Metastasis to pelvic region
Help!!!
Robinleighu
Comments
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Sorry About the Recurrence
I (thank goodness) have not had any "distant" mets (I did have two lymph nodes affected), so cannot help you with any personal experience. I would be sad, afraid and confused (and p'd off) in your place. I'm hoping that someone chimes in here with news to lift your spirits. So, it's carboplatin, erbitux, and is the third drug 5FU? I've had cisplatin, carboplatin, taxotere and 5FU - as I'm sure you know, the drugs your hubby has had and will have are the drugs of choice for most of our docs. I'm hoping for fabulous results.0 -
Sounds Familiar
Robinleigh:
This sounds all too familiar as my husband had the same thing happen although it was 1 1/2 years before it recurred and had metastisized. However he did take the erbitux and taxotere and we did have some success with it. He also did some radiation. Like your hubby Charlie's was no longer curable but treatable. I know you said you didn't want to hear percentages, how long, etc. but I don't feel I could honestly not tell you and you may already know, but Charlie did pass away last Aug. 21. Now, remember everybody's different and miracles do occur! Charlie had a great attitude, never complained, like why me?, etc. It was me who was the basketcase! And Charlie's was due a lot to a bleeding ulcer that was cancerous. His had metasized to lung, liver, and bones and was the same type cancer as he had in his throat. But the treatments were successful in that the lump on his back did go away. He just started having blood count issues and then a gi bleed, etc. etc. But the erbitux and taxotere (I think it was taxotere) did help and we were able to thoroughly enjoy our time together and he got everything in order for me. He also had the cisplatin at the beginning and radiation. So never give up. If you would like to PM me feel free to do so. You and hubby will certainly be in my prayers. Best of luck and God Bless!
Jan0 -
Percentages and Statistics
Robinleigh,
Oh honey, I am so sorry to hear about your husband.
I am so angry my buttons are boiling! Oh not at you, but at doctors who try to give patients percentages and statistics on how long people have to live and who they think will make it etc.
I, for one am tired of being treated like a statistic. I'm a human being, with emotions, feelings and brain cancer. Just because I am a patient doesn't mean that I stop feeling what I feel. I don't think it is right that doctors try to lump all patients into one barrel and to start quoting stats at us on how long we have to live, etc. I believe that when they do that, some people just give up the will to fight.
Kudos to you for not buying into that. Please, keep trying to fight for as long as you and your husband can. Please don't ever let someone else take away your HOPE. HOPE that maybe the doctors are wrong. HOPE that maybe the newest treatment will succeed where a previous one has failed. HOPE that he will beat the cancer. HOPE is an action word and no one, not even a doctor with all their stats and percentages, can ever steal that away from you.
Blessings!0 -
Never lose hope
Just because the doctor says no cure doen't mean no healing. I personally know two people who were sent home to die from cancer and who through the power of prayer. One is still living strong 30 years later,
I too would be scared and worriedm that is normal. O will pray for your husbands healing and your comfort and peace.
Blessings
Debbie0 -
I agree
Robin:
After reading some of the replies about percentages and statistics and how doctors seem to be all caught up in them. I have to tell you both my husband's onc. and radiation onc. never once brought that up themselves. If we asked they told us what they thought but also added and were quick to add, "People beat those odds, percentages, and statistics all the time." As a matter of fact my husband's onc. who put together his practice, told me that when people come to them; they are looking for hope and that's what he and his associates try to do - give them hope. Just thought you might like to know there are some docs out there that are not all tied into percentages, statistics and the like and do treat their patients as people; not a statistic, or percentage. We were truly blessed to have such caring docs and their staffs as they were. As a matter of fact I've never seen a doctor's office run like these two are. They definitely go the extra mile and above and beyond the call of duty for their patients. So here's to positive thinking and don't ever give up hope - it always awaits us. Still praying for you and hubby and "hoping" for the best!
Jan (Basketcase)0 -
TIME TO FIGHT THE GOOD FIGHT
Robin, I am sorry to hear of this news. My prayers and many positive thoughts go out to you and your family. Everyone is right about statistics being that we are all very much induvidual numbers when it comes to this. You will fight the beast once again and come out the other side OK.
Best!!
Mike0 -
So sorry to hear this. Oneluv4lacrosse said:TIME TO FIGHT THE GOOD FIGHT
Robin, I am sorry to hear of this news. My prayers and many positive thoughts go out to you and your family. Everyone is right about statistics being that we are all very much induvidual numbers when it comes to this. You will fight the beast once again and come out the other side OK.
