CancerDad, Cats, Boss, Phil in AZ, hiswife, and everyone else the chemo brain has made me forget :dizzy: I just wanted to say hey and see how everyone is doing. I have been really busy since I returned to work, chemo's put on hold since my terrible allergic reaction, apparently only 1 percent has it and I had to be in it. Long story, I should resume something in Sept after I see a GI Oncologist at Georgetown and see a Gyn Oncologist for the mass on my left ovary, but my CA-125 did come back within normal limits.

My father is doing remarkable well after his colon cancer surgery, heck the man's had 5 cancers in 12 years, I think he's blessed to still be here at 71. I did test positive for HNPCC, no surprise there. My uncle, my father's brother in law, has just been diagnosed with advanced brain cancer, and they only give him about a month or so to live, he started having some symptoms a few months ago and choked it up to old age, he's 72, the tumor is very invasive and they can't operate or it will paralyze him. I feel so horrible for my aunt, that could have been me in February. I didn't want to go see him at first when I found this out because I thought I felt weird facing someone with a terminal illness that's inoperable when I survived, almost quilty, but I am going to go see him tomorrow. Does that sound weird btw?

Well I will stop the rant, I hope everyone is doing well. Best wishes, hugs and prayers to ALL!:angel:

Hi Christy, I'm so glad you checked in. I have a question for you that may alleviate some of my fears. You mentioned your chemo is on hold for a while. I have not had chemo since June 27th and it has really been worrying me. It is due to my white blood cell count being down so low. My oncologist is baffled, so I cannot get a treatment util it comes up. After chemo I'll have to start on Neulasta. How many weeks have you been off your treatments? Is your doctor concerned about any spreading that might take place during the waiting period? How many treatments did you have before the allergic reaction? I'm stage 3C with lots of lymph node involvement. What stage are you? Are you handling it all right emotionally? I have anxiety attacks at times. Sorry so many questions, but you are the only one I know of going through this at the same time I am. So any answers you can give me will be appreaciated tremendously. I'm glad you can go back to work.
thanks in advance,
Barbara

Hi Christy,

Good to hear from you. I am glad that your CA has returned to normal. I am so sorry to hear about your uncle. It seems you and your family have really had more than your share. Don't feel guilty because your aunt and uncle wouldn't want you to feel that way. I know that they are thankful that you are doing well and wouldn't want it any other way. I am glad that your dad is doing so well. He sounds like a real fighter to have gone through everything that he has in the past 12 years.

Things are going really good right now. Hubby had his ct and it showed two spots in his liver in the very same place that the tumors were in his scan from February but since he had surgery in March the oncologist said that he was sure that the one on the right side was scar tissue from the ablation and the left side (surgeon resected the whole left lobe in surgery) he was sure was the tube from the hepatic artery pump. He sent the scan to the surgeon to get his opinion, but the oncologist wasn't worried about it at all. DH's blood work is all normal and he feels great. He will have 3 more treatments (1 per month) and then another scan. If all looks good they will discuss removing the pump. We trust this oncologist totally, he is the top one in this area. BUT I will insist that they do a pet scan before removing the pump because there were active cancer cells left in the left lobe after surgery. He wasn't able to get clear margins during surgery and I don't want them to stop this treatment until it is all gone.

Take good care of yourself.

Hi Christy, I'm so glad you checked in. I have a question for you that may alleviate some of my fears. You mentioned your chemo is on hold for a while. I have not had chemo since June 27th and it has really been worrying me. It is due to my white blood cell count being down so low. My oncologist is baffled, so I cannot get a treatment util it comes up. After chemo I'll have to start on Neulasta. How many weeks have you been off your treatments? Is your doctor concerned about any spreading that might take place during the waiting period? How many treatments did you have before the allergic reaction? I'm stage 3C with lots of lymph node involvement. What stage are you? Are you handling it all right emotionally? I have anxiety attacks at times. Sorry so many questions, but you are the only one I know of going through this at the same time I am. So any answers you can give me will be appreaciated tremendously. I'm glad you can go back to work.
thanks in advance,
Barbara
Barbara,

