CSN Login
Members Online: 4

You are here

Still in Shock--Wife Just Diagnosed w/ Non-Hodgkins B-Cell Follicular Lymphoma Stage IV

friendm7
Posts: 6
Joined: Jul 2010

Wife just diagnosed w/ Stage IV NHL (Subtype: B-Cell Follicular) on 12 Jul 10 and I am a complete mess. Looking for a support system to help get me and my family through this. I've been through just about every emotional state for the past 30 days since she went in for a regular checkup for what we thought was a muscle pull on her left side. Ended up being full fledge pnemonia, 1.6 litres of fluid in her left lung (which had to be drained) which was partially collapsed. Ran a ton of tests, PET scan, multiple CT scans, etc. and two different biopsies and ended up w/ this. Just took 30 days to finally prove it.

Treatment will start on Mon, 19 Jul w/ Rituxin and Bendomustine (sp?). I'm in the Air Force stationed at Hickam AFB Hawaii and the treatment is happening at Tripler Army Medical Center. Looking into humanitarian reassignment options back to Wright Patterson AFB OH (one hour from Columbus where we are both from and our parents reside).

Both of us our 39 years old...two girls (Ally/11 and Kyla/7).

Any words of advice to a new member...treatment options, cancer facilities in Hawaii (Honolulu) or Ohio (near Dayton or Columbus), which are better, etc. Or any encouraging words on expectations, how a spouse can help, how to deal w/ the dreaded "C" word w/ kids, etc.

Thank you in advance for your replies.

V/R
Mark Friend

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

I know this sucks.........BUT Lymphoma is very treatable and stage doesn't mean much of anything with NHL. Treatments are not fun, that's for sure but she CAN do this. I was 41 when diagnosed and it's ok to be worried my friend.

Just be there for her when you can. My hubby was traveling during my bad days and sometimes all we had was a phone call...and it WAS enough. Cancer is hard and treatments aren't easy either. She may need some help during the bad times....or she can leave the housework for the times when she feels better.

The waiting is by FAR the worst and 30 days isn't that uncommon. I was doing antibiotics and doc appts for 3 months.

It's ok...you are in the right place! Have her come here too as well as the chat rooms.
Take Care,
Beth

merrywinner's picture
merrywinner
Posts: 627
Joined: Aug 2009

But you have come to the right place. The people here are kind,compassionate and full of knowledge and experience. I don't want to overwhelm you with all sorts of information just now. I am not familiar with facilities in the areas you mentioned but know that there is much that can be done any many treatments. I don't know weather a second opinion is an option but is generally a good idea. Rituxan is usually one of the first choices and highly successful. Not sure what that second drug is. Good luck and tell your wife that we are here and want to help. I don't know about any others,but I have experience with the fluid in the lung thing. Mine was in the pleural space or the sack that the lung is in. Keep us posted and I'll send some prayers your way. Mary

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

Mark, I have nhl stage 4 follicular also. Let us know more about your wifes case and we can help and guide you more accurately. Where are the tumors located? There is a lot of info on this site from the members and they will be your best friend . They know what you are going thru. They have all been there. I was there just a short time ago and I can relate to your being a mess. You feel like you are alone in this battle. You have come to te right place for info and support. Just a little bit of info. Its ok to check the latest updates from various sites, but don't get to involved in them. Some are old and out of date. They have a tendency to really confuse you. I went thru that before I was aware this forum was even on here. You will find the people here are really supportive and informative. John

friendm7
Posts: 6
Joined: Jul 2010

John,

5.9 x 3.7 cm mass encasing the abdominal aorta. Also, a 2.6 x 2.1 cm soft tissue mass in the mesenteric portion of the small bowel. Not sure if these masses are cancerous; however, removed four lymphnodes and conducted biopsy which proved the lymphoma. Docs saying the mass around the abdominal aorta is nearly impossible to get to...and it really doesn't matter as it won't change the treatment plan.

Any/all advice is greatly appreciated.

