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Sorry that I haven been posting

Chris17's picture
Chris17
Posts: 175
Joined: Oct 2010

The last 6 months have been up and down with different things going on post chemo, been to urgent care several times , to the ER twice with kidney problems , been suffering severe sinus infections due to retuxin, and now for the last 6 weeks i have had a fever that wont go away and it seems that tylenol does not have a full affect, had numerous labs, blood cultures and x rays done and nothing is wrong my primary says i called me oncologist and saw her and now i am going on monday for a CAT scan and later that week for a sonagram,i dont understand that they say nothing is wrong, is having a fever for 6 weeks normal? My oncologist finally said there is a possibility that my cancer is back, and she will want a bone biopsy soon,first thing im thinking is here we go again,i was numb when i left her office,so i hope its not back and the scans can prove it is something else going on, will post more when i learn the results, and again im sorry for not posting in the last few months
Chris FNHL stage 3 hopefully still in remission

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

Hi Chris,
I'm so sorry the last 6 mo's has been so difficult for you. Common sense tells me that running a fever for 6 weeks is absolutely NOT normal. I find it disturbing that your doctors let this go on for 6 weeks...one week in my opinion is enough time to show that something is going on in your body to raise red flags. With that being said, I'm glad to hear your doctors are NOW taking the needed steps to find out if your cancer has come back. This is something all of us have to live with the possibility of happening, and all we can do is watch and wait until symptoms appear and then deal with it. My heart hurts for you and can only imagine how scary this must be. Remember we are always here for you and will do our very best to give you comfort and support while you wait to find out. My best wishes, positive thoughts, and prayers will be with you. Take care, Love..Sue
(FNHL-2-3A-6/10)

Chris17's picture
Chris17
Posts: 175
Joined: Oct 2010

Thanks Sue, my onc called me early the other morning to tell me another result was in , my liver enzymes are high and she wants an ultra sound done as well, tomorrow i go for the CAT scan and wednesday i go for the ultra sound,the fevers are still on going onc said just take tylenol like its a fix all, im really tired all the time,sleeping alot and i wont know whats going on until the end of this coming week, its aggravating, and depressing at the same time, and its not easy waiting around for an answer, will post more when i have results
Chris FNHL stage 3 hopefully still in remission

forme's picture
forme
Posts: 1162
Joined: Aug 2010

Hi Chris,

So sorry that you are having so many health issues right now. I have had periods of fevers for many many weeks in a row. It is so tiring and frustrating too. I hope that your onc will be able to find the problem and that it will be something fairly simple. The waiting is the hardest part. I've been waiting a long time. Lame..

Hoping and praying you are still in remission. I'll be looking for your post on the results. Sending you positive energy for your scan and ultrasound.

Peaceful healing
Lisha

Chris17's picture
Chris17
Posts: 175
Joined: Oct 2010

I got the results from the CAT scan and the ultrasound shows nothing, but my onc wants a PET scan now as that is the test that found the cancer when i was diagnosed, she still wants a bone biopsy and im not sure i can handle that again, i told her that i want to be given twilight sleep or something similar, i was traumatized when i had the last one, so i will wait for the x ray people to call me and make the appt, i am so tired of scans and being jabbed with needles when i did the CAT scan last Monday when they inserted the IV they blew a vein, my arm hurts and is black and blue,and i know when i go for the PET i will be injected again( by the way i forgot to mention the vein they blew was the only working one i had left)does it ever end?Will post more as results come back, ty for letting me vent, was either vent here or curl up in a ball and cry.
Chris

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

Hey Chris,
No curling up in a ball...just get on here and vent away. I'm so sorry you have to go through all of this. Do you have anything you can take to calm your nerves while waiting to get the tests completed? I sure hope so. Be sure they give you something before your bone biopsy...I swear I will NEVER get it done again without being knocked out. I'll have you in my prayers Chris...try to stay as calm as possible..I know, easier said than done. Much love...Sue
(FNHL-2-3a-6/10)

Chris17's picture
Chris17
Posts: 175
Joined: Oct 2010

PET scan will be done next Wednesday at 8:45AM so another long wait to wait and see,i hate waiting so long,but i will try and be patient will give my arm a chance to heal for the injection.Will be glad when this is over, im tired, mentally and physically,but it is what it is, will post when the results are back from that.
Chris FNHL stage3 hopefully still in remission

Chris17's picture
Chris17
Posts: 175
Joined: Oct 2010

Sue ty for your kind words means alot, i will be alright, i have made it this far.
Chris

JoanieP's picture
JoanieP
Posts: 573
Joined: Mar 2010

So sorry to hear about all you are going through. My husband's enzymes were high from taking tylenol with the shingles. I tell my Dr. I do not want to wait for results on a Pet scan. He calls within a day. I hope you hear good news soon!!!!!!! Take care and God's blessing at this difficult and frustrating time. Thinking and saying a prayer for good results.

