why do we complain about inteferon and cancer patients don't complain about chemo??

"Chemo is a horrible treatment for many, radiation isn't much better.  I wonder why people get angry about a rough hep C treatment that, to date, is the only chance for a cure, but don't about chemo?"

Someone recently sent the above to me in a discussion.
I thought it'd be interesting to see what you all think??

[willbb]

Hi OH.. I have been fortunate enough myself to have never had to undergo chemo or radiation ,however have witnessed a few family members undergo these procedures and your are right ..never a peep or a complaint from any of them ..ever.

Possibly this...once a person is faced with  these  dramatic treatments for the most part they are in "life saving mode"  meaning a last ditch method to try and prolong life.... To them it seems the will to live is their only focus ...and the pain and suffering they sometimes go through to achieve this takes a back seat.
I wish for peace and comfort to  anyone who goes through that struggle...
Just my thoughts..
Will

[willbb]

After reading your post again..I see I really didn"t reply to the question you asked...  I apologize.... got side tracked  somewhat

Best..
Will

[nygirl7]

NO will I think you got it exactly right I thought all the exact same things.

From what people I have known on chemo go through - it seems all hepc treatments are damn easy the thing is I dont think people REALLY see it as 'saving their lives' as chemo would do for cancer. I doubt faced with stage 3 cancer someone would be so anti-interferon, but hcv patients dont realize how easily they could develop HCC and have cancer themselves if they dont beat the disease.

[nygirl7]

PS I never see you complain Hawkie, in fact I believe you are one of the few folks who understand exactly how important it is to kill this disease regardless of what it is you have to do!!!!

[mikesimon]

I agree.
People don't take HCV as seriously as cancer patients take cancer.
I wouldn't call the complainers crybabies though, because - let's face it - treatment is no picnic.

[nygirl7]

I just received this from someone who wishes not to post, but had a message hoping perhaps we would understand better.

"Please post and enlighten Orphaned Hawk that people doing chemo and radiation do not have the energy or the strength to complain.  They are using everything they have to survive the treatment.  There's nothing left for internet forums or bitching or whining."

[orphanedhawk]

Hmmm. I posted this as something someone else wrote to me in this mornings email.
I thought it was an interesting topic worth discussion.

My friends who've had cancer, including one of my closest who died of it just a year ago, went through chemo.
The one who survived is happy to be alive but the question of why chemo? why radiation? never arose.
Why isn't there research into better cancer treatments?

My thought about the difference may come from the mental side effects of interferon as found on the web site o:f irritation, depression, etc.

To the coward who thinks they have to write via nygirl to me:
It is unlikely a coward can enlighten one who is fearless.
Enlighten thyself.

I came close to dying from ESLD.
According to my surgeon I had 6 weeks of life left in me before my tp.
I know what its like to spend more time prone, exhausted wasting away.

My friend with the tumor undergoing chemo, and I spoke on the phone and commiserated. While I recovered post tp, her cancer returned aggressively.

The great thing is now, I fear not death. I've looked my own mortality in the eye.

NYgirl: In the future tell that chicken to write to me herself.

[GoofyDad]

For the same reason ugly chicks look good at 2AM. Last chance. Hail Mary.

Diagnosed with cirrhosis I had  little trouble getting through tx. And I've occasionally considered chewing off my arm in the morning.

[orphanedhawk]

Will, There is no need to apologize to me ever for digressing besides I started this just as food for thought, it sure got me thinking when I read it this morning.

Mike: I think you may have it right. Although many people act crazy when they hear they have hep C, they don't immediately think of death.

I wonder if the fact that cancer is such an old accepted disease while hep C is relatively new, and still kept in the dark, has anything to do with it, or not.

[eureka254]

I think the largest difference is the acceptance of mortality.  For most folks treating hcv, it's not a life or death choice... suffering with treatment often feels "nastier" than suffering with the disease.  For most folks diagnosed with cancer, it's a life or death decision to do chemo, radiation, etc. or not; suffering with cancer treatment often feels "better" than succumbing to the disease.  

My instincts incline me to guess that you probably complained less about transplant than you do about treatment :).

[Kristina538]

I kept in touch with a forum member after they'd cleared HVC and they, within the year, had to do chemo.   A comment made from her may shed a little light in that there is a lot of money, fund-raising, extra support and social acceptance around chemo for cancer, and cancer has affected more people so more people are willing to be supportive, financially or other ways.

Reading her blog, there was absolutely no doubt that the chemo was very very hard, and I can't comment about the comparison.   But certainly, many folk with HCV on this forum alone are facing a life or death situation and certainly those who have researched know it.

There is a stigma still with HCV - there is not the same level of sympathy, or comprehension of what we're facing when we treat.   God knows, who of us here would've known what we were facing without this forum, and, of course, the differing stages of HCV complicate it.