Mark

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

Hi Mark,
I am new here also.I am 59, married, with 2 grown sons and 2 grandchildren. I live in Yakima, Washington. I was diagnosed on June-16th-10 with Follicular NHL...stage3...Grade 2...Type A. I have tumors in my left groin, abdomen and left side of my neck. This past Tuesday I had a bone marrow biopsy and currently waiting for the test results. I haven't started treatment yet and won't until we find out the results of the BMB. If the test results come back positive then I'll advance to a stage 4 which will be treated the same as stage 3(from what others here have told me). I am still a "mess" so don't feel alone. My hubby is also a "mess" and learning daily how to cope. I joined this group on July 8th and it has been a "God" send! Prior to joing I spent endless hours searching the net for information about NHL...NOT GOOD! Talk about Bing over-load. People here in this group are going through, or have gone through, what we..(your wife)and I are "about" to go through. Who better to ask questions of than those that have gone before us? You have definetely come to the right place and will be very happy here. I hope your wife will join you in support here.Right now I will not be much help to you for information on the cancer or treatments, but I sure can be supportive. Sounds like your wife will be getting started with treatment before me so I will be anxious to hear how she progresses...please share. We will get through this...together. My prayers are with you, your wife and family.
Sue

friendm7
Posts: 6
Joined: Jul 2010

Know what you mean about the Bing over-load:) Only mine was Web-MD and google overload:) How was the bone marrow biopsy...heard that one was a killer. Good part is that it only lasts 30 minutes. Trina hasn't had that done yet but it has been mentioned.

Treatment starts on Monday so I'll let you know how it goes. Now, if I can only get my wife to join us on here. Up to this point, she's letting me do all of the research. Doesn't really want to read much about it. Perhaps, it's because she has enough on her mind already. I figure with due time she will want to know more. Right now, she's just leaning on me for the information.

God bless...you are correct, we will get through this TOGETHER.
Mark

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

Hi Mark,
Just give your wife some time to adjust. She's fortunate you are comfortable in doing the research. My husband was so afraid the first week we found out that he wouldn't even say the word cancer.He is fine now and actually has become very protective of me and proactive with the insurance co, clinic appts, bills etc. Yes...the BMB was pretty rough for me and unfortunately took a little longer because of dry marrow issues. I've moved on and have put it out of my mind. My hip is hardly sore today so that makes me happy. I'll be thinking good positive thoughts for your wifes treatment to go well on Monday. Keep us posted.
Take care...Sue

onlytoday's picture
onlytoday
Posts: 603
Joined: Jun 2010

My thoughts and prayers to you and your wife. Getting this diagnosis is so upsetting. I had a biopsy on May 17 and got my diagnosis on May 27. It IS so shocking and so scary but what I have learned is that NHL is extremely treatable and her's (Follicular) is one of the most common types and so there has been and will continue to be tons of research done for it. The treatment she will get is a good one, and is very effective at getting the patient into remission.

Finding this site will prove to be a gift for you and for your wife. So much support and caring here not to mention a wealth of up to date info.My best to you both and just by being on here you already are doing all the right things. Just love her and support her and you all will get through this. Stay in touch.

Hoppy23
Posts: 26
Joined: Jul 2010

Hi Mark. I am very sorry your wife and you have to go through this. My husband has been diagnosed with Follicular Lymphoma stage 4 last february too. Also B-cell. So I can TOTALLY understand what YOU must be going through. My husband finished 6 cycles of R-CHOP so far and he's doing well. There are some days he'd be totally out of it, but it IS doable. He's 44 and is otherwise healthy. I am sure your wife will be able to go through chemo with as little side effects as possible.

If you need anything, even if it's just a talk. send me a message ANYTIME.

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

Hoppy,
How many rounds of chemo is your husband scheduled for? Some have 6 and others have 8. I am scheduled for 6 and just completed round 2. John

Hoppy23
Posts: 26
Joined: Jul 2010

He'll be having a total of 8 John. He had a CT scan after the 4th and his nodes and spleen were still enlarged, so his doctor said he'd get 8 . He had a PET scan doen a few days ago, but won't know anything until after he has another bone marrow biopsy. This BMB is scheduled for tomorrow and after we get the results for it and the PET scan, we'll know if he's in remission or not. I am praying for the best. ON the CT scan, the radiologist asked him to have an U/S too on the spleen because the lesions were not very clear on the CT scan. This time on the PET/CT scan, they didn't ask him for an U/S so I ma hoping this is a good sign.