Best!!
Mike
So sorry to hear this. One thing I have learned from this site, is that there are many survivors who have beat the odds, and many more than once. Keep up the fight and I will be praying for you and your family.0 -
Numbers and percentages.arndog64 said:So sorry to hear this. One
So sorry to hear this. One thing I have learned from this site, is that there are many survivors who have beat the odds, and many more than once. Keep up the fight and I will be praying for you and your family.
No, I don't like to play the numbers game. Majority of my doctors never told me my crappy odds. My odds on my illnessess have been pretty bad, and I am still here. Many people with my blood disorder die in their 20's. Most die during radiation. (I forget, it was either 6/7 out of 10, that died)
There is always hope. Individual people are not statistics, they are people. I am praying that he beats the odds.0 -
Hope
Frankly, being told percentages and life expectancy is not at all helpful. Having hope will help you and your husband get through treatment but having negative thoughts and feeling discouraged is entirely normal. You need to allow yourself to feel sad. It is ok to cry. I hope you and your hubby are able to get some pleasure out of life for whatever time remains. Karen0 -
Hi Robin, I don't know how
Hi Robin, I don't know how anyone can even deal with this disease a 2nd time. I like you am a caregiver. My wife Connie had squamous cell carcinoma and so far no recurrence but she is only 4 months out of treatment. It breaks my heart to hear this happen to anyone because I know what your husband and you have already gone through. I have to admit that I don't know what I would say to my wife if this happens to her and I have lost a lot of my confidence that this won't happen to us. Jan (basketcase) is truly a inspiration the way she has tried to help others although she lost her husband and best friend. I pray that God will give you the strength in the future to deal with this and he can perform miracles. I know when I mention that Connie has been fighting cancer, most people say I'm sorry and basically write her off as not going to survive and it is very frustating. I like you have never asked a doctor what her odds are and never will because I don't want to know. It's just a shame that researchers have not found the cause or cure for a disease that ruins lives so often. We need more drugs like Erbitux that attack only the cancer cells, but we need them to get every one of them so their is no recurrence. My wife did have a dramatic response to induction chemo after her 1st treatment and she did cisplaten, erbitux, taxotere and 5fu and I hope your husband responds the same way and maybe his tumor can shrink so small that you will be able to have more years of companionship with each other. I will pray for your husband and you, Love Homer0 -
Hi Robin,connieprice1 said:Hi Robin, I don't know how
Hi Robin, I don't know how anyone can even deal with this disease a 2nd time. I like you am a caregiver. My wife Connie had squamous cell carcinoma and so far no recurrence but she is only 4 months out of treatment. It breaks my heart to hear this happen to anyone because I know what your husband and you have already gone through. I have to admit that I don't know what I would say to my wife if this happens to her and I have lost a lot of my confidence that this won't happen to us. Jan (basketcase) is truly a inspiration the way she has tried to help others although she lost her husband and best friend. I pray that God will give you the strength in the future to deal with this and he can perform miracles. I know when I mention that Connie has been fighting cancer, most people say I'm sorry and basically write her off as not going to survive and it is very frustating. I like you have never asked a doctor what her odds are and never will because I don't want to know. It's just a shame that researchers have not found the cause or cure for a disease that ruins lives so often. We need more drugs like Erbitux that attack only the cancer cells, but we need them to get every one of them so their is no recurrence. My wife did have a dramatic response to induction chemo after her 1st treatment and she did cisplaten, erbitux, taxotere and 5fu and I hope your husband responds the same way and maybe his tumor can shrink so small that you will be able to have more years of companionship with each other. I will pray for your husband and you, Love Homer
You guys are in my
Hi Robin,
You guys are in my prayers. We've been told the same thing. Don't give up.
My best friend's mother was told she had 6 months to live because she had ovarian cancer that had spread to her liver really bad. The oncologist said it was one of the worst cases he had ever seen. He reluctantly "let" her do chemo. That was 23 years ago.
And really when you think about it, no one is really cured of this beast. I know a lady that had breast cancer 19 years ago and its now back in her spine. Cure means we can keep it from ever coming back. Like the cure for polio. All they're really doing is treating it with everyone...some may never have a recurrence, but there's no gaurantee. So that is not a cure. If they could cure it no one would be terrified when they go for their follow-ups. so we must be honest about that.
Trust in GOD. He can take care of this and wipe it out.