Sorry it took me awhile to answer you, I started chemo June 5th, that was my first cycle of 5FU, Oxaliplatin, and Leucovrin, then I had my second cycle June 20th, that's when I had my allergic reaction, after that, I didn't have chemo again until 7/3, of which was only a 5FU bolus. My cycles consisted of 4 hours of chemo in office then coming home with a 46 hour pump. My cancer was stage IIA. I had one polyp, that was a sessile polyp, it spread through all four walls of the colon, it was 3.2 cm in size, and I didn't have any lymph node involvement out of 16 nodes, they were all free. I had my total colon removed, I have genetic HNPCC-basically the gene that can cause colon cancer. My docs aren't too concerned about any growth right now, as I am supposedly cancer free, however, they are concerned about some cancer cells still being there. I have some other issues going on right now and they want to get those addressed, like the mass on my ovary and what not, but other than that, they want me to see a specialist because of the allergic reaction, as I stated, sorry for the repetition, but they DON'T not want to give me anything, they'd rather give me something than nothing because of my high chance of reoccurance and having the genetic predisposition. I was against chemo at first, but now I sort of agree, I should have some preventative therapy.

Emotionally and mentally-at first when I had surgery and was going through recovery, I was upset and mad at times and even depressed, but now I feel I am truly blessed, because I am still here. I know that might sound cheesey, but everyone that has had this genetic mutation in my family has died, including my mother. My father just got operated on for colon cancer and has had 5 of them, my uncle just got diagnosed with advanced brain cancer and has only months to live, and my other uncle has had a reocurrance and spreading from an old prostate cancer, so I feel very fortunate. I was a little down when I got the results from the genetic mutation, because I have the 60% chance of a reproductive cancer, 13% of gastric, kidney and ureter cancers and also at an increased risk for brain cancer, I am 29, no kids, and chemo is going to put me in menopause, so with that and a hysterectomy the horomonal imbalance can increase my chances of breast cancer, so that kind of upset me when I finally got the final result that I did have it. But again, I feel that there is always someone that is in a worse position than me, and I should keep my complaining to a minimum. The guys here know that I have ranted frequently and even psychotically at times though. Cancer has really opened my eyes, I've always seen it from a caretaker and relative point of view, but being the patient is something totally different. I feel like I have a second lease on life and that I am going to beat this, it's taken me a while to get here. I think that if you're having anxiety issues you should totally try some anti-depressants and maybe even talking to a therapist. It's very hard to deal with this disease, so I highly advise that, CD can atest to that! I had problems with WBC too btw, mine were sky high when I was on chemo, not low, high so they put me on steriods which made them higher, but now my ranges are normalling out, other than the RBC which is always low. I hope some of this helps or at least provides you with some of the answers you were looking for, good luck with everything and let me know how your'e doing!

Hi Christy,

Good to hear from you. I am glad that your CA has returned to normal. I am so sorry to hear about your uncle. It seems you and your family have really had more than your share. Don't feel guilty because your aunt and uncle wouldn't want you to feel that way. I know that they are thankful that you are doing well and wouldn't want it any other way. I am glad that your dad is doing so well. He sounds like a real fighter to have gone through everything that he has in the past 12 years.

Things are going really good right now. Hubby had his ct and it showed two spots in his liver in the very same place that the tumors were in his scan from February but since he had surgery in March the oncologist said that he was sure that the one on the right side was scar tissue from the ablation and the left side (surgeon resected the whole left lobe in surgery) he was sure was the tube from the hepatic artery pump. He sent the scan to the surgeon to get his opinion, but the oncologist wasn't worried about it at all. DH's blood work is all normal and he feels great. He will have 3 more treatments (1 per month) and then another scan. If all looks good they will discuss removing the pump. We trust this oncologist totally, he is the top one in this area. BUT I will insist that they do a pet scan before removing the pump because there were active cancer cells left in the left lobe after surgery. He wasn't able to get clear margins during surgery and I don't want them to stop this treatment until it is all gone.