GoofyDad - there's no such thing as an ugly chick in a happy hen house;  I hope you don't wake up one morning minus an arm :-).

[Kristina538]

AND.... (lol), on the forum, at least, I don't think it's complaining;  it's asking for help and understanding - it's perhaps a little easier for a chemo patient to get that - more health professionals are up to date with cancer treatments than with HCV.

[can-do-man]

My dad did both chemo and  radiation before he died of cancer, radiation was a walk in the park compared to the chemo, he really felt he could beat the odds. I think that would be pretty common in people. If they didn't have that hope they would never do it....... He was so sick from the chemo he didn't even want to talk on the phone let alone mess with the internet

[nygirl7]

I dont think they meant to insult or belittle you in any way, just they were saying on chemo they were too sick to even think of getting on the internet. From what i have seen of some chemo's (and some are stronger than others) if you are going through that and radiation I would imagine it would take all your energy just to keep your peace of mind.

I hope to never find out and make an honest comparison personally, I dont think even after 72 weeks of dd'ing riba and inf (sometimes) that I could handle chemo (but I guess you do what you have to do and try and manage it with as much dignity as possible...which in my case would be very, very little).

Deb

[Susan_1a_CC]

How come so many cancer patients are put on chemo when the docs know the probability of a good outcome is zilch?  Because a person with cancer needs HOPE and treatment gives them that in many cases.  And attitude is an integral part of the equation.

Why do so many on HCV tx complain - we don't feel like we are in a burning building (esld excepted) with the only hope being that of jumping out the window...so we look for a more comfortable egress.

[orphanedhawk]

Sorry to anyone who my rant about the  unknown poster, offended.
Unfortunately between my riba rage and the unidentified source, I went off, having already been agitated.

Kristina: I think you make a very valid point about the acceptance of cancer.
Hep C is  still the hidden epidemic.

[HectorSF]

I guess I will put in my 2 ¢ worth since I have done both. Not sure if it is even worth 2 ¢ actually. Not that my answer is "better" then anyone else.

First, I find it "interesting" that it appears that most people who posted are thinking about cancer as something other people have. Once a person with hepatitis C progresses to stage 4 cirrhosis they have a increased chance of developing HCC (liver cancer). Thankfully few people progress to ESLD or HCC. And with the advent of antiviral treatment even less people in the future will. Of course this is a developed nations concentric point of view. As most people that develop liver cancer in the world who have liver cancer get it because they are chronically infected by hepatitis B.

To go back to OH's original statement.
"I wonder why people get angry about a rough hep C treatment that, to date, is the only chance for a cure, but don't about chemo?"

First IMHO the statement is not true that "we" don't complain about chemo. This forum and the forum for Hepatitis C is not where people with cancer of any sort usually post about experiences with chemo. Including us or our loved ones with hepatitis C who have now developed liver cancer. There are forum for us other places were we get angry, scream, moan and cry about what we are going through. But this is not the place for us to do that. While we have been through many of the same experiences living with hepatitis C, when your doctor tells you that you have cancer, it is a moment in your life that you will never forget. There is still a association in society between cancer and death. Even though in 2012 many/most cancers are managed successfully and most survive it especially if caught in the early stages.  For example; Colorectal Cancer which my mother has had recently. There is now a 90% of survival rate over five years thanks to the 40% drop in deaths since the 1970s. Or Breast Cancer which occurs mainly in women but men can also have breast cancer 9 of of 10 people who have been diagnosed with breast cancer are alive in 5 years. Of course this is due to the many wonderful advocates for breast cancer who have put the issue front and center at least in the US. Since unlike many cancers liver cancer still has a 100% mortality within only a few years if not managed properly. Again I find it curious that in all of these posts except for Eureka's, liver cancer was never even considered as "real cancer".

I don't want to say any more about the data because I don't want to take anything away from the brave people that have been through suffering and pain I can not even comprehend. My heart goes out to all who suffer. Whether it is from any cause. I try to be conscious of the way we/I divide ourselves from others just because their illness for example is from something other than hep C.

I have had my share of orthopedic cancer, hep C, cirrhosis, ESLD, and liver cancer. All I can tell you is suffering is suffering whatever the cause. And I am happy that most people will never have to experience it. Just like I don't want to experience some of the horrible things my friends have and are going through. If I had my choice I would prefer to be obvious to it all. But it is never a choice. It it what it is. So as a responsible adult I deal with it as well as I can with the help of my supportive friends and family. I am just trying to do the best I can and live by my on beliefs with as much dignity as I can muster.

