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I need to ask. Is it the treatments we go through to live causing more deaths then the cancer itself?

Annabella Rose's picture
Annabella Rose
Posts: 59
Joined: Jan 2015

Most times when I hear people passing on from cancer, it's actually the treatment, chemo, radiation, complications from surgeries that  caused their death before the actual cancer.

I'm going for my first follow up check with my oncolagest on Tuesday. I've been putting it off because I don't want to keep checking for cancer. I don't think I'm capable going through the surgery, chem and radiation again. I believe my husband had a nervous breakdown. It's so upsetting to see him this way. This should be a time for thankfulness and enjoying my strength coming back. But it's not. I feel resentful, scared and hurt.

Hybridspirits's picture
Hybridspirits
Posts: 209
Joined: Nov 2012

I have asked my gyno/oncologist this same question. While she couldn't directly say yes she agreed that the treatment can be very rough on the body and cause compications and serious issues unrelated to cancer.  It is so hard to get the balancing act as everyone is so different and the responses are all individual.  What i was advisd is to always make sure we take care of ourselves,  keep our nutirtion healthy,  immune system at peak so that if we do need to get additional treatment our bodies will be there as strong as possible.

I do find that adding a naturopath/oncologist is a nice balance to helping us get there.  They test our bodies from prevention while our medicatl dr's many times wait for the disease and treat that.

But I agree I have been very saddened with the recent passings of Jan and Roe and many times can't wrap my head around it. 

Just my thoughts and what I have foun

Sharon

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1479
Joined: Jun 2015

I have not yet started my treatments. And, I agree it is scary. However, I think they do buy us more time. It is my understanding that there is always a few days of angst, fear and resentment with each follow-up post treatment. Because it brings up all of those doubts again. While I can't offer any personal coping experience, I can say that reading the posts from our friends on this board is very helpful. One of my sister's doctors told her.... We all have to die of something.... While we don't get to pick what, how or when we die, I think we must find a way to live with this and thrive. Otherwise, what is the point?  Life is precious.

I'm sooo sorry about your husband. I really do believe that this is as hard on our caregivers as it is for us. Is there an opportunity for both of you to go to a support group? Or get counseling? No one needs to fight this and deal with it alone.

I'll pray for you to find the strength needed to get beyond this part!

Sending lots of love and hugs,

Cindi

Sandy3185's picture
Sandy3185
Posts: 228
Joined: Oct 2013

i am not going to lie, surgery, chemo, radiation-treatment is a *****! In my case it took about 6 months altogether. I am now 14 months post treatment and, so far, NED. Was it worth it? I think so. I have had some lasting side effects but in general I feel great! I am enjoying life, seeing my grandchildren grow and hoping that I will not have a recurrence.

i know we each come here with very different circumstances. You have so many physical problems that complicate your treatment, but don't give up! Surgery alone is only an option for those who are stage 1 and have no UPSC or other aggressive forms of cancer. Try not to anticipate the worst,(easy to say hard to do I know!) But life only comes around once for each of us and we need to take it in hand and live it. You are alive and, God willing, you will get better! Your husband needs you now and you need to find a way to support him and let him know that you are getting better and need him beside you. You have dealt with so much in the past, don't lie down now and let cancer win.  Sandy

AWK
Posts: 364
Joined: Mar 2013

And wanted to give it some thought before I responded.  It is a great question and one I think we all mentally are aware of at some point.  I was diagnosed in Feb 2013 although my official Dx was April 2013.  Stage IIIC UPSC.  I have gone through the extensive surgery, six carbo / taxol treatments, 28 radiation, three brachytherapy and at my first three month checkup mets were found.  My disease was now defined as progressive due to lack of NED.  a couple of things or ground rules we decided upon at that time.  I was ready to fight but I needed my doctors to believe in me and the fight.  They did and one reminded me we are a statistic of one.  I have a certain quality of life I wanted to maintain, interest in living with cancer was my goal and still is.  They agree.  I am open to trying anything with the goal of the effects being temporary; but when the treatment starts overrunning the disease and can't be controlled then we move on to something else or nothing.  Finally, if the disease continues to progress we keep searching and use this to  Benefit others but we stop if the disease can't be stabilized.

i have been treated with Doxil, avastin separately until new progression occurred.  Stability has been the main thing for me over the last 18 months with new growth resulting in new treatment.  I am now in a clinical trial again with the first goal of stability, second goal of reducing the disease.  My doctors are very clear on my wishes and as I moved to this new dr my oncologist made him aware of our ground rules.  It is all about quality of life for me.  And yes I get sick from the treatments but I do recover and see friends, ride my horse, see family and live fully.  I just went on a leave of absence last month from work but worked from December 2013 until July 2015.  

it has been hard on my husband and took time for him to learn that I need his input, understanding and participation.  Some days he would like to just ignor all of it and others he is mad or upset.  He is grieving I think.  but he is wonderful too.  

