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illead's picture
illead
Posts: 604
Joined: Aug 2012

We went to Bill's oncologist routine visit to check his ct report and to hear that he was still in remission (2 yrs) and get ready for his last rituxan infusion tomorrow.  Well.......it didn't turn out exactly that way.  They found a 3x8 cm cluster of lymph nodes in his abdomen that were not there before.  He is scheduled for a pet scan on Friday and we will see the doc on Tues next week.  He is pretty certain that the Mantle Cell is back but said it's a slight possibility it could be something else.  He just got over that bug that has been going around and he had it for 4 weeks.  That's a flicker of hope but we're not holding our breath on that one.  It will be a long week.

Becky

Shoopy
Posts: 210
Joined: Jul 2013

Bill and Becky

I pray that it has not returned and is just some sort of anomaly.  I will keep you in my prayers!

Karl

allmost60's picture
allmost60
Posts: 3184
Joined: Jul 2010

Hi Bill and Becky,

  Well darn...that's not something you wanted to hear, but hopefully the bug Bill had is the culprit causing the cluster of nodes. It doesn't hurt to think positive until more is known. I'm so sorry you have to deal with new testing and waiting for results...it's the very thing we all pray won't happen after we are done with treatments and in remission. My heartfelt prayers and positive thoughts will be with you while you wait to find out more with whats going on. God bless you both.

Love...Sue   (FNHL-stg3-grd2-typA-Dx-6/10-age 63)

 

COBRA666's picture
COBRA666
Posts: 2418
Joined: May 2010

Oh Crap, I didn't want to hear that. It may be due to him being sick before. You know the lymph nodes swell when we get sick. What does concern me is we are talking about cm's and not mm's. Of course I am not a Dr. and don't really know. I sure hope it hasn't returned. Be thinking of you and Bill until you find out what it is. John

illead's picture
illead
Posts: 604
Joined: Aug 2012

Thank you so much for your support and caring.  Boy I never realized how much it really meant as when I first found this forum Bill was already in remission.  I think I'm still in shock.  Think you know Karl, you had a real scare yourself and now facing the SCT.  Your words are always so gracious Sue and I know they are heart felt.  Who knew John, this was supposed to be  "going through the drill"  What makes MCL so scary is that the relapse is hard to deal with.  They have some options but none are tried and true.  His onc says he will confer with UC Davis (they are affiliated with them) and also Stanford and others, so Bill is in good hands.  He is the forever optimist, we only need one basket case in this household Wink.  Besides the cluster which in whole is in cms., there is one outside of it that is only 7mm.  The cluster seems pretty large for a flu bug though, but what do I know?  We both appreciate your wonderful words of support.

Bill & Becky 

COBRA666's picture
COBRA666
Posts: 2418
Joined: May 2010

Becky,

  Thats the way it was when they found my Follicular. I can't remember the size, but it was in a cluster in my abdomen. I had R-cvp and I am not kidding you, I could feel the lump on my left quadrant(close to the middle) feeling softer and mushier that night. It was still there, but instead of a hard ball it felt like more like a soft rubber ball. By my 2nd or 3rd round I could not feel anything. After my 3 month PET scan it was down more than 50%. I know very little about Mantle Cell except from the little I read here. The good thing is they are coming so far with treatments. We have to wait to see for sure what you and Bill are facing first. Don't want to put the cart before the horse. John 

COBRA666's picture
COBRA666
Posts: 2418
Joined: May 2010

  Just to let you know I have been burning up the computer looking up Mantle Cell Lymphoma. I usually do not go to the web nor recommend it because I do not know the date of the articles I am reading. These articles can scare the heck out of you sometimes, but there is no other choice.  John

jimwins's picture
jimwins
Posts: 2109
Joined: Aug 2011

Like others said, I hope it is some sort of anomaly and the PET scan will be clear.  I am keeping you guys in my thoughts. 

Hang in there and please keep us updated.

Hugs - Jim

Rocquie's picture
Rocquie
Posts: 576
Joined: Mar 2013

Well, Becky and Bill, it sure will be a long week! I know that is not news you expected or wanted to hear. Bless you both. None of us here wanted to hear that either. I know your faith is strong and that will comfort you.  I will also pray for you both. 

