CancerCompass message board discussion started by ErinGate on 8/3/2008 http://www.cancercompass.com/message-board/message/all,26748,0.htm Fri, 21 Nov 2008 00:00:00 GMT Fri, 21 Nov 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ My mom who is 55 years old was diagnosed with cancer of an unknown origin on April 11, 2008.  About a month ago, they finally diagnosed her with Stage IV RCC with mets to both lungs. She started on the Sutent a week ago and it did not take long for the side effects to kick in.  I did a lot of online research about Sutent before my mom started to take it, so I was prepared (or so I thought) for what was about to take place.The first 2 days on Sutent were okay.  She had no side effects at all. The third day, however, it went down hill.  She is suffering from diarrhea, vomiting, severe pain in her side and back, soreness in her stomach and fatigue. This is day 7 of the treatment and she has not bounced back since. I've read the majority of the posts with regard to side effects hoping to get a feel of what we might be in store for, but everyone's situation seems to be different.My mom is also severely depressed and wonders if it is even worth taking the Sutent if she was already unhappy with her life before this all happened.  This in turn has depressed me.  Here is a once vital, energetic and active woman who can now not even muster up the energy to leave her home.  I cry nearly every day at the thought of losing her.  When I'm not sad about that, I'm sad about the fact that she is not the same person she once was.Does anyone know where I can seek support about this?  I'm in Cleveland, Ohio.Thanks to any and all who respond,Unsure of what to do in Cleveland ErinGate Sun, 03 Aug 2008 00:00:00 GMT Dear ErinI'm not surprised your mother is depressed. You don't need me to tell you that the cancer DX is a massive blow - I liken it to hitting a wall at 90 mph! It can completely derail you psychologically, let alone anything physical going on. Depression is extremely common, and in many cases it is part of the process, so to speak, of coming to terms with being so ill. This may be exacerbated if one was vigorous and active before the DX, and you now feel you are an 'invalid'.When we live in fear of death, and in daily physical discomfort and pain, it is natural to be low - how could one otherwise? I can understand your mother even thinking of chucking in the Sutent, but I would strongly urge her to hang on in there! As you will read here, the side effects CAN ease up over time, and with the next cycle, and so it is so worth persevering unless and until it proves ineffective medically.Would it help give her the necessary resolve to keep at it if I told you that here in the UK Sutent is, quite literally, gold dust?! It is not yet approved by the NHS (National Health System, into which all taxpayers pay to get health cover), which means you either have to buy it privately or, if you are very lucky, and have private medical insurance, that may pay for it. But there are people here in the UK who are, quite literally, bankrupting themselves (cashing in their pensions, emptying their savings, selling their houses and even going out fund-raising to the public!) in order to buy the Sutent they need to keep going. It is a tragedy and a disgrace at the same time (especially since in European countries the state health system provides free Sutent, and other advanced cancer drugs.)So, please, please, let your mum know how VERY fortunate she is simply to HAVE Sutent at all, despite the daily hardship. Believe me, over here in the UK, there are far too many people who are denied it.All the very best to you and your mother. I know those here with extended experience of Sutent and its side effects will be here to help her resolve.Julie   JulieUK Sun, 03 Aug 2008 00:00:00 GMT ErinGate - my prayers will be there for your mother & for you.  Life is a journey, & even w/ mapquest we can not always predict where it is going to take us.  Hopefully, your mom has a good oncologist who is sensitive to her response to Sutent & will react as needed.  Are you at Cleveland Clinic?  It has an excellent reputation as one of the top facilities in the country.  If your mom's side effects do not moderate, explore a dosage reduction w/ the oncologist, that has helped my wife, albeit we have not had a CT since the reduction to tell if the Sutent has remained effective at the lower (37.5 mg/day) dosage.  We will find that out next Monday & I hope to update this site w/ the, hopefully, good new.  Stay strong for your mother & seek ways to encourage her to trust in the Lord, Who knows what we do not, sees what we can not & has promised to be w/ us in all our trials. God be w/ you, and w/ your mother. stgooch Mon, 04 Aug 2008 00:00:00 GMT Hi!,  I am so sorry your Mom is having a bad time with Sutent . I am on my 6th cycle, it does take alot of your energy. The rest of the side effects can be helped with meds.Please contact her Onc to get these prescriptions. I hope she is able to continue this treatment at least long enough to tell if it is helping, but if she can't tolerate the sides let her Onc know what's happening. You can get a lot of feed back on this site. whether it's info or encouragement or just an ear to listen. We pray your Mom starts to respond favorably and gets some relief .  Take Care                                                                                             John jorolo1 Mon, 04 Aug 2008 00:00:00 GMT Hi Julie,I'd like to take the opportunity to thank you for your kind words and encouragement.  I have seen your screen name in many of the posts and imagine you are a source of comfort for many.This is all very new to our family and I get some comfort from reading other people's experiences.  