Chris17's picture
Chris17
Posts: 175
Joined: Oct 2010

Well now the wait starts , i had the PET scan yesterday, the fever is still around, and my nerves are shot, will keep good thoughts as best as i can,Joanie thanks for your words of support means alot to me, soon as i know the results i will post.

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

Hi Chris,
Geez...still with the fever?? I can only imagine how shot your nerves are! Well...we are sitting here waiting with you and sending good thoughts and prayers your way. Hang in there friend. Much love...Sue (FNHL-2-3A-6/10)

dixiegirl's picture
dixiegirl
Posts: 1043
Joined: Apr 2006

Oh Chris,, I am so sorry you are going through so much right now. I understand completely how frustrating waiting is.

I will keep you in my prayers honey and hope the fever breaks soon. Just rest when you can and know there will be answers soon.

And BTW, cry if you want to, just make sure to stop after a short period of time and don't keep crying for days...you need to be able to see you know.

Take care,

Beth

Chris17's picture
Chris17
Posts: 175
Joined: Oct 2010

Thank you ladies for all your concern and good thoughts as i know you have your own battles to fight and i wish you good thoughts as well and lots of prayers hope i hear something by tomorrow as far as crying its a strange then i havent really cried since this all started back in April 2008, i guess im overdue,ladies again i thank you all and will let you know as soon as i hear anything.
Chris FNHL stage 3 hopefully still in remission

miss maggie
Posts: 929
Joined: Mar 2010

Dearest Chris,

You posted your post on June 2, Thursday. Today is Friday. I certainly
hope you hear positive news before the weekend. If not, I would give my
doctor a phone call. Hmmm, maybe not.
My husband had a CT scan for his discomfort in his abdomen on a Thursday.
On Friday our doctor called with the DX pancreatic cancer. Since he was
at work, I decided not to tell him until Monday. I wanted him to enjoy the
weekend, especially since he was playing golf on Sunday. Pancreatic Cancer
is very rough, he passed away exactly 2 years later.

Thankfully our Dx is treatable. No matter what the pet scan shows.

I will look for your post. God speed. Love Maggie

Chris17's picture
Chris17
Posts: 175
Joined: Oct 2010

Well PET scan is ok onc said but she wants to send me to a cancer center for a second opinion, she will see me tuesday for a final exam before she will refer me, so i still dont know what is wrong, but she said the only true way to see if its NHL is to have a bone biopsy, so im hoping that when i get to go to the cancer center i can ask about having it done under anesthesia, so again i will post after i learn more, it seems like it never ends, fever is still on going last check was 99.9 earlier was 100.0 this is week 8, im really tired of this , all i want is my life back the way it was but i know my life will never be the way it was before, all i want is to know what is wrong with me,ty for your reply maggie, means alot.
Chris FNHL stage3 hopefully in remission

miss maggie
Posts: 929
Joined: Mar 2010

Dear Chris,

I am so happy your oncologist said your pet scan looks OK. I will look for your post
about Tuesday's doctor visit. Your oncologist looks like she is taking every precaution,
that's good. 8 weeks of a low grade fever?? Is it possible there is a bacterial infection?

Oh yes, please get anesthesia for the BMB. I have had only one BMB, and it was not pleasant.
On Tuesday, get a prescription for anxiety medication. I know nothing about the anesthesia
VERCET, but I saved this post from long ago. See what the doctor says? MAKE SURE WITH BONE
MARROW BIOPSIES YOU HAVE VERCET GIVEN. I understand their is no pain, and no memory of BMB.

Getting one's life back to normal. Oh yes, I understand how sad and tired you are.