We are human beings and we go through every emotion including angry about our cancer. I try (although not always succeeding) to help others that have cirrhosis, ESLD and liver cancer here. Many of them are frightened and feel alone just like all of us when we first were diagnosed with hep C. We knew it wasn't a good thing to have hep C, but we didn't know how serious it could be. As for being diagnosed with cancer my experience both times and every time they find a new tumor in my liver is my gut feeling of dread and then the shock comes over me. Before I can ever even think about what has happened. It is a feeling before it is a thought. And it is not just my experience. I have met many people with cancers and they have all talked about that same feeling of dread when they first find out.

Sorry to go on tangents...We don't accept our cancers and suck it up and say doc I want chemo hit me up ASAP. No that is not reality. We are just like you. We pretend is can't be true, we say why me? We beg, plead, cry and a million other things but in the end many, not all, decide we want to live and if we have to suffer in the short term (chemo)for a chance of surviving then it is worth doing. It ain't fun. It is not something a person would choose to do. But when it comes down to life and death many thing look different when you are there. We unfortunately have no other options. We tied whatever we could first, and failed before we choose the chemo. It is usually our last hope. It is either chemo or death. For myself it is not really choice. I still have the will to live. And if I have to walk through hell to live so be it.

So I hope someone will get what I am saying. This is only my opinion based on my own experience. I defer to Eureka to speak for herself and must say she and her husband some of the most amazing people I have ever known in my life. And I can only feel lucky to ever have known them. There are positive things about having cancer...though I don't recommend having a potentially fatal cancer in order to appreciate the beauty of each minute of life and all the wonderful and all the wonderful caring people that have supported me along the way.

And of course you, Orpanedhawk, are an amazing person yourself. A hero in my book. What you have been through I can only imagine and actually I can not imagine... but I feel for you, feel empathy, care for you and admire you. And now you are taking on hep C again and beating it. How amazing is that? Give yourself some appreciation and hugs for all you have accomplish. Not everyone can do what you have and are doing. You didn't have a transplant because you wanted to. You had too. To continue living. Just like us with cancer. We do chemo because the alternative is worse. It is not a choice between good and bad. It is a choice between bad and worse. There are no other options. So we do what we have to do.

I guess this is as good of time as any to update my Medhelp status as of now. As some my know I had chemo December 12th for my liver cancer. I have received word that not only did the treatment work but it appears that my tumor is completely gone. This only happens in about 10-15% of cases. Wow it is more than I even hoped for. I am so grateful to my team of docs at UCSF. No words can express my gratitude for the care they have given me. What can I say? I don't know. but I want to hug them all and will get the chance very soon...
For all the relief and happiness I feel I was also devastated to learn that I now have another tumor in another part of my liver and will behaving another chemo treatment probably in the next few weeks. This is what we with ESLD and liver cancer call refer to as the "roller coaster" of emotions we go through living with these diseases. Just when you think you have  your opponent on the ropes, a right upper cut comes out of nowhere and you find yourself down on the mat and trying to get back up to your knees before the 10 count. Hmmmm I guess I have some concept of what Muhammad Ali's opponents feel like. When he gave them the "sting like a bee.."

Hector

[Idyllic]

Congrats that your tumor is completely gone! I had no idea the stats were as abysmal as that. You beat the odds and lived to tell the tale. Your observation that with cancer the live or die dynamic is in general more prevalent than it is with HCV is a poignant one.

[child24angel]

Hi Hawk:)

Hector,
You will rid the new tumor as well. You will!!
Sending my very best
Elaine

[Dee1956]

I am so very happy that your treatment has worked,  Thank you for sharing that wonderful news.  I have been thinking about you and wondering how you are.
Thank God, you are on this forum, you give people information, hope support all the while fighting your own battles.  I really admire your strength, compassion and your willingness to share with all of us.  This forum keeps me going with all the support advice suggestions.  I hope this will be the last time I treat and can go on to help others here.
((()))
Hugs all around
Dee

[mikesimon]

Congratulations!!!!!!!!!!!
And good luck!!!

Mike

[nygirl7]

Oh Hector oh Hector I'm just overwhelmed with gratitude that the chemo is working. I do believe, as always, in the amount of strength you have and that you will win this fight.

That is just the best news I have seen in a long long time and I am truly happy for you.

Congrations keep it up my friend!
deb

[Dee1956]

Hi I was told that the treatment we are on is chemo, chemo means chemical therapy.  Was there a study done where they discovered that we complained more than people with cancer?  When I was dx in 2007 I did think it was a death sentence.  I treated because in my mind the alternative was death.  It may not be that way for everyone, perhaps some people had no symptoms or damage so they wonder why they started tx in the first place.
I do think there is the matter of support. In my case those around me do not consider HCV to be life threatening so they almost think my tx was elective.   Before joining this forum I tried to find a support group in my area and there was one.  I opted to come here, not only to receive help but also to give help, maybe provide some comfort, experience etc.  Perhaps the person who said this to you doesn't realize that there are many different type of cancer so that the cancer forums are  spread out all over the forum whereas ours is concentrated to one place?
Interferon is used for cancer;  I know a woman who after going through several different forms of chemo said that the interferon was the worst due to the mental side effects.
Speaking of mental side effects, my answer may not make much sense due to the mental side effects I am experiencing :)
I apologize if I am not clear.  There are times I can not get the right words out and so then offend
Thank you for this forum, I do not think I could have done this tx alone.  I have one person helping me through this tx.  Thank God for him

[orphanedhawk]

You continue to amaze me. Your clarity despite your condition is impressive.
Thanks for your kind words. I've taken them to heart beginning to see there are more ways to view an experience, including my own, than my way!