Take good care of yourself.

It's good that his blood work is looking good and he's feeling great. I don't blame you about the pump thing, I would feel the same way and I would be insisting on that PET scan too. I am glad you feel trust in his oncologist that is so important! It's good to hear he is feeling good to, is he still having the neuropathy problems? I think if I remember correctly and swelling and fluid retention in the extremities? I will be praying for the both of you, good to hear from you.

Hi Christy,
Thank you so much for explaining your situation to me. My heart goes out to you and your various family members. At 29, you have got to be concerned about your life. You are young and have so much to live for. I'm 62 and my problems are ever so slight compared to what your family members and you have been through. I know a family who has had 2 brothers die and almost all of their sons have had colostomys. It seems to run in the male side of their family.
Lexington Park is across the Potomac from me. I'm straight across from Piney Point and have a cousin who lives on Essex Drive in Lexington Park.
My spirits are better than they were this morning. I am already on an antidepressant and have Xanax to help during my "blue moments". My granddaughter is here with me tonight, so she will keep me busy.
CancerDad is an inspiration to all of us. As he says "Attitude is everything."
God bless you, Christy. You and your family will be in my prayers.

Barbara in VA

I'm doing OK but the computer isn't(again) Why is it that electronic parts only come with 6 month warranties.

Sorry to hear of other's problems. Makes my concerns seem trivial. I had what must have been an infection in my nose and throat, second time in a year, that is sore and feels like I have something literraly stuck in there but the docs can't see anything (naturally) and it clears up suddenly after 2-3 weeks. Of course to me its an indication of esophageal cancer when it is there. It would just be so ironic to start with rectal cancer at the anal verge and end up with esophageal cancer in my throat.

I still get leg cramps and it is becoming apparent that the nerve damage that had my right leg paralyzed for a few days after surgery is likely the root cause of these cramps.

Hope that at least the weather is co-operating for everyone this summer. Its been hot here but can't complain since it will be -30 C again soon enough.

JD:
Great to hear from you! I'm glad to hear you are finally feeling better with the sinuses. I understand your cause for concern...and wouldn't that be an irony in life-- start in the end, end in the beginning! :eek:

As for the leg... sounds like it's flaring again too. Have you done more activity on it than normal for you? You can probably tell best if it's the same pain as you had once before. I hope that clears for you soon. As you know, I KNOW chronic pain, and it aint fun!

Great to hear you posting again. I don't know, maybe you have been, and I keep missing your posts... happens sometimes.

Feel Better,
CancerDad

I hope that I haven't by any means, made any of you feel that what is going on with you, feel trivial about it. Please don't, we all deal with things differently and have our own issues that trouble us, it's okay, we're all human. I don't mean to put anyone down or make them feel bad about feeling bad, that's not my intention at all. We all have our bad days and for me, I have what I like to call "pity" parties for me, anyways, mine are in large groups of 1 and usually include myself when I have my bad days. I have bad days too, the important thing is that the good days out number the bad and we live life to the fullest with the best ability that our body allows us to, in my opinion.

Barbara, Essex Drive isn't too far from me, it's right up the street, don't feel trivial at all, please do not, I am glad to hear you have something to help you out and that you're grandchild is there to spend the night with you. I found when I had a lot of free time I would think Cancer Cancer Cancer, so I totally know what you mean. I am glad you're feeling better.

JD-Sorry to hear about whats going on with your computer, sinuses and leg. My father has leg cramps consistently, he's had them his whole life, ironically when I was a teenager I started developing them, my sister has them too now, I don't have them as much, only when I am pre menstrual, which isn't any more, but anywho, he takes potassium supplements and they help him tremendously. I know if it is the nerve damage there isn't much that could be done pill wise, I don't think, but I don't know, but the supplements might help, you might want to ask your doc. Please don't feel trivial about anything you're going through, you're concerns are just that, and they're important! I hope I didn't make you feel any less, I sincerely apologize if I did.