I have never asked about statistics nor prognosis.  One of my doctors told me I am a statistsic of one and I agree. He has always treated me, the person, not the disease.  

Sending hugs and prayers.  It is your journey!  Anne

Editgrl's picture
Editgrl
Posts: 903
Joined: Jun 2015

Like Anne, I wanted to let this percolate in my brain before I responded.  Though I am new to my own cancer journey, I have shared the journey with my mother, my ex-husband, 2 boyfriends, a friend.  Looking back, I saw some treatments that I now think were unnecessary, futile and had a negative impact on the quality of life that remained.  I also saw treatments that reaped years of new experiences and memories that wouldn't have been possible otherwise.  

I truly believe that we are on the cusp of new treatments for cancer that are less virulent than what we have now.  In 15 years, maybe sooner, I think cancer treatment will look very different than what is the current standard of care in the US.  But we are not there yet.  So what to do in the meantime?  For me, personally, I think it is a matter of weighing the bad against the good. I am not looking forward to chemo, and the prospect of pelvic radiation scares the hell out of me, but at the moment, chemo seems to be a way to at least buy some time.  At each point in the treatment, I have the option of stopping, re-directing or continuing on. We must never forget that we do have that power and control, no matter what our doctors say.

One of Anne's ground rules resonates with me:  "When the treatment starts overrunning the disease and can't be controlled, then we move on to something else or nothing." Where that point is is something everyone has to decide for themselves.

I hope you continue to fight to live a good life, with or without cancer.

Chris

Lily_Anne
Posts: 39
Joined: Aug 2015

Following surgery I made the decision after one dose of chemo that it was not for me. I had a very indepth discussion with my oncologist. My blood levels before dose two showed dehydrated kidneys, so the dose would be reduced, however something did not feel right, so I arrived armed with many questions. I asked was the chemo a risk in itself, she said of course because it is effectively poisoning the cells. I asked if I was tumour free could the chemo create new ones, she said yes. I asked if the chemo could kill me she said yes. I also asked how many people who refuse chemo go on to live a good life, she said not enough people refuse to warrant a study. That most prefer to follow advice and many want anything rather than nothing. So I said I would take a chance. I have had three years with a good quality of life, disease free. I now have a raised CA125 level but the scan shows no recurrence. I am awaiting a further CT scan to confirm. I would not have given up those three years even if I had the chance again, because there are no comparisons to determine whether chemo actually makes enough of a difference to risk it.

 

I know we are all different and if I hadn't read everything I could and evaluated the good and bad I probably would have jumped on the roller coaster.

 

Just my thoughts

 

LA

molimoli
Posts: 514
Joined: Aug 2014

Lily Anne, I too  had surgery 1 year and 4 months ago, I refused radiation with absolutely no second thought about it, I also refused chemo with,very, very last resort thought in my mind.Then 9 months after surgery mets showed up in my pelvis ,I spent many months fighting to have them taken out surgically but oncologists refused with not much info re:reasons, I now have a buyable  possible reason which changed my mind about surgery some .However !st oncologist told me only about 25% of the people may get  periodic reprieve from taking Chemo and or radiation.The other 75% will progress  Not good enough result for me. I will get result from  scans done last week and will see what happens next based on more mets or not.

I have not read about anyone else that refused both line of treatment. I admire your courage,I really don't know if we should be tapping our own shoulders or if we should be fixing to cry.I have always hated  the chemo's side effects on my family and friends and vowed against it  long before my cancer reality but wow ! do we just not do anything  I am big on quality of life ,since this is not curable shouldn't I just enjoy life  and try other treatments that is less harsh on my system? this question is a constant in my head.

I remain  respectful of the fact that many ladies here are benefitting  from their treatments in many different ways. even just the peace of mind knowing that they are being proactive  and doing their best to fight with the only tools offered by the powers that be , in other words they chose not to be sitting ducks. For what it's worth, I pray that we'll all be  blessed with remission for many more years. I know it's only one brilliant scientist away. Heads up, stay strong.