(((Hugs)))

Rocquie

 

GKH
Posts: 368
Joined: Jul 2012

Needless to say this is disturbing to everyone however I have been impressed more than you know by your optimism and great sense of humor. Keep laughing and things will go your way! All my best. I will be thinking of you.

illead's picture
illead
Posts: 604
Joined: Aug 2012

     I have to say that we are really bowled over by the support that you all have sent.  I have to admit something, I have been a little concerned about the lack of commenting lately, although I really understood, none of us can be "up" all the time.  I think it has just happened all at once.  It got to the point that I was thinking maybe it was me, ( we women are just nuts  aren't we?, always overthinking).  I just thought I may as well not even try anymore.  I know, very stupid.  I apologize to all of you.  You are truly a a great group of people and we will treasure and reread your comforting words often.  Jim, you have been such a grounding influence to everyone, and Roquie, a fragile rock. Thank you for noting our faith, it's always being tested isn't it?  GKH, always there and what sweet observations you have.  It really means so much.  I don't mean to sound over dramatic, but for those who do not know, MCL is one of the newest, and worse lymphomas there is.  Only about 3000 new cases a yr and little information.  The prognosis is that it is incurable, and will always relapse.  Once that happens there is little hope.  That has changed however, there has been a lot of progress since then but it still remains incurable, and not much known for long term, although there are new meds and one just came off trials only for MCL.  Although the hopes are for other lymphomas and leukemia, it was pushed through for MCL only for the moment because of the dire need.  Bill was given a chemo that had just recently been taken off of trials and his recovery was dramatic.  He was called the "miracle man" at the cancer center.  It was obvious today that his onc was even shook up.  So although we were always guarded, we were hoping for more time before a relapse.  So sorry for the droning on, it was just a real blow.  Bill is fine though, still feeling great and it will take a mac truck to get him down, his glass has always overflowed!  Tonight was much better for me, it's amazing what a "strong" Maker's Mark old fashion and the Westminster Dog Show will do Laughing.  One more thing is that until we know for sure we are only sharing this with our son and a special couple that we love very much, and you.  We feel it will be too much for some, so more prudent to wait for the correct info.  Thank you for being there.

Bill and Becky

Joemory21's picture
Joemory21
Posts: 40
Joined: Feb 2013

I hope it turns out to be anything other than a relapse. I will be thinking about you two. 

Jonathan

allmost60's picture
allmost60
Posts: 3184
Joined: Jul 2010

Hi Becky,

 I joined the group in July of 2010 and have posted a little over 3,000 posts, often wondering if folks were getting sick of hearing from me. Tongue Out I have seen so many people come and go, some sticking around and others that disappear for good. We have many "old timers" that haven't posted in ages, but I just remember their battle and the times we shared and then say a prayer and hope all is well with them. This year was hard for me with posting as it was the year(2013) that Steve retired. We had some adjusting to do which made it hard to post as often.Also, many of the old group had dropped away and quite a few times when I posted to new folks there would be no response back. I think we just have to do what works for each one of us and understand that when someone fails to respond or hasn't posted in awhile there is probably a good reason for it. I know I check the site daily and try as best as possible to be supportive. Your dear Bill will go to the head of the line in my daily prayers, and my support will always be here. Take care and keep us posted. Love...Sue

(FNHL-stg3-grd2-typA-Dx6/10-age 63)  

COBRA666's picture
COBRA666
Posts: 2418
Joined: May 2010

Sue ,

 You echo my feelings exactly. I do not have as many post as you, but am running a close second if you count all the times I have been FLAGGED. LOL, John

jimwins's picture
jimwins
Posts: 2109
Joined: Aug 2011

Sue, I would never get sick of your posts and honestly I look forward to them.   They are always honest, filled with love and supportive

You have my permission to stop after you hit a million posts! :).

Hugs 

 

 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 1349
Joined: May 2012

Becky,

I'll be praying for you two.  I work all night all weekend and cannot ever do much posting here from Friday night until Tuesday morning, but I too have noticed that the Site has seemed very "flat" for the last two months or so; I hope it will pick back up.