I'm sorry to read that Sutent is not readily available in the UK and you are absolutely right in that I am blessed that this option was available to us.Thank you again for your encouragement. ErinGatep.s. your shoulder must be sore from all the people who have had to lean on it!  :-) ErinGate Mon, 04 Aug 2008 00:00:00 GMT stgooch,I would also like to thank you for your awesome words of encouragement!We are actually with Kaiser (and not Cleveland Clinic) and despite their reputation, her oncologist has remained extremely professional and supportive during this time.Before this occured I was not really a woman of much faith.  Am I now?  That remains to be seen.  When I found out my mom had cancer, my first reaction was the easy one (why is God punishing us?? we're good people!!).  For weeks I wondered if this was punishment for my lack of faith in Him.  I am still struggling with this.I hope to see you more on the message boards and look forward to exchanging GOOD news. My thoughts are with you and your wife (who is blessed to have a loving and supportive husband).  Let me know how the CT scan works out.Your new friend,ErinGate ErinGate Mon, 04 Aug 2008 00:00:00 GMT John,I am encouraged to know that you still have the "fight" in you after 6 cycles. That's amazing! I feel a little silly complaining about my mom's sides after just a few days of the first cycle.  It's just tough to watch her seemingly become a different woman overnight.  Did your loved ones have the same concerns about you? Did they voice them to you?  What was your reaction?Thanks again for making me feel better and please keep in touch.ErinGate ErinGate Mon, 04 Aug 2008 00:00:00 GMT Hi Erin,I just want you to know that I can really relate to what you are going through.  My Mom died of pancreatic cancer a little over a year ago.  It happened so fast....from the time of diagnosis until she died was only 3 weeks!  And now, just as I am beginning to finally heal a little from the sudden loss of my Mom, one month ago I found out that my husband has stage IV renal cell carcinoma with mets to both adrenal glands, both kidneys, both lungs, and many of the lymph nodes in his chest.  My first reaction was just to cry out to God, "What have I done to deserve this?"  Honestly, I have wondered why I am being punished.  If only I had more faith.  If only I was a better person.  If only I went to church or read the Bible more.  If only.....You know what?  I really don't think it's anything I have done.  I don't think God is testing my faith by making my loved ones sick.  I do believe that God can use even the most horrible situations for greater good.  For now it seems like the whole world is crashing around me, but in the long run this will somehow be used to His glory.  We will get through this.  It is okay to question these things and to ask why.  It's even okay to have doubts or to feel your faith slipping during troublesome times.One of my favorite verses in the Bible is the shortest verse, John 11:35.  It simply says, "Jesus wept."  He wept because his friend Lazarus had died, and the family of Lazarus were all grieving deeply, crying and devastated.  You see....Jesus did not weep because He was sad about Lazarus.  He knew where Lazarus was.  No.  He wept because He felt the grief and sorrow that his friends were experiencing.  He wept because He knew their sadness and heartache.  He understood.I think that somehow, through this, you will see that God really does care what we're going through.  He will give us the strength to get through it.  The end result may not be what we want, but He will help us and comfort us during the awful times.  Just ask Him.  This wasn't meant to be a sermon.  Really, it wasn't.  I was just explaining how I have felt the exact same way as you, and the thing that comforts me is to know that Jesus cares.  When you weep, He weeps.  He knows.  And that does make me feel so much better.Hang in there, Erin.  Nancy Twiddles Tue, 05 Aug 2008 00:00:00 GMT  On 8/4/2008 ErinGate wrote:Hi Julie,I'd like to take the opportunity to thank you for your kind words and encouragement.  I have seen your screen name in many of the posts and imagine you are a source of comfort for many.This is all very new to our family and I get some comfort from reading other people's experiences.  I'm sorry to read that Sutent is not readily available in the UK and you are absolutely right in that I am blessed that this option was available to us.Thank you again for your encouragement. ErinGatep.s. your shoulder must be sore from all the people who have had to lean on it!  :-)Dear ErinThank you very much for your kind words, but I'm a complete fraud to accept them! I actually find it extremely therapeutic and comforting to be on these boards, as it puts me in touch with so many others going through the same ordeal - sometimes even worse ones! - than my husband and I are going through (sorry, every time I type 'My husband and I' I feel I sound like the Queen, as that is her 'cliche' for when she gives her annual talk to the nation on Christmas day!). I also do love message boards in general, but these days I find I really haven't much interest in discussing which washing machine to buy, or where's a nice place to go on holiday or what's a good book to read, etc etc. I find that reading women's magazines urging us to lose weight, find new ways to cook vegetables, latest handbags well, just irrelevant to my life right now..... I don't mean to belittle them, just that they represent, in a way, a life that is now just gone. They seem completely alien to me (especially those 'self-help' articles