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

[orphanedhawk]

"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??

[dontworry_behappy1]

What you have said here about your friend and chemotherapy is true.  I know,
because I too am a survivor of both.  

Chemotherapy is never easy.   One is just more excepted and all the bells
and whistles are provide from the get go.  Honestly, it discusses me that
this is happening.  For all you medical professionals reading this post -
step up to the plate and provide the same comfort.  

[maybe368]

I forgot to mention that the nurse tpld me that 90% of the patients refuse the test and take the chemo. I think it says something about our fear of pain, even if the alternative is much worse in the long run,,,Mark

[maybe368]

I was a street paramedic for 22 years and 1 thing I can say is that the worst injured and sickest patients are the quietest. But, if you looked into their eyes, you knew how sick they were. I myself had 24 radiation treatments and it was very easy until about the 17th or 18th, then it was pure heck. The oncolodist came in 1 day and offered me an option, take a Draconian test to see if I had CA below the diaghragm and if no, I would only need radiation. It involved 8 injections between the toes and made the bone marrow draw, without any anesthesia, seem like a kindly caress. I told him that if I might avoid chemo, let's do it!!!...Mark

[julie318]

complaining is healing I'm sure some cancer patients complain too. A forum should be a safe place to complain. Sometimes you get tips on how to cope.

[child24angel]

Thank you!

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

[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.

[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

[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

[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.

[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!

[EyesofBlue55]

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

[EyesofBlue55]

Thx

[blondie717]

bump

[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

[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

[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

[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.

[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

[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

[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

[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.

[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.

[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.

[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.