                                                                                                               Nuff love -Moli

cleo
Posts: 145
Joined: Sep 2009

In 2007 I was treated with radiotherapy only for Grade 3/4 MMMT.  Many affected lymph glands were removed, the bladder also had tumors, and I do have slight left leg lymphedema.  I was not given the option of chemotherapy and was told that it would be palliative treatment should secondary growths be found in other areas of the body.   I know how fortunate I am but also wonder if I had more strength to combat this hiccup in my life because my whole body was not weakened.  When I first found this site I thought that my treatment had been wanting but over the years I have many question marks re the chemotherapy road.

I was closely monitored for 5 years and waiting for results is rather nervy but it does get easier.  My husband aged visibly and I don't think that he ever recovered full health as he was an 'inward worrier'.  Families do suffer.   Be positive and I wish you well

 

molimoli
Posts: 514
Joined: Aug 2014

I am now really curious  about others on the board that has not had the usual treatment.I hope you stay ned always.  I really dread  stripping my body of all it's defences ,then say" fight"

Every worrier needs a warrior -comforter.I wish your hubby renewed strength and peace of mind. Blessings. Moli.

Lily_Anne
Posts: 39
Joined: Aug 2015

There is no evidence to confirm that chemo post surgery will delay a recurrence. The board that I belong to on Health Unlocked sees many women who have had surgery followed by chemo with recurrence in a very short space of time. There is research that says chemo can delay the onset butthere is also research that sees no difference in time scale, this was on mice though! Iguess our bodies all react in different ways, but I honestly don't believe your reluctance to have treatment is reflective of your current disease.

I wish you well in your fight, are you following the rainbow diet, taking Tumeric and having mindfulness sessions?

LA 

Cucu me
Posts: 214
Joined: Apr 2015

If we could do a survey,then we can answer our questions.

Like:

Member: cuculigata

Surgery: yes

Chemo: yes,still

Radiation: no

Recurrense: not, yet

Diet: organic, no dairy, no eggs, meat only fresh chicken, fresh fish allowed, some supplements

Dx: endometrial adenocarcinoma, stage4, grade 2or3, April 2015

 

If someone can make it in a table and we just to fill in it'll be easier.

What do you think?

molimoli
Posts: 514
Joined: Aug 2014

Excellent idea , I spent all of last night trying to figure out the best way to get a comparison . I really do need to know how each member of both groups are doing.I am not technically savvy so will ask in a new thread. Right heading for that thread I dont have yet so still thinking . Anyone?

On the other hand what will such a survey do to the psyche of someone going through treatment currently,had treatment already or even the refusers if it turns out that we have missed the 'saving grace boat' one way or the other the mental fall out may not be worth doing such a thing.I left the new thread idea alone last night because I don't know how this can be done without causing added distress.  Just wondering.opinions are required and welcomed.

Blessings, Moli

Cucu me
Posts: 214
Joined: Apr 2015

and no one is tellling us the truth, all sides of that business are in debt of us,the cancer patients.

We live in distress anyway.

If we can get a better picture we'll know beter what to do.

I'll give you simple example with the diet.

Doctors say eat everything you want, naturalists say don't eat this and this and this...

I'm confused and starving and scared.

This is the place where we get information, understanding and support.

So, what's wrong with my idea? It's not going to be exact, I don't expect such a thing...

molimoli
Posts: 514
Joined: Aug 2014

We will all together find a way to address this with frank and honest discussions . ATTENTION:  Ladies the idea is out, say something.

Cuculigata,  indeed this is a very confusing,frustrating and seemingly life long disease but it's navigating  treatment options  and nutritional routes that is most distressing  and.threatening to make us crazy., I  understand ,I am living it. We mustn't underestimate the economic side of cancer treatment or mis-treatment (take your pick) and the monopoly that goes on in board rooms.So then, for us Peace of mind is scarce and fleeting.I hope we will all find a way to make it stay.  Plenty hugs and nuff nuff love.

May the Creator comfort us while we wait . Moli.

Yes go ahead SAY SOMETHING please.

 

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1479
Joined: Jun 2015

Just like everything else we are dealing with... There is no right or wrong answer. Because we all process information in our own way.

I'm responding this morning while I feel generally lousy from my chemo treatment on Thursday. I don't hurt. I just don't feel good. Fatigue is an interesting animal!

