My husband was diagnosed with Non-Hodgkins Lymphoma (follicular B cell) 7 yrs ago. It was diagnosed as "indolent" and he has been on first Rituxin, then later on chemo (CHOP) then Rituxin again. His onc. stopped the Rituxin in 09. Ever since, he has had more and more high unexplained fevers. Now they have gotten to the critical stage and this past weekend his fever soared to 104. He was barely conscious, delirious and his eyes were rolling back in his head and he was moaning. I finally got the fever down, but it recurred the next day. The oncologist keeps trying to find the source of the "infection", but everything I've read says that fever is a sign that the lymphoma is raging in his body. Also, he has a mass growing inside a nerve sheath on his sacral (sp) bone at the end of his spine. They can't get to it to biopsy it, so they are "watching" it, as they don't even know if it's cancer. This mass causes tremendous pain in his left foot. This week, he has experienced a lot of confusion (such as thinking our horse that died 8 years ago is still alive) and disorientation; he was almost in an accident driving to the cancer center today to take his gammaglobulin treatment (that he gets every 3 wks.). I am worried that he may be having mini-strokes (TIAs) or that the lymphoma has travelled to his brain. Has anyone had anything similar happen to them? I'm also worried that the mass on his spine may have invaded his spinal fluid and gone to the brain. I don't have as much confidence in his dr as he does and he refuses to get a second opinion. I would love to hear any ideas, thoughts or just guesses. Thahks to you all. This is a great site. Although I don't suffer from cancer myself I've been his caregiver since diagnosis so I feel for all of you. Cancer changes your life like nothing else. Bless you all and thanks for any input.
God bless you for being so strong and compassionate. You and your husband are in my prayers. Also, it is helpful to have another opinion, it is his life and it should be what is best for him. Please, say a prayer when you can and ask Our Lord for guidance and He will be there for you and your husband. Take care and God bless you both always.
Hi, PeggieSue. I'm so sorry about the fevers and pain.
I'm my hubby's caregiver, too.
So glad you found this great group!
We are all here for each other.
I go with mine to his oncologist tomorrow. With his NHL, it's waith & watch for us right now.
You're in my thoughts and prayers.
Dear PeggySue, what a terrible and scary thing for both of you. Have they done any recent scans, body or brain to show if there is a spread of his Lymphoma? Do you have a family doctor monitoring these fevers and the confusion incidences sound very serious and may be from something else. Finally, is there a patient advocate where he goes for his shot or part of the cancer treatment center that would be able to send you in the right direction for tests and help.? He is very lucky to have you looking out for him and I pray you are able to get the help for him he needs. Sorry I cannot give you more info, maybe someone else on this site will. God Bless, Kathy
Hi Peggysue,So sorry to see your husband is having so many problems.Have been dealing with Follicular low grade stage3 since 1995 and done loads of treatments.I ask my onc to do a brain MRI a few years back and he did to assure me,this Sat. will be getting another done.There is no good reason why they cannot do a brain MRI given the problems he is having.Maybe you should insist.With those kind of high fevers going on why doesn't his dr have him in the hospital getting to the source of things?I'm with you and would want a second opinion.Has he had a recent PET/CT?My thought is it would light up if cancer was present in that bone area.Over the years I,ve talked with many cancer patients who have developed fevers some with not so good outcomes not to scare you.Others were hospitalized and in many cases the sources aren't always identified.So with that said it is very important for this all to be addressed.Please come back and let us know how things are going.Try and keep you chin up,Michele.......... Treatments:Radiation-Chop-Rituxan/10-Treanda/Rituxan-presently in treatment
What wonderful, compassionate people you are! I'm so glad I decided to sign up for this support group. I feel sometimes that my husband's cancer is not given as much attention by his oncologist because of his "indolent" diagnosis years ago. And it IS true that there are many people at that cancer center who are much, much sicker than he is who need immediate help. There's only one cancer center in our city, so it's overwhelmed with patients. I feel that he gets lost in the shuffle. He doesn't get much attention except when I SCREAM for it. Then they just want to shut me up, so they do whatever I want. I should not have to tell them what to do. He's never had a bone scan. How unusual do you find this to be with lymphoma? I understand it can hide out in the bone marrow and not show up on a PET scan. However, they assure me that if it was in the bone marrow, it would show up in blood work. Since I'm actually leery of anything they tell me now, I would appreciate your comments. Can it be in the "bone" but not the bone "marrow"? And thanks for the advice on the fevers. You've given me some ideas. I hope I can be of help to some of you. God knows, I've done enough research for years!! God bless you all.
Hi PeggySue, do you have a family doctor that could insist on a second? There are doctors who specialize in the different types of Lymphoma. It may mean you will have to travel, or they may even have a private practice where you could go see them. I go to MD Anderson because it has different doctors that only treat certain types of Lymphoma. Also being a research hospital, they are on the forefront of treatment. You do not have to go there for treatment, (if he needs treatment again) but they would be a good source to discover if something else needs to be done. Treatment can be done where you live. It is not difficult to get appointments set up there for a second. I have never felt that my form is not as important as someone who is going through a more agressive form because of how they are set up. Granted I see many people there who have terrible forms of cancer but I don't get the attitude that they have a priority because of it. The techs and nurses treat everyone professionally also, which really makes you feel good when you are dealing with so much testing. Also, when I went there for my second they re-ran all the test I had before, including doing another bone biopsy. This is an important test because you can have my type (SLL) in the bone and it not show changes in the blood tests. The same concerning node biopsies. My blood work had only a few issues, but none that would show Lymphoma, it was the node biopsies that revealed that. So they did additional biopsies in another area of my body to rule out transformation. There are other large Cancer Centers in the country that operate like this so if you go to the American Cancer site they should have other big research hospitals listed. Bottom line is you need to find out what is happening to him and that sounds like it needs to be done somewhere else. All doctors tell you to get a second, it is one of the most important things you can do for your care. It does not mean you are betraying your old doctor. It may turn out he is right, or that he needs additional info through tests. I asked my doctor once what she would do if it was her, and she responded, "Get a second!" They are all working for the same goal, helping the patient, what difference does it make who does that? Good Luck and please let us know how it goes. To check out MD Anderson, they have a very good web site. My husband also went there for his Prostrate cancer, (it also his second opinion) and had it removed by the number one doctor using the DaVinci robotic machine. I am not telling you that to brag, but to provide an example of how important it is where you go for care. We live near Austin and they are just now using this machine to perform his surgery that he had 2 yrs ago. He could not have waited 2 yrs for that surgery and he had no other options, so it would have been the old standard way with weeks of recovery or the new way. He is still cancer free and had a very easy recovery. I will keep you both in my prayers and hope you get sent the right direction, Kathy
Hi, All. Hope everyone's day is going well today.