I actually just got back from the oncologist today (Tuesday) and my six-month labs were all normal. I almost feel guilty .  I am now 4.5 years out, and my doc said after a check in six months, I will go to a once-a-year schedule.  Her also gave me info on a Hodgkin's Survivor Group at the hospital that he suggested I join, and I am definitely going to do that in a few weeks. 

This site has the full spectrum of lymphoma experiences, from the quick and easy, to maintenance for some that last years or even decades, and many other clinical paths that we read and learn about.  What impresses me the most I think are the rough cases that relapse, go to SCT, and then complete remission. I have mentioned my older firend who just passed after 13 years fighting prostate. Most of those years were problem free, and he enjoyed at least 12.5 of those years; he really suffered only about 4-6 months at the end. I regard him as a huge success story.  We have had numerous reports of those who fight the good fight for many years, and it is understandable that people, after cancer fades to the rear of their thinking after years of remission, lose motivation to come to the site very often, but their storys are very much appreciated when they do . 

The most inspiring person (among many) I've encountered here was surely Dixie Chick. She relapsed so many times, and had received every imaginable treatment, but her spirit was always strong and cheerful, and she described the worst ordeals imaginable as if they were just par for the course. Bless her soul.

max

.

coachmike
Posts: 153
Joined: Oct 2011

Becky

 

I am so sorry to hear of this unexpected news. I will pray for Bill that this is only a hiccup from the bug and not something more serious. I also pray for you, as the life of the caregiver is more streesful then the patient at times. My caregiver was my life line and there is no way that I would have been able to get through it all alone. Please take time for you and keep your strength up. You both are in my prayers

Mike

illead's picture
illead
Posts: 604
Joined: Aug 2012

Jonathan, it's nice to have you back and we really appreciate your kind thoughts.  Something I have always wanted to ask you, I hope that tongue is sticking out at cancer Undecided.  Coachmike, thank you so much, I am so happy for you and know that your ordeal has not been an easy one. We also get the report and cd before we see the doctor, but oddly I always want to wait for the doc.  I am so glad we did not read the report before.  I don't think I could bear reading  "recurrent lymphoma should be suspected" and then have to live through the weekend before seeing the doc. Aargh.  Thank you for your kind words and also thank your caregiver, it's a labor of love.

Max, our friend, we are also so happy for you.  I know how you feel.  We have seen 2 dear friends who we saw often at the cancer center pass away and one who is dealing with pancreatic cancer since Bill's ordeal began.  We too have felt guilty in a way, but it's life, and we are happy when anyone gets 2nd or more chances.  Your words about the fighters were a big encouragement for us this morning.  If it is what we suspect, we will just start the battle again.

Our thoughts, Bill & Becky

COBRA666's picture
COBRA666
Posts: 2418
Joined: May 2010

  I don't know about you, but I asked everyone that sat across from me and beside me at my infusions what type of cancer they had. There were 4 people in the large cubicle. I found the majority had breast,colon,prostate and lung. I only found one that had Lymphoma and that was a relapse from 11 years ago. They were not even sure of the sub-type. They were getting treanda(spelling) as a 2nd line of defense. I am sure there were other Lymphoma people there, but I could never find them. I was just looking for someone to relate to that had the same thing as me. It seemed I never saw the same people twice because of the scheduling of the appointments. When I first started asking I would say, "What are you here for?" I would get odd looks, so I learned quickly to ask what "type" are they here for. When I would tell them my type most would ask me what that was because they never heard of it.  John

illead's picture
illead
Posts: 604
Joined: Aug 2012

Our cancer center is private cubicles, so not a lot of chatting going on.  It does seem there are more women than men, interesting.  The next time we are there, I am going to ask the nurses about what types of cancer are more prevalent in our area.  I think that is good info to know.  I know most people wonder what lymphoma is, I didn't know myself and I never understood Hodgkins and non Hodgkins.  I always wondered who Hodgkins was, actually I still do Smile.  On top of that there are so many types of lymphoma.  We have so much trust in Bill's onc but he is young and we wonder if he has ever treated MCL.  We are thinking that Bill may be his first case and he was in remission when Bill first saw him.  Now that Bill has maybe relapsed, he seems in a quandry as to what to do,  Think he is happy that it was caught early so he has time to investigate and confer with others  We have every confidence that he will soon become an expert on yet another type of lymphoma. 