about 'be more assertive' or 'don't stress out' etc etc!!!!!) So, in a way, these cancer MBs are a flagrant subsitute for my deprivation of the ones about best buy washing machines!!!!!Also, I do hope I didn't sound over the top when I said about Sutent in the UK - I really didn't want to sound like a 'look, just be grateful, OK?' in a nasty manner. Because I also know, horribly, just how grim lack of health insurance can be in the USA for those who fall through the net. The NHS has its limitations (paying for the latest cancer drugs is one!) but it still is a 'national treasure' that I, and most other Brits, value enormously, so I don't want to sound too carping.This may sound an odd thing to say, but in a way, if you are in very good health when you get the DX, it can, perhaps, be harder than if you had already got poorly, as with the latter you are already aware that 'something is up'. But for the former, perhaps for your mother, if she was very lively and active, suddenly having the 'cancer' label hung round her neck can maybe be even more of a blow? If she's used to feeling well and healthy, having side effects, even if the drug is doing her good 'underneath' can be very onerous? Also, don't forget that a mother-daughter relationships is like no other in the universe! So you may perhaps be getting the 'offload' from her far more than any of her other relatives????? It may also be psychologically hard for her to accept any kind of 'role reversal' with YOU now as one of her caregivers, and she being the recipient, which she may find frustrating, confusing and disturbing. Also, too, it may be that she is finding it a relief to 'vent' at you when she is in pain and discomfort from the side effects?All the best, and I hope her side effects start to ease up (and even more, that the Sutent is doing its stuff  to the cancer cells!!)Julie JulieUK Tue, 05 Aug 2008 00:00:00 GMT Nancy,Too bad that wasn't a sermon or I would have been in the front row of your congregation!I have had friends, family and even some co-workers with the same words of encouragement, but I am still struggling with the "why" of it all and trying to wrap my head around the idea that it is His plan.I am so sorry to read about your mom's sudden passing and your husband's illness.  I'm glad to know that you're handling it the best way you know how. I don't know how long it will take for my faith to be restored when I'm not sure it was really there to begin with, but reading more messages like yours will surely push me in the right direction. Again, thank you so much. Erin ErinGate Tue, 05 Aug 2008 00:00:00 GMT Julie,This message really resonated with me!  I know exactly what you mean when you say that things really don't seem the same.  On my lunch break the other day, I sat and "people-watched". It seems like people were walking past me without a care in the world and that my family was the only one that seemed to be dealing with this. I hardly read the entertainment blogs anymore, opting to come to THIS site as soon as I log on.Also, my mom and I had a long talk about her wanting me to live my life to the fullest instead of constantly worrying about her.  I know she's getting tired of me starting every conversation with "how ya feeling?" and speaking as though she's a feeble, bedridden person.  But I can't help it. She's like a ferrari that suddenly has engine trouble or a champion thoroughbread (sp?) that broke its leg!As I've mentioned before, this is all very new to us and I am fascinated by other people's stories and experiences.  Your assessment of my relationship with my mom was spot-on. She's my very best friend and I don't know if I can handle losing her to this.  I'm sure you're going through the same thing with your husband.  If I may ask, how long has your husband been on Sutent? What are his results?Erin ErinGate Tue, 05 Aug 2008 00:00:00 GMT Erin, I would recommend you ask her dr. about Torisel. My husband has been taking it for about 4 months. It is given by IV once a week. The side affects of Torisel have been nothing compared to Sutent. He is starting to have problems tasting his food, some fatigue and sore feet.I wish your mother the best.Kim Kim p Fri, 08 Aug 2008 00:00:00 GMT Hi ErinGate ~ I am new to this site as I am just recovering from a partial nephrectomy for Stage 3 renal cell carcinoma -- my surgery was on August 4, so I am just two weeks into recovery (I am a 46 year-old woman, mom to 2 kids).  I am responding to your message as your initial question - "Why is God punishing us?" caught my eye (and it was posted on Aug 4, the day I had my surgery).   I think we all ask that question but we must remember that we live in a fallen world.  That means that sickness and death were not part of God's original plan for humanity, but when Adam and Eve sinned, then sickness and death enterered into the equation.  God provided the only sacrifice acceptable for our sins in the person of His only begotten son, Jesus Christ -- and it is through a personal relationship with Him that eternal death is avoided.  However, sickness and disease will still exist, but these are things that can draw our attention back to God, and that He will use to draw us to Him - as it did with you when you asked, "why is God punishing us?"  My prayers are with your family and your mom-- God says that if we seek Him we will find Him -- it's about a simple relationship with Him through His son Jesus Christ -- not about going to church or following a bunch of rules and regs.  Relationships begin with communication -- communication with God is through prayer.  Trust me, it will make all the difference! Maridella <>< Maridella Mon, 18 Aug 2008 00:00:00 GMT