Hugs and all my love and prayers Maggie

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

Hi Chris,
Glad your getting the second opinion...certainly need to get to the bottom of this fever you have going on all of the time. I absolutely agree with Maggie about getting sedation for the BMB. There is no reason EVER having this procedure done without being sedated. Hang in there Chris...one of these days things will start to turn around for you...you just have to keep the faith. As always...my prayers are with you. Keep us informed dear.
Much love to you...Sue (FNHL-2-3A-6/10)

Chris17's picture
Chris17
Posts: 175
Joined: Oct 2010

Thanks Maggie for heads up on the Verced i will tell the Doc i will see for the second opinion and hope they will agree. Sue thank you so much for your prayers and good thoughts, thnaks to all who posted here, its nice to know that people still care which seems to be a rare commodity in todays society, again thank you all it means so much.

Chris

miss maggie
Posts: 929
Joined: Mar 2010

Dear Chris,

I will look for your post Tuesday evening or Wednesday morning. Let all
of us know what the outcome was.

Good luck tomorrow, Tuesday. Same prayers going your way. Love Maggie

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

Same here Chris...good luck tomorrow and I'll be waiting to hear whats up, right along with Maggie and everyone else. My prayers are also coming your way, along with some good positives vibes. Hang in there friend...Sue (FNHL-2-3A-6/10)

Chris17's picture
Chris17
Posts: 175
Joined: Oct 2010

Well i just got back from seeing my oncologist, she went over all results with me and told me that she cant find anything, so she made a referral for me to see a lymphoma specialist, she said he may see something shes missed or can maybe think of another test etc, i spoke with her about the Verced, she said that the doctor 3 doors down from her uses that for colonoscopies that he does and she will look into it as i told her that it can be given by mouth as well, she wasnt even aware of that,so hopefully she will use it for future patients she gets and they wont have to suffer, i will call the specialist tomorrow and make the appt, that way my doc will have time to fax my records to him,and get the ball rolling as to what is going on with me,thank you all for your concern and i will keep you posted on what will happen, im praying that i will find something out soon,i feel like im in limbo, but will try to keep good thoughts and be patient.

Chris FNHL stage3 hopefully still in remission

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

Hi Chris,
I can't remember which lady in our group talked about Verced, but I remember her saying it was great. Glad to hear you will be getting it also. I sure hope the Lymphoma specialist can get to the bottom of this fever thing you are dealing with...it's been way to long to keep dealing with daily fevers. You will be in my prayers as usual...soon my friend, you will hopefully get some solid answers. Hang in there...Love...Sue (FNHL-2-3A-6/10)

miss maggie
Posts: 929
Joined: Mar 2010

Dear Chris,

Thank you so much for posting so soon. The good news I think, your doctor can't find
anything. Your doctor sounds wonderful passing you to another specialist to make sure.
Yes, you have to found out why you have a constant fever. Sue is right.

I am so glad I posted about the Vercet Or is it Verced? No matter. As long as the doctor
knew what you were talking about. Great news about finding a doctor that will give Verced.
I never knew you could take it by mouth also. Thanks for the info.

I pray you are still in remission also. Hugs and love your way. Love Maggie

Chris17's picture
Chris17
Posts: 175
Joined: Oct 2010

I made the appt for the second opinion it will be June 20th, i looked the cancer center on line and wow this place is huge,its very impressive, i just hope they can find out whats going on with me this is the link to the cancer center

http://www.northshorelij.com/NSLIJ/Monter+Cancer+Center

its another wait and see, but im getting used to the waiting,all i want is an answer as to whats going on with me, seems no one can figure it out,i sure hope this doc can.

Chris

miss maggie
Posts: 929
Joined: Mar 2010

Dear Chris,

I'm with you. I have a feeling you will finally find out about your fevers.
Probably nothing you would expect. Hopefully nothing to do with NHL. So glad
you and your doctor are not letting this go.

Have you done any research online about NHL and fevers?

Just try and remember, if you can???? Most times we worry ourselves to death,
and everything in the end turns out OK.