I'll update you all as soon as we know where he stands.

When will your doctor make you have a PET scan? After round 3 or 4? A PET scan is better to tell if the lymphoma is active or not, but since we were paying for it out of pocket, hubby's doctor opted to make us go for the CT scan because it's a lot cheaper. The nodes could be enlarged but no active cancer, if you know what I mean.

Good luck.

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

I really am not sure when I will have the scan. He probably said but being in the state of mind I was in I do not remember when he said. I have to go back after my next round for an appt. so I am sure he will schedule me then. Right now, my insurance is paying everything. Hope this ins. overhaul does not put a stop to that if you know what I mean. John

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

Hoppy,
When you say B-cell what is the grade? 1,2 or 3. Mine is indolent grade 1. John

Hoppy23
Posts: 26
Joined: Jul 2010

Grade 1 John. He was first told it was grade 2 from the lymph node biopsy at one lab. Then we had the node checked in 2 other labs who said it was grade 1. BUT he has B-symptoms. he had them for almost a year prior to diagnosis.

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

Hoppy,
Never had any of the b-symtoms. No night sweats,No weight loss, or Temp. I did notice when I was on the computer I would start to sweat for no apparent reason, but I had been doing that for years. Never woke up in the middle of the night sweaty though. My weight never changed excepted it would go up or down maybe 3-4 lbs., but basically stayed the same. Which symtoms did your husband have? John

Hoppy23
Posts: 26
Joined: Jul 2010

John,
He had almost all the known and unknown symptoms related to lymphoma. He had low grade fevers for a year, he had night sweats, fatigue and severe depression. His night sweats got crazier over time and we had to change his pajamas and sheets daily, he'd soak the pillows too. He also said he used to breath warm air. Like he had fever on the inside that didn't show on the thermometer.

He also had SEVERE joint/bone/muscle aches for months and we thought it was rheumatic pains, or maybe from the very cold a/c, or from any other reason. he was seen by maybe 4 doctors, nobody suspected lymphoma. One doctor even told him it's something mental, and gave him a pill like prozac. He had shingles months ago too, and it was very odd at his age. When I saw how much pain he was in and nobody is doing anything (we even suspected swine flu at one stage), I just picked up the phone, called the phone directory and asked them to give me any doctor's number specialized in blood diseases or immunity diseases. They only gave me his current oncologist's number and the moment she put her hand on his armpit and found this enlarged node, she KNEW. Once he had that lymph node removed to be biopsied, ALL his symptoms were gone !!! His internal fever like was gone, he wasn't sweating and his body aches were gone too. Weird huh?

Oh...for the year before diagnosis, his aches would be on and off...like they'd come for a week every month or every 3 weeks, he'd take antibiotics and feel better instantly. AT one point after diagnosis, one doctor told him how weird it was that cancer symptoms he had were relieved by taking antibiotics.

When he had a CT scan to properly stage his cancer, ALL his lymph nodes were enlarged, and his spleen was too showing more than one lesion of cancer too. His Bone marrow tested positive as well, but we never knew how much of it was affected. I guess all that is what made his onc decide on the R-CHOP not R-CVP or Rituxan alone. His was an indolent kind but was EVERYWHERE.

Hope that helps.

friendm7
Posts: 6
Joined: Jul 2010

Wow...that's what's crazy about this. My wife had absolutely none of those symptoms. No enlarged lymph nodes in the neck, no night sweats, no fever, no weight loss, etc. No kidding, she went in for a muscle pull and we end up w/ this. Unbelievable...truly makes you refocus your priorities on what's truly important.

Hoppy, added you to my friend's list...looks like we have alot in common.