Thanks again for being there John, Becky

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 1349
Joined: May 2012

Dr Thomas Hodgkin was an English MD in the 1800s who discovered the types of cells in the Hodgkin's strain of lymphoma. It is the presence or absence of these particular cell types that determines whether a lymphoma is Hodgkin's or non-Hodgkins.

http://en.wikipedia.org/wiki/Thomas_Hodgkin

 

illead's picture
illead
Posts: 604
Joined: Aug 2012

Now it's just remembering it!Embarassed Becky

GKH
Posts: 368
Joined: Jul 2012

My center is in my doc's office. For all the world it reminds me of a men's barber shop. I would guess it has about 12 "barber chairs" its usually pretty full. I woulg guess about 50/50 men and women. I see a lot of people getting rituxan. Only guy I ever really talked to had lung cancer. My biggest shock was how upbeat and pleasant most of the patients. The staff is great.

coachmike
Posts: 153
Joined: Oct 2011

hopefully it is not a relapse, but if it is...is a stem cell transplant  a possible route to take?

illead's picture
illead
Posts: 604
Joined: Aug 2012

Yes it is.  He almost had one before, but since he came back from deathlike to incredible health we started questioning.  In my research prior I had come across 3 doctors doing extensive research with mantle cell, they really stuck out to me over others, one in WI and 2 in Germany.  Bill emailed with just simple facts ie, I have mcl do you suggest a SCT?  We didn't think they would write back, but all 3 immediately did, and were very gracious and willing.  They all suggested not to.  One of the German docs even wrote back twice.   I think because the cancer cells in MCL are impossible to kill completely, thus one is never "cured"  One of the earmarks for MCL is chromosome damage, so I think that must be another factor in no cure.  I don't really understand that part of it.  We have asked 2 oncs and gotten totally different answers. MCL is so new, evidently a beast of it's own and rare, most doctors have not dealt with it.  Bill was all set to make an appt. with Cedar's Sinai for a SCT but we just didn't feel right about it.  If the news is not good on Tuesday, we will be writing those doctors again and asking about the ibrutinib (I mentioned that in an earlier post) and also about a SCT and anything else.  In our correspondence, Bill asked if there was anything being done in Germany that we were not doing here and the doctor assured us that we were up to date in the states.  Since our cancer center is affiliated with UC Davis, they confer with the best so we are not concerned about the fact that Bill's onc is not that familiar with MCL, he is very willing to listen to us and he thinks our talking to the other doctors is good.  I know you are very happy with your SCT and we are thrilled for you, I always follow everyone's story.  I will probably be asking you more about that in the future.  I am so sorry this is so long and probably TMI but I appreciate your thinking of us.  I'm doing pretty well, I try not think about it but I wake up in the morning with a big knot in my stomach.  We knew it would happen but we were hoping he would stay in remission a good long time. 

Thank you Coachmike, Becky

coachmike
Posts: 153
Joined: Oct 2011

I know for myself that when the SCT was my route of therapy of course i was initially fearful, however looking back now of course im so happy i did it. It honestly saved my life. Of course Bill and I had different cancers, because im still hopeful that Bill HAD cancer and this is not cancer, but if you ever have any questions about the process I am here for you. I took a journal of some sort during the whole process and would be very happy to share my experience with you.

Praying For You Guys

illead's picture
illead
Posts: 604
Joined: Aug 2012

Yes, for sure we have not ruled out an SCT, so I'm sure we will have some questions if it becomes an option.  It's good to know you are there for us to count on.

Thank you so much for your thoughtfulness. Becky

onlytoday's picture
onlytoday
Posts: 601
Joined: Jun 2010

Becky,

Praying for you two that this is NOT a relapse.  Oh, I can only imagine how you are feeling right now and I am so sorry for all of this stress.  Sorry it took me so long to post,just signed on the sight.  I've been signing on to it less and less.  Don't know why, I don't mean to not be supportive!  Somehow right now that just works for me but it doesn't change how much I care about everyone on this sight.

So as you go thru the weekend and wait please know that I am with you - praying hard that this is not a relapse but is maybe related to Bill's recent illness.  Hey, who knows?  As we all have learned over and over again ANYTHING is possible.