As delighted as I am to know the one tumor is gone, my joy for you is tempered by the realization that you have yet another one to fight off.
Believe me I understand how tired you must feel.

I know I speak for many here when I say, we are rooting for you.
Go get 'em~
I expect to see you over expresso in North Beach in the future, with your healthy new liver and hep C free, like me:)

[libzo2]

I agree with Dee about your valiant contributions.  I have learned so much and continue because of your generous spirit.  You are a blessing for so many.  Channelling healing energy back to you.  This site is about miracles.  I believe.

[frijole]

OH
I was not even going to comment on this thread because I don't know the answer.  But when I saw Hector's good and bad news I had to address both.  I like what Kristina had to say.  It all has to do with the stigma.  How many of us are in the closet with this dx and tx.  Here I am in week 23 and only a select handful know.  So I am almost like an exploding top.  Instead of finding compassion among my associates, I turn to cyber friends of equal bent.  It may sound like we are whining but it is all pent up and comes out here - and I think you all for the opportunity to do so.

Hector, I am so glad for you.  You said you would post to the forum when you were ready but, geesh, guy, this is really buried.  Start a thread on the other side because  many need to know this is possible and will not see it here.  I hope that having zapped one tumor means that your body is receptive to these drugs and you will be able to zap others.  But then again, from what I hear about chemo, you use something until it stops working and then you use something else.   May the force be with you.

bean

[babs824]

to hector first; u are a source of amazing inspiration to all and i pray that u will have continued success. congratulations.
then regarding the difference in how we respond to the two tx; when i had breast ca in 1998, i was so stunned i barely had time to react but felt the choices were limited as was my time. therefore i chose mastectomy radiation and chemo and left no stone unturned. when i chose to treat my hcv a year ago i knew i had the disease for several decades and the choices were not so limited. i knew if i did not treat eventually i might die from the disease. with the ca there was no doubt that i would die and probably sooner rather than later. i got lots of attention of course and did not have to hide my diagnosis from anyone. probably could not have as i weighed 93 lbs and had no hair or lashes when i finished. i do not see the hcv patients as complaining just sharing experience strength and hope. the symptoms vary alot. with adriamycin cytoxin  for breast ca everyone feels
pretty bad and looks worse.(few variations) just my 2 cents. for a thought provoking topic, babs
c



o

[James10500]

To say the cancer patients don't complain about chemo is ridiculous.

As Dee says Interferon is used for many types of cancer.  I have a friend who is going through chemo now. He skis 4 days a week, I couldn't ski at all no strength at 10-12k feet. So lets let assume that "chemo" is worse for everyone than interferon is.

Also as Dee says chem means chemical therapy, it does not mean cancer drug.

[orphanedhawk]

This question was posed to me from a staff person on the medhelp forum.

I figured they have more experience with what a large group of people do than I did in my limited experience of knowing a handful of people who've had cancer.

[Gerbils]

My Dad has had a metastic cancer for about 5 years and had various surgeries and chemo many times over the past few years. They have removed parts of his lymph nodes, inner parts of his mouth, and lung. He currently has cancer in his lung, liver, and rib bones. I have listened to his comments (I don't want to call them complaints) and noticed that his chemo treatments seem to produce symptoms that were very similar to my peg injections. (He does not know that I had hep c and treated for it.) I have also noticed the great desire he has to continue with chemo even though he has had many other serious illnesses (pneumonia at Christmas, a bleeding ulcer at New Years, etc.), he can't wait to get back to more chemo. A long time neighbor of mine passed recently at age 53 of throat cancer. He wanted to do more chemo but the doctors wouldn't allow it. He died shortly thereafter. I think the reason for the desire to keep doing chemo is that (at least in these two cases) it was the only way for them to fight the cancer. It gives them hope.

One more item to clarify was why I don't want to call my Dad's comments on his side effects complaints. I don't see them that way anymore than I see people on the forum's comments about their sides as "complaints". These comments are made because honestly we know we are putting some serious medications in our bodies and they are causing physical ailments and changes that are distressing and sometimes frightening. The comments we make about sides are a chronicle of sorts of what is happening to you.

Best wishes everyone,
G

[1oftheclub222]

I am so happy to hear that your tumor is completly gone!  That is great news!