While I'm sure there are those in the medical field out there for the money, I believe that  most are in it to help us. I think it is hard on us because there are no exact answers. Meaning that we all react differently to the drugs. Which makes it hard for our doctors to give us absolutes. Very frustrating. I also know there are some horrible people out there posting things that scare us and make us doubt our treatments. And, sometimes it is hard to stay focused and on point. I have gone back and forth on my decision to have chemo, but continue on; based on the trust I have in my doctors. And, I don't want to ever look back with regrets on should have, would have....

So, while I am not totally comfortable with putting the data together, I am willing to participate. Like Moli, I am a bit concerned that it may cause angst for some of us going through this.

Something else... If someone isn't comfortable with the direction of their medical team, would a second opinion be something that could help ease the doubt?

Finally, from a nutritional perspective - We all have our level of what we consider healthy eating (or not). I'm taking the approach that I was in excellent health when this cancer was discovered so I must be doing OK for my body. I am chosing to not alter my diet except to increase the good stuff like fruit and veggies.  If someone wasn't in good health, then perhaps a diet change would be beneficial.  BTW, I eat more sugar than I should. But now, I don't want it so much and the better food satisfies my hunger better. The thought of eating a cookie makes me gag. Very strange.

My Two Cents,

Cindi

Abbycat2's picture
Abbycat2
Posts: 640
Joined: Feb 2014

in an effort to understand, I've read more about why cancer is the "Emperor of All Diseases". I understand why-unabated - it is lethal . We can't cure the common cold! Cancer is so much more complicated than that. I read somewhere that it is more than 1 disease. The question I have asked myself is how is it even possible to kill cancer without killing the person who has it. After all, cancer is not a foreign entity growing inside a person- genetically, it IS the person.

I have been wondering about yamster as she has not posted since July. She chose not to have surgery or any other treatment. I know she wanted the Lord to cure her stage IV cancer. It saddens me to think about what may have happened to her.

Warm Wishes,

Cathy

ConnieSW's picture
ConnieSW
Posts: 1407
Joined: Jun 2012

As I've followed this discussion, I, too, have been thinking about Yamster.  I can only assume she is no longer with us or too ill to communicate.  

I think treatment descisions are highly individual.  As an RN, I did see cases where I thought treatment resulted in a worse outcome than no treatment but these were people with serious co-morbidities or were very old and frail.  I was 65 when diagnosed and otherwise healthy.  As I was being hooked up to my first chemo I thought long and hard about the poison I was introducing into my body.  I concluded that it had served me well for a lot of years and now needed help to overcome an intruder.  Would I repeat chemo or have radiation if I recur?  I don't know.  I would have to take everything into consideration as of that point in time.  Right now I am 3 years post frontline and grateful for every day.

some of the things used in medicine in the past seem barbaric now.  Someday, when we have better tools, chemo and radiation will seem that way.  For now, we just make the best decisions we can.

connie, S/P UPSC stage 1a

Cucu me
Posts: 214
Joined: Apr 2015

I like what you say. One day chemo, radiation, etc. will seem barbaric.

For now we don't have many choices and we try desperately everything that might help. I just feel we are left alone on our destinies.

Despite of our families, doctors, friends and all the help we get because no one knows cure.

The diet and the sport help just because the environment nowdays is enormously polluted and our immune systems are weak.

The rest is just good luck or bad luck.

I wish good luck to all of us.

And I better stop think too much and enjoy every single day as you ladies taught me. Easy to say...

Forgive me if I sound too pessimistic, I can not forget, that the ancient egiptians called the cancer with word, that means "uncurable".

 

 

molimoli
Posts: 514
Joined: Aug 2014

but we will be grateful for long remissions and hope for changes in current status. That's what I/We aught to be working towards , I personally won't muddy my thought process by thinking cure for this disease, It can't be promised by any sane doctor or oncologist. My thinking of a cure,  with the medecine  we have currently is to be in denial that I have UPSC. The current treatment will keep it in check for a while for some people and some not at all  The thought provoking Question here is, despite chemo's and radiation's   risks  and  side effects, is it worth the time bought ? Would I have had the same time if I tried less toxic route and be able to enjoy life's  scenery. For me I know the answer, however,circumstances alters decisions , I have always  been cognisant of that fact so I live my life with an open miind on most things, but never anything as baffling as this ole (lots of very bad words ) -crap.