Praying hard.

 

Hugs,

Donna

allmost60's picture
allmost60
Posts: 3184
Joined: Jul 2010

Hi Donna,

  Glad to hear from you! I assume everything is going pretty good for you right now, or you would have shared otherwise. I'm doing good also..(knock on wood)! Tongue Out My next yearly scan is scheduled for the first of April, so we will see! Feeling good, so I'm keeping positive thoughts for good news. You take care and keep warm...spring can't come soon enough for most of us here! Love...Sue

(FNHL-stg3-grd2-typA-Dx 6/10-age 63) in Remission.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 1349
Joined: May 2012

Several have mentioned their infusion center arrangements. I went to an oncology practice with about 28 doctors scattered in seven locations . Two of those locations were their main infusion locations (a few did not do infusions at all).  The center I used had about 30 stations, all "open bay," so people could freely visit with one another. There were also four private rooms with toilets, for people who needed them.  I made several friends at the time, and most (but not all) liked to talk.   Several people came only for iron infusions, and many of them were not cancer patients, and never had been.  A few other non-oncology patients came for other forms of infusion that were neither iron or chemo. There was a blanket heater, drinks and snacks which volunteers gave out, and Wi-Fi .  It was about as pleasant as such a place could be .

My totally non-scientific results were that breast and colo-rectal were the most common cancers there. Lymphoma was fairly rare, but one friend from a former job who had mantle came for fluids . 

The friend whom I have mentioined whom I took for prostate went to the other main infusion center in the group. It had about 25 open-bay stations and at least one private one for standard-therapies, and an adjacent infusion area for clinical trials only, with about a dozen or so stations. On a differnt floor there was a clinic which I believe did only SCT patients, but I never went inside there.

My mother-in-law down in Charleston had an ovarian cyst a few years ago (which ended up being benign) and went to an oncologist who had a solo practice, and did infusions in his office.  So, I guess, infusion centers vary dramatically in size and accomodations.

.

COBRA666's picture
COBRA666
Posts: 2418
Joined: May 2010

  I go every 2 months to have the port flush. I just can't believe all 24 chairs are full.  They have private rooms, but I can not see into them because of the curtains. There are other people waiting in the waiting room for their turn as well. It's hard to believe that many people have cancer. On the other side of the entrance there is a Cyber Knife room and there is not as many going in, but they are still going in. I have heard the nurses say it's not IF you get cancer, it's WHEN you get cancer now. When will it all end?????

anliperez915's picture
anliperez915
Posts: 770
Joined: Sep 2011

Hi Bill & Becky,

I will keep you both in my prayers that it's nothing! I also want to apologize for my late response, I'm just getting over pneumonia and haven't really done anything but sleep. I was sick for more than 3 wks and I just have to say that I'm a little stubborn and don't like to go to the ER unless I feel like I'm dying lol. Hope that whatever Bill had is the late effects and that is what is showing on the scan! I hate that you are going through this...you sound like a real angel! Stay strong sweet lady and I always enjoy reading your post!!! Take care (((Hugs))))

Sincerely,

Liz

illead's picture
illead
Posts: 604
Joined: Aug 2012

Thank you Carol and Liz.  No worries about late posting.  I have been absent too, think most of us have had winter forum blues lately.  Everyone sure came to our side when we needed you though and it has helped tremendously.  As I said before only a select few know at the moment so without all of you, we would be doing this alone.  We truly thank you for that.  I think we can all be assured that we're all here for each other when there is a need and that is so comforting.  Can you believe it?  Bill is fishing today!  What a guy Wink.  You are all freezing and he is fishing (and you feel sorry for him....Laughing)  Just kidding of course, without his optimism, it would be much harder.  Boy I hope that on Tues., I can write a red-faced A-ok.

BTW, it is overcast and 60 here in No. CA,  Before we got our much needed rain it was sunny and in the 70's, very unusual.  Our son and daughter-in-law live in NYC  tho, so we are suffering.....long distance....I know your're playing your violins Smile

Liz, take care of yourself.  Know what you mean though about going to the doctor. The pharmacist was the one who told Bill to go after 4 weeks.