[Interfurgen]

I wine like a new puppy, his first night away from his mommy!!!

[kmatucson]

I have been thinking about this post for awhile and just had to respond.  I don't think people are necessarily complaining.. I do think people with Hep C are frustrated and do not have many places to go to vent or get support.  If you think about it, there are entire wings of hospitals, and entire centers devoted to cancer, offering the best in treatment and support.  However, there are no hospital wings or centers devoted to Hep C, and support groups are few and far between.  When you read through the posts on this forum, it seems that we all get different advice and direction from our doctors.. no consistency.. and most get little support for the side effects.  Which has been my experience. So, we rely on each other, cry on each other's shoulders, support each other, educate each other.. and try to make sense of all of this together.  The Medhelp Hep C support group has kept me going and I have learned more here than from my doctors.

Hector, I'm sending positive thoughts your way for the newly found tumor. Take care my friend.. We are all here for you.  

[Dee1956]

I have thought a lot about this question.  Perhaps it is the unknown, when a person says "I am on chemo" right away most people know what that means.  When you say "I am on treatment for Hep C"  there is such ignorance that there is not a lot of support.  People that I know think that my tx is like elective surgery, they do not understand that if I do not treat I have cancer or ESLD to look forward.  They say "You look great, why would you want to poison yourself?" So, while others might have family and friends to vent to about their cancer, treatment, side effects; speaking for myself I just have what I call my Med Help family who I come to when I am feeling uncertain, afraid and have questions.  (I never saw it but there used to be an ad that said "if what was happening on your insides could show on your outsides, this is what HCV looks like"  The ad was pulled as it horrified people too much.
This site has kept me going through treatment, has helped me with my fears and insecurities.  I will always be grateful to everyone on MedHelp for their generous spirits, their kind caring, comforting words and so much more.... For me, the hardest sx to deal with is the mental which are well documented.:)
Thank you all, may we all obtain SVR.  Hector, again, so happy your TACE worked, Bless you my friend
Dee

[diesel1959]

Hector glad to hear the good news! You have been a positive influence to me and many others and I hope that comes back to you 7x70 x7! I have looked at this treatment as something I had to do or very shortly it would be cancer. I was glad to find this forum to vent my anxiety and frustrations with side effects because of the stigma surrounding hepc. Besides my Dr and his staff I have only told, my brother, sister and father. I am fortunate to find this forum to vent and receive some understanding from others that have similar frustrations and side effects as well knowledge about this life threatening disease. I want to say to who ever I might have offended if they think I am a whiner because I came on here to vent a little i apologize for
that. But we should have a place for all of us to vent , Hector kick A**  

[medicmommy]

Hey everyone! It's been a while since I poked my nose in here, and this thread caught my eye. I think Dee1956 touched on something about the mindset of Hep C treatment VS cancer treatment. With Hep C treatment, most have time and choices, whereas with cancer treatment, the urgency to be rid of it is the focus. With Hep C, declining health and death may look you in the eye, but with cancer, it is snarling and has bared teeth.

For myself, I have seen people die from the complications of Hep C and they can result in a very slow, painful, ugly death. When I was told I had it, I saw it as a death sentence. Sadly, even as a healthcare worker, I was painfully underinformed about Hep C and bought into the stigmas. I even went through a brief grieving process and I felt contaminated and isolated -until I began to educate myself.
Hep C tx is nothing to mess with and it requires determination to complete it. I am happy to say, even though I have a few lasting issues from the treatment, I have been Hep C-free for nearly 4 years. Yes, the treatment IS chemotherapy, and no, I don't think those who go through it are whiners -I think they are just lucky enough to not have to face the thought of imminent death if the treatment doesn't work. :) ~MM

[sunqueen]

It was probably a matter of time before I chimed in.  I don't remember the month or day when I learned I had HCV.  The only thing that sticks out is that they told me over the phone.  Those words "you have cancer" will be with me forever. I remember the date, time what I ate for lunch and what I was wearing.  It didn't seem real - like they were telling me about someone else.

I didn't talk much about being diagnosed with a late stage cancer here. It's a Hep C forum. My HCV Tx was rough but mostly doable.  I worked 5months and could'nt do the kind of work I did anymore. Two months after treatment, I was back to work. I sure whined a lot but I also laughed my bumm off. I was able to shop, cook and maintain my hygiene.

The cancer was a different story. First I lost my Breasts, then they told me that they took out all of the lymph nodes on the left side. This has caused me constant h-e-l-l to this day. The chemotherapy was awful and the radiation was no picnic. My doctor wrote a note stating I can never go back to work. Cancer changed my life completely and entirely. I'm grateful that I was able to go through it with the support of family, friends and co-workers. I didn't reach out to other cancer patients/survivors until after treatment was over. When I needed help, people dug deep. I was spending my entire ST Disability check on co-pays. I needed compression sleeves and gloves because my body no longer knew how to move fluids from my fingers, hand and arm to be processed for elimination. I was blown over by the high degree of support available.