Cuculigata you did nothing to warrant apology or forgiveness. You cried out loud voicing  your feelings of fear and frustration over this situation you  perceive to be out of your control.You have opened a very needed discussion although  out of frustration (and hunger, lol, yu too funny) comes this tough subject that we must address openly less it chews away at us,alone.

I have done the very same thing,crying out loud,  except like my tumors I was aggressive ,  aggressively  ( in my mind) hating Doctors ,scientist,Medical investers ,pharmaceutical companies ,FDA ,food manufacturers,Governments,you name it, I was an equal opportunity hater.I was not in control of my body and didn't like the sitting duck feeling so I was wrestling it away from cancer and all the people associated with it. I am now fully acquainted with my cancer and have gained control,not of the cancer's behavior but my reaction to it.

Just know we are thankful for your input ,anything, anytime,   we are hugging , wishing you less worry, nuff courage and renewed strength. Eat something forbidden and live.

Moli

 

Cucu me
Posts: 214
Joined: Apr 2015

for the beautiful words and last night I ate something forbidden, a burger(organic though) lol.

My best recipe for dealing with problems is Distraction! I just need to try harder. Thanks again!

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2522
Joined: Mar 2013

Ladies, it was a few weeks ago I saw someone say to pray for yamster, that she was not doing well, and unless someone had been in touch with her husband she may have slipped away.  So incredibly sad.

I remember when I had radiation, I said to the technician, "I bet you have seen it change a lot in your 20 years?"  She said, "YES!"  I look at the anti-nauseau drugs given today.  Things are constantly changing.

I believe the research has given us new tools, and those GIFTS I am going to use every day I need them!  And I am thankful for all the people who have participated in trials to bring us the treatment we have now as well.

Clearly, how people react to the treatments vary as much as the individual, so there is no one answer to any question. 

I am sorry if this came off wrong.  It is a day where my best friend's step mother passed away, my friend suffering from cervical cancer is dying, and a woman at work told me her husband's esophageal cancer has spread to his liver.  I'm sad. I'm pissed.  I am going to fight like hell against this beast with all the tools I can.  I'm tired of losing wonderful people.

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1479
Joined: Jun 2015

First, I'm so sorry for your losses! So darn hard to lose great people in our lives.

Second, thanks VERY MUCH for your response. It helped to put me back on center. 

And, thanks for recognizing all of those that participated in trials and continue to do so to the benefit of all of us that come after.

I know I have a long 4 months ahead of me.  Not looking forward to it, but grateful that we do have the tools to give me a chance for living.

Please continue to express your thoughts and wisdom.  It makes a difference!

Love,

Cindi

molimoli
Posts: 514
Joined: Aug 2014

She pretty well said goodbye  to us in her last post to me ,She knew what was happening and was ready to go. Wish I knew how to transfer that  post  so you could all find peace in her passing words.Does any one know how ?

Rest In Peace my Sister Friend.  Moli.

 

I am wondering out loud if we could designate some family or friend to notify the board when something happen to us, That would mean putting pass word in an envelope and tell the confidant where to find it in case it's needed.

alternately we could buddy with a sister on the board to notify the others when necessary. Just a not well thoughtout thought. Opinions, suggestions?

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1479
Joined: Jun 2015

Hey,  Try putting your mouse at the end or the beginning of the message, then right click keeping the button down, then scroll over the entire message. It should hilite it. You can then left click and will get a pop up. Click on copy. Then you can open a new message and right click again. Click on paste. You should have it in your new message.

Cindi

cleo
Posts: 145
Joined: Sep 2009

Annabella Rose asked a question that is very relevant to her.    If we do not discuss and debate....however 'horrible' we as individuals may find some postings, experiences and opinions..how are we going to learn?  We are so individual that people react in different ways.

Lily_Anne
Posts: 39
Joined: Aug 2015

I read that chemotherapy doesn't delay the outcome any longer than avoiding chemo and looking to maintain quality of life. Because chemo and radiation is never described as a cure it worries me that I may lay myself at the mercy of a poison that will make me sick and ill. When chemo is used as a treatment it is often to delay the growth of the cancer by slowing the rate of blood and oxygen to feed it and stopping new cells developing, the risk is the healthy cells that are being killed will return as mutations which results in a new tumour.