Thanks
Mark

truckingalong
Posts: 444
Joined: Aug 2010

Hi, Hoppy23,

Wow, that is interesting to hear about those similiar symptoms I have had in the past year. I had ovarian cyst removed (benign) then after that, I went downhill - guess I had 2 things going on the same time - going through surgery that was not related to lymphoma. Anyway, I had low grade fever, warm - not with thermometer but generally feeling very fatigued and had severe joint/bone/muscle/nerve pain all over my body, especially at nights - those were pain attacks so I had to take large dose of Ibuprophen and that did the trick. Then came the enlarged lymph nodes. My dr. gave me antibiotics, vitamin B12 injections, iron and other vitamins which helped a bit. The body pain went away and my energy came back but only til few months later, I had fatigue attacks again and my enlarged nodes appeared in my groin and this was when I had the biopsy to find that I have Hodgkins lymphoma. What a surprise and I felt my surgery of the cyst and those antibiotics delayed in finding out my diagnosis by one year. I wish all doctors would be educated simply about those symptoms because 1 in 6 people have cancer ... why can't doctors know generally about this stuff? Sigh - but am ready for treatment that will start in 2 weeks. Thanks for sharing and I don't feel alone. :)

Liz

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

Liz,
I heard the same thing about 1 in 6 people having cancer. My onc said it should be 1 in 6 DIAGNOSED with cancer. The stats would be a lot higher if everyone that had cancer was actually diagnosed. So sad!!!!!!!

truckingalong
Posts: 444
Joined: Aug 2010

John,

That is right. Real sad. Well, I had skin cancer on my eye brow few years ago but it was just a nip in the bud. That is it. It was very common and easily taken care of but not THIS!! I am scared of the chemo - what it will be like on my first round coming up on Aug 30th. Will I become something I am not? Am trying not to think about it...

Thanks for the support.

Liz

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

Liz,
No, this stuff is not easy. The only thing right now that knocks it down is the chemo. We all react differently to the treatment. I was scared as well from all I heard about chemo and its effects. So far it has been pretty good except for the first round. The first one knocked me down pretty good. I kept thinking I hope they are not all like this. Each one for me got a little easier. I go for round 4 next week and hope that one goes as easy as the the last two. I do have days where I feel tired, but nothing that really keeps me from doing what I want. Others have said just the opposite. So its can be one extreme to the other. I feel your first one will be the worse. Thats when a lot of changes happen to your body and a lot will be going on. You will have bad days and you will have good ones too. Your first day of treatment will be the longest. Probably a good 7-8 hours. They have to make sure there is no reaction to the chemo so they have to be put in slowly. With me they put the rituxin in one day and the next day was the actual chemo (R-CVP). They may do this for you as well. They also give you an injection of benedryl to prevent any reaction. That will make you tired the rest of the day. Rituxin is not chemo,but a maintenance drug. After my first treatment of Rituxin I could actually feel where the tumors had shrunk in my abdomen later that night while laying on my back on the bed. I mentioned this to the onc. nurse the next day when I went for my actual chemo. She said that it was normal because the tumors were melting quickly. My stomach ached off and on for about 2 weeks because of the shrinkage. What had been there for probably years was melting within a day. It is a shock to the body to say the least. With the tumors melting so fast the organs were shifting around to areas that were previously occupied by tumors. Just had my mid way pet scan and they were down by 2/3's. Some were actually gone. Hang in there and take it one day at a time. Its easy to say but its all we can do and we will be here to walk you through it. John

truckingalong
Posts: 444
Joined: Aug 2010

Bless you - your experience is helpful for me and prepares me for whatnot. Those treatments are amazing. Will keep you posted when I start the treatment.

Thanks,
Liz

Joyinthemorning
Posts: 1
Joined: Apr 2015

Hi my dad is starting treatments on Monday.  What side effects have you experienced thus far?

cookingirl's picture
cookingirl
Posts: 183
Joined: May 2010

Hi - 67 year old female from FL. Diagnosed with the exact symptoms last Sept. and on advice of Moffitt Cancer Center in Tampa and compassionate, exceptional Cancer group of 9 Oncologists on the East coast where I live, we went with "watchful waiting" for 9 months til late May. Had I started treatment with my tumors deep in my abdominal area beneath the small intestine, my good cells which were trying to fight it would have been destroyed. I had NO symtoms and my 3 cm tumor was found accidently on a CT scan for something else. MAKE sure with bone marrow biopsies you have Vercet given - you have no memory or pain - wouldn't think of doing without that but didn't like hearing I was stage 4. In late May, suddenly with no warning, found on CT's we did every 3 months, it had grown like a vengance to 12 cm so started Chemo right away R-CVP. First chemo was bad but just had 3rd this week and gets easier each time - heard it's usually the opposite. Half way check with CT tomorrow to see if the drugs are shrinking tumors - a bit nervous about that. Must be a much milder Chemo than CHOP which I'll do after Remission when it returns. Will be on Rituxon for 2 years to prolong - IV in port every 3 months. Very expensive Immunotherapy - $6,000 a bag. Insurance is paying it all - thankful to have Aetna but worried about new health plan in Jan. and how it will affect it. No surgery or radiation for me - can't be removed as deep as it is. Good luck, keep up positive thoughts and if you're a Christain, have hundreds praying for you!