Just back from hubby's onc and learned the average prognosis for his nhl is 5 - 10 years.
What exactly does that mean? I was afraid to ask in front of him.
Of course, it varies and depends on if his cancer becomes more active (as it may do; sometimes it doesn't, his dr. said).
Thanks for any help. Just want to be prepared (if ever we can be, huh?)
Hugs.
I believe they are giving you a timeline for living.That’s awful, did you hubby ask that question or was it offered?HecK is that’s the case I’m writing this from the great beyond.Good lord!!!Hugs back at you,Michele
Hi PeggySue,My mouth hit the floor when I saw what you wrote about indolent lymphoma.That should have not one thing to do with this and getting proper treatment.I agree with Kathy,sometimes you can call and sent reports to be viewed.Does your hubby not realize this is his life your talking about.I have never had a cancer bone scan myself but had no reason to have it done.Have had bone marrow biopsies done.Bet your going to say he never had one of these either???Not sure about what you ask if it can hide out in the bone but not the marrow.My Guess would be no.Maybe someone else here will see this and answer.Not sure about the bloodwork showing it either.My lymphoma didn't show anything with bloodwork at first.I hate second rate when it comes to care.Just inexcusable.Take care,MicheleDx95
Hey, Peggy Sue.
My dh has nhl and had a bone marrow biopsy with his onc. For him, it showed he had indolent lymphoma in his bone marrow. His dr. said he did not need a PET scan.
Each type of lymphoma is different.
Wishing everyone all the best!
Dear Nature, can't believe now days any doctor gives out that info. It has been proven false so many times. I read the stats on my type (SLL) and got really scared and even started to live that way for a while, which was understandable but wrong. They have no idea how long a person has, and giving them a range of 5 to 10 is pretty broad. You could give that range to every baby boomer out there right now without them even having Lymphoma! Look at the changes that have taken place in the last 5 years with re-classifying all the different types of Lymphoma. Look at the treatment options with the drugs alone. I believe we are very close to creating vacines against certain kinds of Lymphoma and new drugs are always being developed to change the prognosis. Those tables are old and not reflective of what is happening in this field. Who wouldn't freak out with words such as incurable etc. Heck I'm and incurable romantic. I look at it that, it is what it is, these indolent forms stink, but for whatever reasons we are stuck with them until they find a way to un-stick us. Yes, in the back of my mind I still think about reading those stats, but as time has gone on I think I am loving life a little more than before.
What if God said, "You can be healthy for the rest of your life or have an indolent, incurable cancer." Sure, we'd jump at the first option until He adds, "I forgot to mention, during your second healthy year you get hit by a bus!" And then paused and added, "that slow growing cancer will have in cure within 7 years!" Re-do anyone? Your husband is blessed to have you in his corner. My goal is to be the oldest person still doing the Watch and Wait and I am pretty competitive, so tell your husband to challenge me. We will beat those stats into the ground!
Hugs to you and PeggySue for being great spouses! Kathy
Peggysue, as a surviver I know what he is going threw. Keep the faith and press on. It takes a strong person with much love to care for some one that is afflicted. My wife has stood by my side also. God bless you and I will pray for you and all that is yours. Stay strong and don't bank on just one Dr. Ask allot of questions and be confident by knowing that every answer has more than one definition. I hope you understand...
Blueblaze74
Hi, Peggysue! Sending good thoughts to you.
OT - Preparing for a hurricane:
As caregivers, it's good to be prepared.
So good to have a plan and a to go bag ready and handy.
They say it's good to have enough supplies to last for 3 days like you're camping in your own home.
With flooding here, the gas pumps don't work and neither do the ATM's.
I fill every pitcher and bucket with water. Even the bathtub (sealed with petroleumjelly - can use that water for the toilet, when there's no running water.
Some get their favorite snacks - not the time to always count calories - comfort food for a day for 2 is ok in this case.
Bread, too! Peanut butter, crackers, bottled tea, etc.
Manual can opener. Cereals. Granola bars, shelf stable foods.
Keep important papers in sealed ziplock bags. Bring ID, insurance papers, credit cards, cash.
I even buy tuna, shelf stable pudding cups, sodas (in case the water is not drinkable for a few days), hubby will eat Spam, kids like pretzels & chex mix, bottle of juice, canned fruit & veggies.
I don't hoard bottle water, but do get enough for 3 days.
Pets - with canned food, that way they are getting some fluids, in case they don't drink when evacuated.
Bring in potted plants and patio furniture. Could become projectiles.
Please take care. Better to be safe than sorry. Sooo hard to get supplies after the storm, when everyone needs the same thing!
I felt compelled to share this. I'll stay on topic from now on.
Prayers for all those on the eastern part of the U.S.