I don't think enough is known about the damge to the body by chemo versus the ability to self heal.  By removing the initial tumour, there is still potential for cells to be in the blood stream that will either die off or manifest itself elsewhere, there is no evidence to support adjuvant chemo as changing this in any way, which was one of the things that led me into refusing to continue treatment. As most women (90%) with a gynaelogical cancer will have a limited life it worries me that my card is marked despite three years of no disease. The rising CA125 level I have makes me want to know what is going on in my body but it still does not make me want treatment, just observation.  I could be incredibly wrong, or it could mean the outcome is no different regardless of my path.

I think to cross the barrier of fear and concern, this thread opens up a debate none of us really like to think about but as time passes surely for the future we should explore.

LA

ConnieSW's picture
ConnieSW
Posts: 1407
Joined: Jun 2012

Compare the survival rates of child hood leukemia now compared to 60 years ago If you believe chemo can't make a difference.  Of course there can be other issues but these kids are living.

molimoli
Posts: 514
Joined: Aug 2014

We all must acknowledge that Chemo does well with certain cancers, eg: breast and blood based cancer suffers are fairing off quite well for long  remissions. However,for our kind of cancer I am not convinced that I should be  relying on Chemo .I don't know what it is suppose to do for me . No one seem to have an expected outcome, it's mostly, it may buy you some time  lets try it  we'll see, coming from oncologists  and doctors .I must say though, I have talked to many elow the belt  cancer sufferers at the cancer centre and 40 % of them love what Chemo does for them despite the side effects the other 60 %  will never do it  again and complained of all kinds of new illness caused by treatment, . I listen to them all and my pondering continues.

Blessings, Moli

 

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1479
Joined: Jun 2015

Moli, I have a thought here and I hope I use the right words to express it without coming off in a bad way... So, If I rub anyone the wrong way, I'm apologizing up front!

For those going through chemo, there are some really awful days. And, the thought of doing chemo again would be daunting. Especially since many are still working on making it through the initial rounds. So, depending on the day, someone may or may not give the same answer. No one knows what they will do (again) until they are faced again with a life or death situation. Those 60% are STILL doing it. So, while they are having to deal with the side effects, which hopefully will resolve post treatment, they are coming back for more with the hope of extended life.

I'm saying this with just my own feelings so far after 2 treatments. On my worst day, I wasn't sure I was going to be able to do this. But, that day is over and I know I will put my butt in the car and go for my next treatment tomorrow. Because I want to live. And, I want that chance of NED long term.

My two cents once again,

Cindi

ConnieSW's picture
ConnieSW
Posts: 1407
Joined: Jun 2012

And that's not always easy to do in writing.  I agree, and in the end what we choose to do is an individualized decision, just as we are individuals.  It would be so much easier if it were cut and dried but it isn't.

molimoli
Posts: 514
Joined: Aug 2014

Well expressed Cindi,No apologies necessary, Honest responses enriches this board's benefits  to us all. My best wishes for best outcome. We will be on this journey with you,supporting with no conditions.

Nuff love , Moli

SettledSue's picture
SettledSue
Posts: 55
Joined: May 2012

Moli, I was struck by your saying that 40% of the people you talked to were happy with chemo and 60% weren't. But those 60% were still alive, possibly because of the chemo. I think you will find many people on this board whose tumors were reduced in size or at least kept from growing because of chemo and their lives were extended. Any side effects from chemo, like my minor neuropathy in my toes must be weighed against the benefit of being alive. 

Sue 

Hopeful162's picture
Hopeful162
Posts: 82
Joined: Sep 2014

Almost a year ago now I was diagnosed with UPSC, which after comprehensive surgery in October was staged at 1A. This stage was certainly good news to hear, but my oncologist, after consultation with the tumor board at the hospital, still recommended that I have taxol/carbo chemo. He explained it this way...he said with chemo to knock out any UPSC cells that might still be hiding that this would be my best chance for a cure. He said that with a recurrence they would keep me alive as best as they could, but I would have lost my chance for a cure. This made sense to me, and the chemo regimen was certainly doable with only about three days out of each three week cycle where I felt rotten. Now I am NED and certainly hope to remain that way through this surveillance stage and beyond!

In short, I have trust that my doctor has my best interests at heart and that included chemotherapy.

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1479
Joined: Jun 2015

Thanks for the reply. That DOES make sense. And is just another confirmation for me to continue on the chemo path. I hope your reply helps others here too.