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

Thank you soooo much for this information. I will definetely run Vercet by my doctor and ask her if I am a candidate for this. If she says NO...she better have a darn good reason, because I WON"T have a BMB done again without sedation!!! I REALLY like the idea of "No memory and NO pain"...oh yea...I'm down for that!!!!
Sue

nbergeson
Posts: 2
Joined: Sep 2010

I can see that I came to the right place for support! I am alone and have too much time alone to worry. I was diagnosed in February 2010, after they "fooled around" with biopsies that didn't tell them enough. The tumor is behind my heart, so they can't do surgery. I had three chemo treatments (R-Chop). It affected me but nothing like alot of people go thru. I responded very well. I then had 24 radiation treatments. I finished those in June and haven't been back to the onc since. I have an appt for a cat-scan and to see the onc the end of this month. My question is in regard to itching. When I was diagnosed, the onc asked me if I had itching, which I didn't have then. The last 6 weeks have been horrible with itching. Has anyone else had itching and if so, what helped? I have tried all of the over the counter things and a prescription for the itching. In reading thru this discussion, I have learned more than the onc has ever told me. He asks if I have any questions, but I never know what to ask. It will be great to have this support! I don't know about any of you, but when I am asked how I am doing, if I tell the truth, people don't really want to know. They just want to hear that I am doing well. I really don't have anone to listen to my fears or really want to know how I am doing, so I just say I am doing well. I didn't know until now that depression goes with it. I will be praying for all of you.

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

I am sorry you're having a rough time, but I know what you mean about people asking but not really wanting to know. You know, I finally just said one day I feel like crap, but I'll be ok and walked away. People started finding out that if they asked, I would tell them honestly then laugh about the look on their faces.

Come here, talk, vent, cry whatever you need. We'll be here. You are NOT alone in this journey. We do understand and will do what we can to help. I haven't had the itching, but it IS a symptom of Hodgkins, but I don't know about NHL. I never had it, but itch from horrible bug bites that have been so much worse since cancer came to visit.

Take care and I hope we can help.
Beth

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

Hi..Please don't feel like you are alone. With this group you will have a whole bunch of friends to talk with, and we "DO" care how you are feeling. I've only had one round of chemo/R-CVP and so far have not experienced any kind of itching. Maybe someone else in the group will be able to help you out with some info. I have not encountered anyone yet that really didn't want to know how I'm doing, but this cancer thing is all pretty new right now, so maybe in time they might feel that way...sure hope not! When you need someone to talk with, just jump in here and there is usually someone around to give you support. I'm a night owl, so if you have bad nights I'm always hanging out close by. Take care and don't worry alone...let us help.
Love...Sue

COOK1313
Posts: 28
Joined: May 2010

You all give such wonderful advice! I'm scheduled for an MRI on Monday. My GP asked me this week if I have any family history of NHL. I have an uncle who had NHL but has since passed. I started having low back pain in January along with Urinary urgency, changes in bowels, I can't eat more than a few bites at a time before I get nauseous, and I itch like a junkie. My GP referred me back in May to my Gynecologist and they found a complex cyst on one of my ovaries so she did laparoscopic surgery in June to remove endometriosis. Said that this would alleviate my symptoms. My symptoms have only gotten worse. I now itch so bad that I have broken skin at times. The pain in my lower back is so severe that I can't sleep in my bed. It seems like it hurts so much worse when I lay down. I have what looks like acne but they're just liquid filled bumps all over my skin. I have night sweats which is odd because I'm normally one who is always cold. My GP said that something isn't right and doesn't want to keep sending me from one specialist to another. I was in the ER on Sunday because the pain in my back radiates around and into my hips. He had told me last week that the lymph nodes in my groin haven't gone down since I was in his office in May. I feel very lucky that my GP is one to actually listen. I noticed during my first visit with him over three years ago that his undergraduate degrees are in Psychology and Biology. Maybe the psychology part helps him to actually listen to his patients. I'm praying that it's not cancer but need to know why at 32 I am in so much pain. Up until 9 months ago, I only saw him for my annual physical. He's ruled out Lupus and the xray on my lower back was normal. I'm not even sure what symptoms are normal for NHL and I do NOT want to scour the internet. This site is one my aunt uses as a breast cancer survivor so I decided to listen to those with first hand knowledge. I'm an eternal optimist so I know whatever road lies ahead, the good Lord's guidance will take me through it. Any advice is welcomed!