I live in constant fear that it will come back. My odds are poor since it was detected so late. I live life fuller. I will be considered terminal if it comes back. i'll do whatever they ask and when I've had enough, I'll raise my hand and cry uncle.

I'm alive and kicking for the time being. I was supposed to have my long-awaited hip replacement on Monday. I was in pre-op with all of the lines in and heart monitor clips in place. The anesthesiurologist was propping to give me the twilight drugs when the surgeon cancelled because I have a UTI. Well it's been a long and interesting journey.

Must sleep now. Love and blessings to so many familiar faces.

[nygirl7]

Oh Sunqueen I saw your name next to MedicMommy's and thought wow a revival and was happy, then I read your post.....and now my heart is aching.

I am going to pray for you big time and send you the very best heartfelt thoughts that I can.  I had no idea you were going through all of this, you were so brave and never let any of it come out on the forum that I can remember.

All of my best wishes, prayers and thoughts to you!!!!!!!!!!!!!
Deb

[Idyllic]

I really got a lot out of Hector's post but still just in thinking of the time I worked on the Oncology ward when I was in the Military and then thinking of all the folks who have treated for various types of cancer as well as those with HCV, I honestly haven't heard many people compare the two or complain the way seems to be implied in the question.

[orphanedhawk]

Thanks Idyllic. The idea of the post wasn't to compare treatments but the fact that hep C patients complain about interferon tx, asking for better options.
Whereas as difficult chemo and radiation therapy is, you don't hear the same reaction by cancer patients. They aren't saying, 'why hasn't something better been found to help us?"

How many posts do we see asking if interferon tx is worth it? How many posts do you think crop up on the cancer forum asking if chemo is worth it?

Although the discussion has digressed,  I'm glad for anyone who's been inspired to share their story even if it doesn't answer the question.

[sunqueen]

Deb,

Thanks so much for your kind words. All of my tumor markers look great, so for now, life is good.

<3

I can't speak for other cancer patients, but I do know that complaining does not help one little bit. I had a boob voyage party and we passed shots of buttery nipples. It was a lot of fun. My best friend was one of my greatest supporters and then was diagnosed with breast cancer four months after me did not handle it well. She was angry and pretty intolerant of things people said. Maybe it's the social worker in me, but I took other people's remarks in the spirit in which they were intended and didn't look for malice in everything.

I complained a lot when my eye lashes fell out. You wouldn't believe how much they prevent bugs from flying into your eyes.

I met so many amazing people in the infusion room. One old snowbird was telling us about an experience he had at his regular hospital in NYC. He got off the elevator and went through the double doors, as always. He looked around the room and saw that they were all children. He had gotten off on the wrong floor. He said it was the only time he ever cried in all of the years of chemo and treatments. It put things in perspective.

My experience with cancer patients/survivors is that many of them tend to be more positive. With HCV there is the wait and watch option that many of us have, and we elect to treat anyway. With cancer, things happen so quickly that your head spins. They don't even give you a day to think about it. They want to know what they're dealing with and then develop the best treatment plan. There are biopsies, pet scans, bone scans and consults with all sorts of "team members" and then the next thing you know, you're having surgery and chemo, then radiation. They don't give you much time to think, and you certainly don't get a lot of choices. I was finishing chemo when the full impact of everything hit me. With HCV, I had 6 months to brood and ponder my options. With cancer, it was two weeks from the biopsy that confirmed the tumors were cancer, to mastectomy, with all of the other tests and consults in-between.

I don't know if that helps answer your question.

[Jillybean65]

People come here for support, and to put them down for looking for that, just doesn't make sense to me.  Everybody's experience is different.  For someone, who ended up with little side effects, to put down those of us who ended up in bed, unable to work, and feel like it took everything they had to make it to the finish line, just, well, I'm going to leave it at that.  My dad in May of last year was dx with liver and pancreatic cancer.  I lost him during my treatment.  I was able to spend very little time with him, and I regretted doing tx at the same time as him, but he wanted me to go forward.  Our side effects were very similar and we talked with them on the phone a bit, but honestly, neither of us felt up for much talking.  When I could, I went down (1 hour away), and layed on the couch on the other side of him, and a week before he died, 10 weeks into Inc, layed on the floor with my arm on his arm, to let him lk now my presense.  It sucked big time.  I just finished tx on Monday, and am now dealing with the emotions of losing my Dad.  I'm hoping I never have to go through what he did.  Images in my head that I don't want there. Yep, I know I need counseling to deal with everything that has happened.

[nygirl7]

Oh Sunny.............you are just such a light you just made me cry again and realize that as bad as 'problems' seem - there is always so much worse. God bless my friend it is so good to see you again.