All my positive energy your way. Love Maggie

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

Hi Chris,
I went to the web-site you gave us and I must say...this place appears to have it all. I can't imagine that you will walk away with no answers to this fever problem. Very impressive.I'll be thinking good positive thoughts for you. Let us know when you get some answers. Much love...Sue (FNHL-2-3A-6/10)

JoanieP's picture
JoanieP
Posts: 573
Joined: Mar 2010

I am glad that your Dr said it looked good but glad they suggested a Lymphoma specialist to get to the bottom of the problems you are having. Thinking of you . Joanie

Chris17's picture
Chris17
Posts: 175
Joined: Oct 2010

Thank you joanie for posting, I got a call from my oncologist yesterday saying she made an appt for me to have an echocardiogram she wants to see if i have an infection in my heart due to the fevers i have been having so i go Thursday and Monday is the specialist, im so tired, i hope someone has an answer for me soon, my patience is running thin. Will post when i learn more.
Chris

miss maggie
Posts: 929
Joined: Mar 2010

Dear Chris,

Tomorrow is thursday. Will you be getting the echocardiogram tomorrow. I
certainly hope so. Just had a thought, is everything OK with your teeth,
and gums?

Yes, please post as soon as you know something. Love Maggie

Chris17's picture
Chris17
Posts: 175
Joined: Oct 2010

Well i went to the cancer center, met with the doctor who was very nice, he read my reports, scratched his head a bit, asked me some questions, one question he asked was if i ever had a postive TB reading, i said i had like 20 some odd yrs ago, he said that he would have me do labs to see if that is an issue, also did another HIV test, when i went to the lab they took about 12 vials of blood and 2 bottles for cultures, he seemd a bit baffled as to why the persistent fevers going on now for almost 3 months, he insisted on me having the bone biopsy, said that would be the only way to rule out if it is cancer, so i am thinking about it, i stressed to him how i was traumatised last time , he gave me a script for ativan and said the day of the biopsy i am to take 2 pills instead of 1, my regular onc called me to say the echo was good, no fluid in the heart,i asked my reg onc what if the bone biopsy comes back ok then what, she said then i liver biopsy will be next, i told her no way, i am not going thru anymore,i am tired, my body is tired, i am mentally and emotionally drained, dont think i can endure anymore, when i get the results of the lab will post more.
Chris

dixiegirl's picture
dixiegirl
Posts: 1043
Joined: Apr 2006

Chris,

Please don't give up on the testing. I know you're tired of this, but you can't just let it go. It could be something very simple with the right testing. Hang in there sweetie!

Beth

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

Hi Chris,
I have to agree with Beth on getting the testing done. I understand how frustrated your feeling, but in order to find out whats causing the fever, further testing will need to take place. When will you have the BMB done? When you have blood work done does your ONC check your liver and kidney enzymes. My ONC told me he has mine checked everytime blood is drawn to make sure nothing suspicious is showing in the kidneys and liver. Please reconsider doing the liver biopsy. You are stronger than you think, even though you may not feel very strong right now. I'm so sorry it's taking longer than you want to get to the bottom of whats going on in your body. Are you taking an antidepressant to help calm your nerves? If not, it might be a good idea to talk to your doctor about starting...at least until you get through all of the testing. I take a low dose of Xanax at night before bed. Well...I don't know what else to say friend. You know we are here for you, and I will keep good thoughts and prayers coming your way. Don't give up, you CAN do this. Keep us informed.... Much love...Sue (FNHL-2-3A-6/10)

COBRA666's picture
COBRA666
Posts: 2413
Joined: May 2010

Chris,
I can understand how you feel. I have asked myself so many times if I needed all these test again,could I do it. I think about bone marrow biopsies and what if I need a liver biopsy. All kinds of thoughts go thru our heads. I tell myself I don't know if I could do it or not,but I would if I had too.John

miss maggie
Posts: 929
Joined: Mar 2010

Dear Chris,

I agree with Beth, Sue and John. Hopefully, you will continue to have
the tests to find out about your continuous fever. You can't give up now.
I can understand feeling as you do. I just hope this feeling will change,
and you will be more hopeful. Someone I know has hepatitis C. She has had a
liver biopsy, and it's not as bad as you think. Thank God there is no fluid in
your heart. I am not sure about the ativan, I think I took that, and also an
injection of something similiar before the BMB. I would try and get something stronger, if not
Vercet, and why not? I agree with Sue, I take Paxil daily. It really helps me.
Ask your doctor for an anti-depressant.

Chris, keep going, please. You went so far already. All my strength I send you.
Along with my prayers and love. Love Maggie

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