kelly02
Posts: 8
Joined: May 2010

Hi my name is Kelly, and this will sound crazy but my sister is the fitness director at Hickam. Her name is Bonnie Jo Bentley. look her up. i was diagnosed with fullicular cancer in march of this year. Right now I am doing that watch and wait method however the cocktal (i like to call it) that you mentioned Rituxin and Bendimustine is one of three choice that i was just given. I just completed my second Pet scan and am sure that i will soon be starting treatment. My husband Jerry and I are learning as we go. I also have two boys however mine are old one is a Marine and one is a senior this year. I do alot of praying and alot of reading. I have a team of doctors at Hershey Medical Center part of Penn State University. They tell me it is VERY treatable but there is no cure. I had my bone marrow test they gave me 6 shots to num me, make sure they num her really good, if you dont ask they wont give it. the test came back that its also in my bone marrow. I will tell you to not believe everything you read on the net. I stay on this site only. there are alot of people you can talk with. I will chat with you if you would like and we can learn together and my sister I just spoke with her and she said to stop by and talk you two can go through this together as well. She is coming to see me this week and will be back aug 3. I will also tell you with me I have good and bad days there are times I yell at Jerr and cry alot. ask why me what did i do etc.. the best thin is he listens and gets me through it. Thats that best part just listening, God bless you and your family and pleaes stop and see my sister

much love Kelly

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

Kelly, What other options did they offer you? I am stage 4 nhl myself and getting ready to go thru round 3 of r-cvp. So far,so good,I guess. I agree with you about the net articles. When I was first diagnosed I spent hours and hours on the web searching for answers. One said one thing and the other said another. My mind was a mess. Then I found this site and things started to smooth out. take care, John

friendm7
Posts: 6
Joined: Jul 2010

Kelly,

Wow, guess it's a small world. I'll definitely look up your sister. Need as many in my support network as I can possibly get.

Trina did round one of chemo on Mon and Tue this week. Still no side effects. I took the week off work to help her get through her first session and we are both surprised that she is still feeling good.

Man up above must be looking down on us.

Wishing you the best on this long roller coaster ride we are both on. With your permission, we can get through this together and learn from each other.

Mark

kelly02
Posts: 8
Joined: May 2010

Yes please look her up. I told her about you and your family. We will get through this together. and there are many people on here that will help as well.

take cae God Bless please tell your wife she is in my prayers

much love Kelly

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

Hi Mark,
Thats good news that Trina is still feeling good after her first treatment. Makes me hopeful that I might have the same good fortune after my first round. Thanks so much for sharing!
Sue

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

You are going to do FINE Sue....you have a great attitude and that's what it takes.........that and LOTS of naps LOL.

Have a WONDERFUL WEEKEND sweetie!

Beth

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

Hi Beth...Weekend has been great so far. Watched some good chick flicks...A Walk in the Clouds...Moonlight and Valentino...Thornbirda...and ate Pizza and ice cream. Today I'm relaxin just reading my book and then my hubby will be home this afternoon..."YES". Monday will be here before I know it!
Sue

lindary's picture
lindary
Posts: 650
Joined: Mar 2015

So how is your wife doing? Hopefully still avoiding most side effects.

I got through the R-Chop fairly easy. Now doing RICE in prep for SCT since, in my case, the R-CHOP did not get all of the cancer. No side effects from RICE except for hari lose, not that it had grown back much. I am hoping that when I do the SCT the side effects are still minimal.

