won't leave the Cancer Center until we do.

Why does this idiot of a Dr. do this to me and why do I stay with him instead of finding another Oncologist.

You know what I am getting from everything this man is doing? I am getting it doesnt matter because I was walking dead when I first hit his door and it's advanced faster than he thought it would, I have the KRAS mutation so second and third line chemos are out and he doesn't know what to do but doesn't have the guts to tell me the truth.

I might be wrong but that's the vibes I am getting and I am pissed and scared.

Going to take a few valium and lay down

I am so glad for those of you who have kind, understanding, will talk to you and do the right thing Oncologists cause I don't it seems.

((((((((((((hugs)))))))))))))))))

Arrrrrrrrrrrrgh

Okay, so am taking the diuretic and potassium and my BP is fluctuating from a high of 180/120 to today 168/102. Also am taking Tovranil for my bladder issues and waiting for next Monday to have my last Avastin treatment before a month off (going to get a straight answer from the Dr. on that one when I see him before the treatment)

So now what happens? I am having dizzy spells, buzzing in my head and have developed severe neuropathy in my my fingertips (numb but hurt) and that is interfering with my doing certain things.

Called the Dr's office today as he told me to and gave his assistant all the information about what the urologist said, what my BP has been doing, the dizziness and buzzing in my head and the neuropathy, she says "Oh, he's not in today, I'll have his PA call you later today"

ARRRRRRRRRRRRRRRGH

Thanks for letting me vent (sheepish grin again)

Update: The PA called and is going to call in a beta block or ace inhibitor as she is not happy with my blood pressure at all and also she told me my last CEA, 54, so it's going up from the one before which 29.5  
:( (Feel like crying as I am scared now