CD-I am glad to see you still have that positive attitude that keeps shining through and helps all of us, as so many others do on this board too.

Hugs to ALL of you!

Hi all:

JD-- I don't mean to jump in on you, but wanted to stick my big nose into this in the event you are still having computer difficulties. JD... Christy mentions medication for nerve pain from nerve damage. There is a great new drug available called Lyrica, specifically indicated for diabetic neuropathy, but is used for ANY nerve pain. I take it, in combination with other meds, and it helps for the nerve pain part of my chronic pain. You may want to talk with your doctor about it if it's available in Canada.

Again, good to hear from you again...stay in touch. :)

~CD

Hey Y'all and all that...

I'm still standing. Chemo has been getting to me and I told the nurse I wasn't doing it last week, then this week my blood platelet count was too low, so I get aother break.

Its obviously working for me, as you all remember my initial prognosis, May 6, 2005, big *** tumor (pun intended), stage iv, mets to the liver, 5 total and one very large growth, plus 2 spots in the abdomen, 2 months to live if I don't repond to chemo (I'd love to get that doc alone for 5 minutes).

Since then the tumor is down to scar tissue, doc wants to do a biopsy to confirm, but no movement or change in 8-9 months. Abdomen spots are down to almost nothing, doc thinks they can't get smaller, possibly clear. Liver mets are all gone but 2, one growth started in between the 2 liver spots, then they swithced meds back in January. Last CT scan (April) showed that liver mets shrunk even more, getting very vague, abdomen spots shrunk even more. No change in area around tumor.

My big problems are all chemo. Nurse tells me that I have had it longer than anyone here without a break. My butt is sore, which has happened before, but it always makes me nervous, even though I have no cancer symptoms like before. I am constantly fatigued, get intermitent pains, skin is breaking out on my back like crazy, always sore there. Its been a long ride.

I'm trying to stay positive and not get too carried away with avoiding the chemo/poison infusion. I know it worked, I feel it. I haven't really taled to the doc about it, but since my last prognosis, things have really hanged and there are many was to combat it, should it grow again, which I pray won't all the time....I'm in serious limbo, accepting it, but I don't do much these days

Thanks goodness I have things to pass the time by with during this time of my life, music, futbol, micro brews, red wine, the little blue pill and a hot wife who has been great:cool: .....just waitin' for the cure, pretty please:angel:

Hey Y'all and all that...

I'm still standing. Chemo has been getting to me and I told the nurse I wasn't doing it last week, then this week my blood platelet count was too low, so I get aother break.

Its obviously working for me, as you all remember my initial prognosis, May 6, 2005, big *** tumor (pun intended), stage iv, mets to the liver, 5 total and one very large growth, plus 2 spots in the abdomen, 2 months to live if I don't repond to chemo (I'd love to get that doc alone for 5 minutes).

Since then the tumor is down to scar tissue, doc wants to do a biopsy to confirm, but no movement or change in 8-9 months. Abdomen spots are down to almost nothing, doc thinks they can't get smaller, possibly clear. Liver mets are all gone but 2, one growth started in between the 2 liver spots, then they swithced meds back in January. Last CT scan (April) showed that liver mets shrunk even more, getting very vague, abdomen spots shrunk even more. No change in area around tumor.

My big problems are all chemo. Nurse tells me that I have had it longer than anyone here without a break. My butt is sore, which has happened before, but it always makes me nervous, even though I have no cancer symptoms like before. I am constantly fatigued, get intermitent pains, skin is breaking out on my back like crazy, always sore there. Its been a long ride.