I HATE CANCER!!!!!!!!!!!!!!!!!!!!!!!!!!!!0 -
HI Robintesa said:Hi Robin,
You guys are in my
Hi Robin,
You guys are in my prayers. We've been told the same thing. Don't give up.
My best friend's mother was told she had 6 months to live because she had ovarian cancer that had spread to her liver really bad. The oncologist said it was one of the worst cases he had ever seen. He reluctantly "let" her do chemo. That was 23 years ago.
And really when you think about it, no one is really cured of this beast. I know a lady that had breast cancer 19 years ago and its now back in her spine. Cure means we can keep it from ever coming back. Like the cure for polio. All they're really doing is treating it with everyone...some may never have a recurrence, but there's no gaurantee. So that is not a cure. If they could cure it no one would be terrified when they go for their follow-ups. so we must be honest about that.
Trust in GOD. He can take care of this and wipe it out.
I HATE CANCER!!!!!!!!!!!!!!!!!!!!!!!!!!!!
you are going through what we all fear actually, a recurrence. I can tell you that I have friends that have gone through a great deal and are still living each day to the fullest. I was told once that cancer is a chronic condition because it affects your mind as well as your body.
I will add you, and hubby, to my prayers. keep positive, fight the fight, statistics are numbers and you two are breathing humans who can overcome this crap....I know you can do it!!
All the best,
Steve0 -
Pelvic areahawk711 said:HI Robin
you are going through what we all fear actually, a recurrence. I can tell you that I have friends that have gone through a great deal and are still living each day to the fullest. I was told once that cancer is a chronic condition because it affects your mind as well as your body.
I will add you, and hubby, to my prayers. keep positive, fight the fight, statistics are numbers and you two are breathing humans who can overcome this crap....I know you can do it!!
All the best,
Steve
Possible I have a similar thing happening with me. As for where it is- I don't wanna talk about it! As for how big it is- a lot bigger than a golf ball. Ultrasound is to hopefully determine it's physical properties/state. Thing is- I've known about it for close to 10-years, and my NPC showed less than 3 years ago. Was a lot smaller up until about 1 1/2-years ago, when I noticed it getting bigger. See a Urologist w/experience in C Surgery on 8/15. My PCP said this will likely take an Op to deal with it (to which I replied, "Come what may"), but did tell me the Pet Scan in April, as well as the three prior ones, shoulda shown it as C if it is C. Possible for it mutate into being C?
And, oh, did I mention that I don't wanna talk about where it is?
kcass0 -
Stay on Top Of ItKent Cass said:Pelvic area
Possible I have a similar thing happening with me. As for where it is- I don't wanna talk about it! As for how big it is- a lot bigger than a golf ball. Ultrasound is to hopefully determine it's physical properties/state. Thing is- I've known about it for close to 10-years, and my NPC showed less than 3 years ago. Was a lot smaller up until about 1 1/2-years ago, when I noticed it getting bigger. See a Urologist w/experience in C Surgery on 8/15. My PCP said this will likely take an Op to deal with it (to which I replied, "Come what may"), but did tell me the Pet Scan in April, as well as the three prior ones, shoulda shown it as C if it is C. Possible for it mutate into being C?
And, oh, did I mention that I don't wanna talk about where it is?
kcass
Kent, you have as much knowledge and experience as any of us...stay on it and keep everyone aware of any changes....
Best to you brother,
John0 -
The area that shall not be namedKent Cass said:Pelvic area
Possible I have a similar thing happening with me. As for where it is- I don't wanna talk about it! As for how big it is- a lot bigger than a golf ball. Ultrasound is to hopefully determine it's physical properties/state. Thing is- I've known about it for close to 10-years, and my NPC showed less than 3 years ago. Was a lot smaller up until about 1 1/2-years ago, when I noticed it getting bigger. See a Urologist w/experience in C Surgery on 8/15. My PCP said this will likely take an Op to deal with it (to which I replied, "Come what may"), but did tell me the Pet Scan in April, as well as the three prior ones, shoulda shown it as C if it is C. Possible for it mutate into being C?
And, oh, did I mention that I don't wanna talk about where it is?
kcass
sounds like it has nothing to do with your NPC. Good news that it did not show up glowing in previous scans. My understanding (both from the experience of others and from reading) is that the "benign enlargement" can't mutate, but doctors watch it carefully as it could mask symptoms of a newly developing cancer in that area.