Thank you two again for your kind words and of course everybody,  B&B

jimwins's picture
jimwins
Posts: 2109
Joined: Aug 2011

Down here they're called "fiddles" Wink.

Hugs & thinking of you guys,

Jim

forme's picture
forme
Posts: 1161
Joined: Aug 2010

Hi Becky and Bill,

 

I too try to read through the posts as often as I can. My hubby had surgery last friday and I got to be the nurse for a change. I am exausted ...

I'll be thinking good positive thoughts for both of you. Hopefully it's nothing much, but if it is, you both will handle it with courage and grace.

How wonderful that Bill is fishing today. The rain is supposed to return Saturday afternoon, but for now it feels a lot like spring. My daffodils have all started blooming in the past week.

Waiting for the newest grand baby to arrive, and have another baby shower to attend on Sat. Finally have some time to sew, hubby went back to work today. Hooray.

Take care and know that those of us that don't post often still read and send you and everyone all the best.

Hugs from the other Nor Cal resident

Lisha

girliefighter's picture
girliefighter
Posts: 221
Joined: Mar 2013

Bill and Becky,

I think it is safe to say that when someone is shaken to their core as you both probably are, we all feel it too....Sending you prayers, strength and love and hoping it surrounds you. We will all be anxiously awaiting to hear more on this. As with everyone else I am in high hopes that it is something else causing this.

XXXOOO

Carie

illead's picture
illead
Posts: 604
Joined: Aug 2012

     Thank you Lisha for your kind words.  Hope your hubby is ok.  Sounds like you are finally getting some time to relax after all that traveling, know that was trying with not feeling well on top of it.  Yes, my daffodils and hyacinths are blooming too.  We usually have some nice weather in Feb. but I never remember such a mild Jan.  The truck thermometer said 72 a little while ago.  Thank goodness there is more rain coming though.  Know the new grandchild is going to give you such happy times.

     Yes I agree Sue with what you said about posting.  We all have a life but we're here when it's needed, you guys have certainly proved that to Bill and

me.  I really mean it when I say that it has really helped.  I am actually pretty much able to put it out of my mind, but I know that as Tues closes in, it will be harder.  Bill had his Pet scan this morning and he went in to talk to one of our favorite nurses.  She said that if it's not good news at least she'll get to see us more Undecided

     And Carie, when I get down I will remember those pink gloves and just keep fighting, you guys are all amazing, no wonder this forum is so well thought of.

We appreciate you all, Becky and Bill

COBRA666's picture
COBRA666
Posts: 2418
Joined: May 2010

Becky,

  Thinking of you and Bill for tomorrows appointment. Good Luck and post as soon as you can about any news. Fingers crossed.  John

illead's picture
illead
Posts: 604
Joined: Aug 2012

As tomorrow gets closer I wake up with a harder and bigger knot in my stomach.  It was calming to read your kind words this morning.  His appt isn't until 3:00, I'm sure it will be major scanxiety. We're hangin in there tho.

Becky

jimwins's picture
jimwins
Posts: 2109
Joined: Aug 2011

Good luck today and know we're thinking of you as well as others here on the site!

 

coachmike
Posts: 153
Joined: Oct 2011

Sending prayers and love to your and Bill.

Mike

tall floridian's picture
tall floridian
Posts: 87
Joined: Dec 2011

Bill and Becky - I'm a 4th stage lymphoma survivor-in remission for just two years now and doing great thank God. Just a note to let you know that I'm praying for Bill and sending encouragement- praying that like myself Bill's cancer will remain in remission for many many years. Please keep us all informed of Bill's progress- God bless you both and family- Steve

illead's picture
illead
Posts: 604
Joined: Aug 2012

We are headed out in a few minutes, we will let you know.

Becky

 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 1349
Joined: May 2012

Remembering you guys at this very moment.

max

anliperez915's picture
anliperez915
Posts: 770
Joined: Sep 2011

Hi Bill and Becky!

Just wanted to let you both know that I'm thinking of you, praying everything is ok!

Sincerely,

Liz

illead's picture
illead
Posts: 604
Joined: Aug 2012

Don't know if you saw it but I updated some new info under the heading  Not so bad.  So that is where we stand for now.  We just keep on keeping on, Smile

Thanks again,

B&B

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