Also, my doctor is trying weekly lower doses for me and I have wondered after this second one if that is the right way to go.  You noted that you had 3 rough days over the 3 weeks.  I had about 36 or so hours of rough stuff this time.  And, he said it could be cumulative so not sure how much worse it may get.  I think I will continue on this path for now and see if my body continues to be strong enough. It all depends on how well my blood counts recover. They were down after the first treatment but not enough to stop the second one.  I will say that going weekly is a constant chemo hit to my emotions. So, have to work hard to keep my spirits up. Just don't get much of a break between treatment sessions.  Anyway, I went off subject here but wanted you to know your input helped me.

Love,

Cindi

AWK
Posts: 364
Joined: Mar 2013

I think there is a ton of information out there both pros and cons.  As I said in my earlier post, it is really an individual's choice.  In my case, having seen what my father went through 20 years ago with glioblastoma and how treating that has evolved, to mother's fight against breast cancer and how well she did - we learned a lot about how things evolved in the medical world and cancer treatments.  I am now participating in a clinical trial that will benefit many types of cancers when they advance and are inoperable.  For me, the key is twofold - the treatments keep evolving and becoming more and more targeted and secondly - I am not seeking a cure, rather a way to manage this as a chronic disease while living fully and thriving.  A cure would be great too but not likely for me at this time.

i have had a lot of amazing experiences because of my cancer and I am grateful for that.  I trust the medical community as a whole and while there are certainly areas that aren't perfect - things are evolving and I hope that I can be a part of those changes in a very small way.  

Hugs to all.  Anne

Cucu me
Posts: 214
Joined: Apr 2015

You are inspiration!

Thank you

AWK
Posts: 364
Joined: Mar 2013

You have such good information and we all do.  I think it might get buried in this important thread too.  Anne

molimoli
Posts: 514
Joined: Aug 2014

Lily-Anne  I thank you for such a thought provoking response. Blessings and peace of mind in whatever route you take , seem to be working.Continued NED, I wish for you.

Moli.

 

molimoli
Posts: 514
Joined: Aug 2014

Hi Ladies,You have all made my afternoon smile filled , Smiling to see us all feeling so  unbared from expressing ourselves, with no judgements ,one way or the other,

I knew it was a powerful question posed by Annabella Rose.Thank you my sister.You have opened' Sesame'

To all of you I knew we'd hear your voices full of strength,weakness, informations,mis-informations, worries,fears ,satisfaction ,resolutions.positives ,negatives  All of this boils down to WONDERMENT as to how we got here and how we can get out of this without actually dying, and if we must die of this how can we outfox anger , bitterness,and unchangeable regrets, which by itself sucks life and  happiness out of us faster than cancer can suck our good cells out till only it's own is left.

I choose to think that our glass is half full, we were put on notice. It is up to us how we use our lives ,moving forward.

Regrets are yesterday's business, not welcomed today. Be in the moment , LIVE,  we may drop dead anytime and it may  have nothing to do with our cancer ,something else can snatch us away from cancer or cause us to be no longer alive but not quite dead.I don't waste time worrying about cure,There is none in this present time so it is just wishful thinking.I won't use up my minutes on that.    I hope for remission or stunted c. cells that is too weak to move.  my wish to me /you.

I am embracing that of my life that is still present,  I am going to die feeling fulfilled, my to do list is getting done It's a wonderful blessing that I've been put on notice.because I was so healthy that I took the days for granted as they passed by.now I am forced to play catchup.

You can do treatment or refuse treatment,or just sit on the fence and ponder treatment (like me) but while you do that don't forget to remember to make time to LIVE. It wards off end of days bitterness.Turn the pressure down , 'PRESSURE  BURST PIPES  Thats my final take on this subject.  Glad that it's being discussed. 

Embracing you all. Thanks for being there. Nuff nuff love, Moli.

 

molimoli
Posts: 514
Joined: Aug 2014

Annabella Rose  you are in my thoughts ,Thanks for your latest posts.The posters are exhaling and thats a good thing.

Know that when I get overwhelmed, for what it's worth I run to the creator and when I do I go as part of a whole,I ask for good manageable outcome for all of us. I make my supplication and leave us all to the mercy of grace, and I don't worry much. Worry changes nothing to good my darling,so let it go ,whatever it is.

My head tells me that you are very worried and sad , Cheer up if this is the case I hope for added strength and peace of mind for you today. Feel the hug Annabella Rose.

My head may be off ,feeling that way ,if it is, accept my apology and blame it on my (fear of ) chemo brain.

Any way I was just announcing the big big hug I sent you, Nuff love.Moli

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