Deb

[orphanedhawk]

Thanks for your story and input.

I've had friends with cancer who've had time and others who haven't.
Some who beat it and continued life never bothered by it again, and others who've passed on.

Perhaps the main difference is many people with hep C are able to live life never experiencing complications from the virus.
With cancer, people feel an immediate death sentence.

You chose a good username as your smile and words convey your sunny uplifting attitude.

Wishing you contentment~
OH

[jules2551]

I definitely don't know the answer to this question.  I only know from family members in the past and what I have seen recently.  Every week I go to the hospital to have a pint of blood removed due to iron overload and the hemotology and oncology are combined.  When I walk in there are probably 15-20 at one time doing chemo for various reasons.  Every time I walk in they say hello to me and have the most upbeat smiles on their faces while their bodies are soo frail.  Honestly they absolutely amaze me and also the nurses that run the department.  They are always cutting up, laughing and smiling.  Truly amazing.  And here I am complaining that I have a large needle in my arm to remove blood.  Yes it hurts but it's nothing compared to their daily thoughts and pain.  They are probably closer to knocking on the pearly gates than I am but who's to say I am not next.  Maybe I am still in denial.  I only have Hep C.  It won't get the best of me!  I'm only 49 was an athlete.  I've always loved a good competition.  But a competition of life?  Who knows that could be me next.

How would I act if I was doing chemo?  Probably the same as my mother.  She had lung cancer and it was not a pretty sight.  But she always had time for a smile or a good laugh.  That is one thing in life I will never forget.  

I firmly believe as we get older, wiser, and dealt some really crappy cards, we ALL make the best of a bad hand.  I think if we were dealt those cards we would not want "anyone" to feel uncomfortable including the nurses who take care of us.  I feel it's just our nature in dealing with our feelings.

Yes I ***** and complain to myself that my numbers are not going the way they should but ya know, it could be a helluvalot worse.  So I am gonna stop bitching and complaining.  

Sorry about the tangent!  

Jules

[Mary4now]

Hey, Hector when you have that espresso in North Beach say a little hello for me,, I love North Beach,
Alas,,, Its nice to have support and love from each other.. Please be well, and the realization of impermanence has rocked me to my knees..
live each moment as if it were your last, savor it, and think good thoughts.

[DoubleDose]

All I can say is Holy Heck!!!!  Way to go, and congratulations!!!  What a fantastic outcome!  I am very happy to hear your news.  First time on the social site, and I saw your post.  Keep on kicking butt!  And may you continue to recover and have a great life.  

DoubleDose

[belle19]

so happy to hear you've gotten rid of the tumor.  i'm sending you prayers and hugs to get rid of the new one.  you are such an inspiration to all on this forum.  god bless you hector.  belle

[strator]

Thank you Hector, and I wish you and all the best. I just happened to look in today. My 36 yro daughter has done chemo for her MDS which is a blood cancer leading to leukemia. She has very terrible asthma and diabetes so they treated her aggressively right away. She has done chemo twice and does not want to do it again although they tell her it may be the best route. Last week she had a minor heart attack while in ICU for her breathing and blood pressure. She is an absolutely amazing inspiration to myself and all those who know her...but I assure you, to those she knows and trusts she is just as open about the brutality of her tx as any of us are or were on here. She calls me many nights crying because all she wants to do is go to her daughters ball game, go to the store w/out having to wear a mask or or not have her wonderfully supportive boyfriend hearing her vomiting in the bathroom in the morning. When she was first diagnosed a year plus ago, she told no one at all including her children and man even after she had started chemo. Eventually the gig was up when her boyfriend thought she was cheating on him because she would be MIA every week and was getting irritable & sick every am. He had previously had a vasectomy and thought she was cheating & pregnant. I can not imagine how hard it was going through it alone.
Her life did not get better medically after she told us all, but spiritually and emotionally she has risen to levels of inspiration I find mind boggling. A lot of that has come about because she does open up and tell us, and people send her love and support. I have used every bit of strength and experience this forum and tx in 2006 taught me to do what I can to help her...I started by telling her that 'real' tough guys, are brave enough to let the world see how vulnerable they are and reach out and ask for help. That's what people are doing here, reaching out for help, acceptance, love and inspiration. I suggested medhelp to my daughter but she has found a wide support group, mixed with cancer patients friends and family, in her own social media way. She is hoping to get into a trial just like others do here. She would love a magic wand to be waved, just as we do here. She will fight her way through with all of her mama bear instincts to stay alive for her 16 & 11yro daughters. She had just gotten her teaching degree a year before dx and wants to teach.
I have a few friends that are battling cancer, they also are inspiring, and also get through by opening up w/other patients, groups, or friends.
Both chemo and hep c tx are pretty ugly; disbursing the challenges you face amongst a support group doesn't lessen the grace and dignity of getting through tx or chemo and fighting for your life. It merely states that I am a human being, I need your help, 'we' can get through this. I have to add that when i was dx they told me I already had it 35 years, so the urgency to acceptance was not the same as a cancer patients.
I have no doubts about the brutality of chemo. I also know first hand how our tx can wear you down over time, or suddenly one day.When I was on tx someone that had had a transplant, possibly mike, related his wife coming to the hospital and complaining about a headache. When she realized and tried to apologize he reminded her there is no pain like your own pain. We have to fight our way through that first, to see and help others. I know that I react worse to small broken shoelaces, somedays, then the larger things like my daughters health. When you are not feeling well it is even harder to use your best reactions.
I also remember a discussion here once about it being so difficult somedays on tx because we may look relatively healthy but inside we are nauseous, aching, afraid, and unfocused yet people can't see it on us. Whatever the reasons I am grateful for this forum, I am grateful I am not going through what Hector, my daughter or others are going through...but gratitude is not my first reaction when I wake up in the morning in pain. It takes work, and part of that work in the tx days was to get on here, get mys tuff out, try to help others with theirs, and because of that I have been able to be here for my daughter on the journey she is on.  I love you all and thank you for letting me be here.
Don