GalacDad's picture
GalacDad
Posts: 40
Joined: Aug 2010

Mark,
Fully understand what is going on. I to am in the AirForce, I had been diagnoised with Hodgkins after going in for a physical after a TDY. Running the gambit of emotions is normal (and draining). Talk about EVERYTHING with your wife. I have 2 girls also, they were the same age as yours when I was told I had the "BIG C". It took a couple of days for me to gather my toughts, but just ended up sitting down with them a explaining everything I could in their terms. It worked great and they were a tremendous help in the whole recovery process.
Hope that your sqaudron really pushes the humanitarian. Tripler is a great regional, but Dayton could possibly be better. Plus being with family is also a relief. I was treated at Andrews and Bethesda Naval. Both these facilities were outstanding. Services now are only at Bethesda, Andrews closed their Onc lab 2009.
No b.s., these are some of the toughest times one can go through. Strong family, good friends, local support groups are all beneficial. Be there for your wife, she will have good days and bad, some of the bad are really bad.(not to scare you. If she can get into some of her normal routine during this battle, that helps also, anything to keep involved helps in the process of recovery. Is your squadron giving yuou the time you need or are you using all your leave up? Just a concern. Get with the support groups, they even have some for spouses of people going through treatment. Chaplins can be good, but it was better for me to talk with others that had history of this. Keep in touch.

DAVE

hilde451's picture
hilde451
Posts: 229
Joined: Oct 2009

I can understand your shock. But it is treatable. I was diagnosed in 04. Had surgery and 20 radiation treatments. Was home free for almost 5 years. Then it came back
with a vengance, also in my bone marrow. I did 8 chemo treatments and a radioactive treatment.
I am stage 4. I will be praying for her. I believe that she will be ok.
Hilde

sm43
Posts: 1
Joined: Sep 2010

Mark,
I was diagnosed in Oct. of last year - stage 4 large diffuse B-cell lymphoma arising from a follicular origin. My treatment was R-CHOP (6 rounds, once every 21 days). My husband was distraught over my diagnosis, but our children (though frightened) managed fairly well. I tend toward a positive outlook and that helped my family significantly. I spent a great deal of time mentally visualizing a positive outcome. Attitude plays a large role. I did not find chemo to be that bad and frankly I had been expecting worse. Hair loss was a bit traumatic since I had always worn my hair long. Bottom line I'm in complete remission and undergoing maintenance Rituxan therapy (once every 8 weeks for about the next two years). I am an academic and spent a lot of time researching the literature on NHL. The news coming from the research community is very encouraging. I live in Texas and have been treated at MD Anderson. I would recommend any good research center in your area. This is survivable and I wish you and your family the very best.
Sherri

mycancerwarrior's picture
mycancerwarrior
Posts: 1
Joined: May 2015

Hi Mark..

I have had the same exact form of cancer since 1999 and 7 rounds of chemo treatment so I guess you could say I'm a cancer veteren.

When I was first diagnosed with cancer there were a whole host of chemo treatments and most of them were harmful to other organs in the body, since then researchers have come up with very spcific treatments for what your wife has and they are very effective at beating this enemy back. The chemo treatment your wife is going to recieve is very good and I have had it too, it has some flu like reactions on the first treatment but after that is a piece of cake with very few side effects. Although there is no cure YET, I am hopeful that within five years there will be a cure for this exact form of cancer.

jpsterling
Posts: 4
Joined: Mar 2018

I'm so sorry to hear this.  I was recently diagnosed (I'm older than your dear wife at 61) and my husband seemed to facillate between denial and panic.  It's a hard pill to swallow especially when one looks healthy on the outside. I would encourage you to talk to your wife honestly about how you feel.  The diagnosis is yours too.  Also, as a Christian, I've found reading the promises of God and talk to Christian friends helps tremendously. 

For me, being diagnosed with FL was life changing.  It made me look at my own mortality and evaluate what is important and what is not.

From what I'm being told by my care team, FL is very treatable even in stage 3 and 4 (I'm stage 3).  I'm about start rixtuan and bendamustine and my prayer is that it will put me in remission for a very long time.  I will be praying for you and for wife and your precious children.

 

Subscribe to Comments for "Still in Shock--Wife Just Diagnosed w/ Non-Hodgkins B-Cell Follicular Lymphoma Stage IV"