I'm trying to stay positive and not get too carried away with avoiding the chemo/poison infusion. I know it worked, I feel it. I haven't really taled to the doc about it, but since my last prognosis, things have really hanged and there are many was to combat it, should it grow again, which I pray won't all the time....I'm in serious limbo, accepting it, but I don't do much these days

Thanks goodness I have things to pass the time by with during this time of my life, music, futbol, micro brews, red wine, the little blue pill and a hot wife who has been great:cool: .....just waitin' for the cure, pretty please:angel:

Boss:
I am SO Happy to hear that things are taking an upward turn for you. As we have discussed before, there is a fine line between continuing poisoning your body (taking chemo) and stopping. This is a decision you know that only YOU can make with the help of your wife and kids. You are essentially doing the Saltz Regimen (same that I did) that actually, literally killed a lot of patients and essentially has been abandoned by most due to studies which revealed significant drop-out rates by MOST patients and now most major cancer centers and oncologists do not use this regimen. :eek:

So, in my eyes you are the MAN for being able to continue for as long as you have!!! I KNOW first hand how horrific this particular treatment is. And on top of it, you are taking Avastin, which alone causes that painful acne that you have on your back. Despite how horrific this therapy is though, it DID/DOES WORK for many patients if it doesn't kill you and you can stay on it. I think your results prove this, and I mean this seriously when I say how proud I am of you and take my hat off to you for your bravery and persistence! :cool:

I really don't mean to sound negative, but this regimen REALLY IS BRUTAL, and I applaud you. But listen man, when/if you FEEL that you can't take anymore, PLEASE listen to your body. This was my experience... I just KNEW when I could no longer take this...I felt that any more of the regimen would LITERALLY kill me. So, after discussios with my oncologist, I stopped. You WILL know if this time comes and you can talk with your oncologist about going on a little less harsh of a regimen. There is NO shame in this.

And, at the risk of pissing you off again!!, as I once did when we first met, I feel I must say that I am EXTREMELY envious that the little blue pill (I'm assuming you're taking for a little assistance below the belt) works for you!!! But I do hope that you are wearing something to protect the woman you love with the nasty regimen you're on. ALSO, I hope that you are not overdoing it, and getting the rest your body needs, while enjoying EVERY OUNCE of life. :jester:

I TRULY hope that you do not take offense at my responding to your bringing up the topic of sex, as I have come to respect and care for you as a fellow Survivor on this Board, and really want to see you thrive. I have read your posts and have come to respect and think highly of you as a 'bro' here. I hope that since you have now read many of my posts here, and have gained insight into my own personal thoughts and feelings as I fight my battles, I sincerely hope that you take my words as I intend them... just as advice, fellow buddy to buddy. ;)

Take care man, and know that I, and the rest of the people who have become your family on this Board, wish you the BEST OF LUCK in your decision. No matter what my friend, I know that you will give it your all and continue to fight like "h" "e" double hockey sticks!!! :angel: We're here for you buddy! ;)

Be Good,
CancerDad :angel:

Boss:

I TRULY hope that you do not take offense at my responding to your bringing up the topic of sex, as I have come to respect and care for you as a fellow Survivor on this Board, and really want to see you thrive. I have read your posts and have come to respect and think highly of you as a 'bro' here. I hope that since you have now read many of my posts here, and have gained insight into my own personal thoughts and feelings as I fight my battles, I sincerely hope that you take my words as I intend them... just as advice, fellow buddy to buddy. ;)

Take care man, and know that I, and the rest of the people who have become your family on this Board, wish you the BEST OF LUCK in your decision. No matter what my friend, I know that you will give it your all and continue to fight like "h" "e" double hockey sticks!!! :angel: We're here for you buddy! ;)

Be Good,
CancerDad :angel:

Love you my brotha man, I take all points like you intended....thanks for words on me taking the death regimine, I'm thinking of copying the post and showing it to my oncologist, I know she'll scarf at it and I'll be able to hide behind the fact that some guy I really don't know on the internet told me you're trying to kill me....:D

Hi Bossan :) Glad to hear your doing well and still around giving those doctors hell!! And I think u should copy CD's post and hand it to him!! LOL
also.. glad to see u two guys are getting on well now..
Life itself is pretty good ay Yup.. we the cancer survivors! lol. sounds funny.
Anyway take care of you
Maz