[blondie717]

bump

[EyesofBlue55]

Thx

[EyesofBlue55]

Hoping I can not turn into  too big of a crybaby!!!!!

[blondie717]

Hey Cindy get ye back over dar to where I banished (the)ye.lol. and ya better be reading all that rap-ca I been e mailing ya!

[Trish77]

Interesting topic, OH.

I don't think it makes much sense to compare.  Many of us came here...and come here...because this is the place where we can say how we really feel.  I didn't say a whole lot to anyone outside of this forum because they were unable to understand and it only made it worse for both of us to hand them a situation they didn't have a clue how to deal with and to end up giving me responses that were not helpful, so I limited what I told anyone outside of this forum to a very narrow set of people. I can imagine that people on chemotherapy for cancer pick and choose who they share their struggles with and that their greatest comfort is to be able to share them with people who understand the most.

I don't think it helps to make people with HCV feel like whiners and with all due respect, I think the person making that comment is lacking in insight.  Treatment can be rough and downright scary for some and people need a place where they're free to talk with others who understand what they're going through.  This place has been it and is it for many of us.  Treatment centres must recognize the value of this kind of "patient-to-patient" support as I know one of our major hospitals here has set up an online forum that allows their patients to interact with each other.    

HCV is not cancer.  However, it IS HCV.  And it can get to cancer if it progresses, as others have so capably pointed out.  It has it's own set of challenges.  And we do better when we can talk about them with each other and support each other through them.  That's a good thing.

[child24angel]

Hi, I read your post about your daughter and you have my
sincere sympathy.  There is nothing in this world worse than that
of losing a child  or watching them go through cancer or  HCV TX.
No matter how old they are they're still a part of you and they have
your heart forever.  

May she rid this cancer and be able to be with her two children, BF and you and live a long , long life.

I found in the darkest of days my son would call or email me and joke around
even till the end.  I don't know how he did it.  We spoke or seen each other every day , he knew how sick he was and felt, he knew the end might be near yet like your daughter kept fightiing, he cried maybe twice, that I seen.
I know how hearbreaking it is for you, there is nothing that can or will ever compare and yet we somehow find the strength to help them through.

Like you I was there to listen to help him on so many levels.

Cancer or HCV...both have unique complications and every one is different.

I wish you and your daughter inner strength, love  and prayer.

PS cando wants his allowance:)

Many hugs
Elaine

[Willy50]

Speaking of chemotherapy, this is a utube presentation of an alternative therapy to chemotherapy.

http://www.youtube.com/watch?feature=player_embedded&v=1qG_ZWs04es
(1 hour 45 minutes)

I don't claim to know the validity of the treatment, but it was a very interesting.

It seems as though they have a cancer treatment, which appears to work, which isn't being contested that it works, but that it's progress is being hindered or possibly even stopped, if possible.

Imagine, a cancer treatment with no or few side effects and a better cure rate for some types of cancers being stopped.

For those interested in chemotherapy it might be a worthwhile viewing.

It appears that this form of treatment has now advanced to Phase 3 FDA trials;
http://www.burzynskiclinic.com/clinical-trials.html

It is my hope that treatments for HCV and cancer will soon become easier.  This looks very hopeful for some cancer patients.

willy

[strator]

Hugs and prayers right back at you. Tell Can-do the checks in the mail..every so often it comes back with a note...'no can do.'...I keep telling them yes he can, send it back, he is suppose to be in his room.

[child24angel]

Thank you!

Can do! back to your room!!!
and... the checks in the mail:)