Generally, they try to treat the symptoms - if the enlargement is causing a blockage, they often "roto-rooter" to open it back up (a bit like a Foley, but more aggressive). Next step up is actual removal of tissue, but only that tissue causing blockage (they can do it via "normal" incision, laproscopically or through, um, existing access). Lastly, they might just take the whole gland out (again, possible choice of big, small or no incision).
Although I haven't been through this, but friends and relatives have, I get the impression it is nowhere near as tough a treatment as H&NC (especially as you don't do chemo and radiation) and is likely to affect your daily habits less and for a shorter time.
I hope you get good news at your appointment.0 -
Nothing worseDrMary said:The area that shall not be named
sounds like it has nothing to do with your NPC. Good news that it did not show up glowing in previous scans. My understanding (both from the experience of others and from reading) is that the "benign enlargement" can't mutate, but doctors watch it carefully as it could mask symptoms of a newly developing cancer in that area.
Generally, they try to treat the symptoms - if the enlargement is causing a blockage, they often "roto-rooter" to open it back up (a bit like a Foley, but more aggressive). Next step up is actual removal of tissue, but only that tissue causing blockage (they can do it via "normal" incision, laproscopically or through, um, existing access). Lastly, they might just take the whole gland out (again, possible choice of big, small or no incision).
Although I haven't been through this, but friends and relatives have, I get the impression it is nowhere near as tough a treatment as H&NC (especially as you don't do chemo and radiation) and is likely to affect your daily habits less and for a shorter time.
I hope you get good news at your appointment.
It seems to my husband and I than the fight in the head and neck region it's just horrendous but look at all of you who survived it. Such strong people and strong caregivers. But the recurrence treatment is not as hard to endure physically. The prognosis is just soooo difficult because it is no longer considered curable...only treatable. So the emotional and mental battle takes on a new level of pain and new challenges to maintain a consciousness of hope. We are working hard to get that mindset and be determined to beat this.0 -
Exactlyconnieprice1 said:Hi Robin, I don't know how
Hi Robin, I don't know how anyone can even deal with this disease a 2nd time. I like you am a caregiver. My wife Connie had squamous cell carcinoma and so far no recurrence but she is only 4 months out of treatment. It breaks my heart to hear this happen to anyone because I know what your husband and you have already gone through. I have to admit that I don't know what I would say to my wife if this happens to her and I have lost a lot of my confidence that this won't happen to us. Jan (basketcase) is truly a inspiration the way she has tried to help others although she lost her husband and best friend. I pray that God will give you the strength in the future to deal with this and he can perform miracles. I know when I mention that Connie has been fighting cancer, most people say I'm sorry and basically write her off as not going to survive and it is very frustating. I like you have never asked a doctor what her odds are and never will because I don't want to know. It's just a shame that researchers have not found the cause or cure for a disease that ruins lives so often. We need more drugs like Erbitux that attack only the cancer cells, but we need them to get every one of them so their is no recurrence. My wife did have a dramatic response to induction chemo after her 1st treatment and she did cisplaten, erbitux, taxotere and 5fu and I hope your husband responds the same way and maybe his tumor can shrink so small that you will be able to have more years of companionship with each other. I will pray for your husband and you, Love Homer
That is what we are hoping for. More time. Just more time. As much as we can possibly get. He will finish four cycles of the carboplatin, erbitux, 5th and have another scan to see if the beast is responding. Meanwhile, he is handling the treatment like a champ and we hope for the best.0 -
miraclesrobinleigh said:Exactly
That is what we are hoping for. More time. Just more time. As much as we can possibly get. He will finish four cycles of the carboplatin, erbitux, 5th and have another scan to see if the beast is responding. Meanwhile, he is handling the treatment like a champ and we hope for the best.
Miracles still happen. When doctors say not curable it means not by humans. I know one person whom the doctors sent home because the cancer had spread everywhere and said he would not make it more than a couple weeks. After six months the doctors opened him back up and coulld not find a trace of cancer. That was over thirty years ago. Another friend was given less than 8% chance of surviving her breast cancer. She has been NED for 12 years. Nothing is impossible for God. Keep the faith.
Praying for a miracle.
Debbie0 -
Robinleighrobinleigh said:Exactly
That is what we are hoping for. More time. Just more time. As much as we can possibly get. He will finish four cycles of the carboplatin, erbitux, 5th and have another scan to see if the beast is responding. Meanwhile, he is handling the treatment like a champ and we hope for the best.
I have been keeping up with your posts and thought I had responded...apparently not. Just know thoughts and prayers have been coming your way from our end here. Ah, and remember the serenity prayer is perfect for this (and pretty much everything else)! Take care.0
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