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Newbie spouse here, and scared

kychevyguy
Posts: 6
Joined: Feb 2015

Hi all, my spouse has just been diagnosed with Lymphoma this past Friday. We have a close friend in the lab, so that much we know. We have yet to meet with the Oncologist so we don't even know if it is Hodgkin or Non-Hodgkin type. I think I remember our lab buddy stating stage 2 something...it was all a blurr of information and we were not thinking yet.

Now, we expect anyday to be called back in to talk to the Oncologist and I want to make sure I ask the right questions. Please advise on this!

My thoughts? We are a team, and will get through this rough patch together just like every other up and down for the past 21 years. I am thinking we find out through testing the extents, the severity, and exact type so that we can form a game plan of attack.  Things are about to real, and I will admit that I am a little scared, but here we go.

 

JT

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3518
Joined: May 2012

Welcome, K, but I'm sure you would rather be getting a welcome to a new county club or island time-share than this Discussion Board.

You do not yet provide a lot of info. Your spouse's age and general health history will be important, for instance.

A BIOPSY, by itself, cannot stage lymphoma, but will tell you what type of lymphoma it is. There are five major strains of Hodgkins Lymphoma (HL), and twenty-five (25) common strains of Non-Hodgkins Lymphoma (NHL), and they vary a lot in aggressiveness and prognosis.  But almost all are very treatable. Only a CT or PET (sometimes they are combined into one scan-experience) will be able to "Stage" your spouse.  Staging Lymphoma and Leukemia is very different from staging most organ cancers, and your oncologist will explain how staging works.

When meeting the oncologist, do go together. Your "team" approach is ideal and very helpful. Take a writing tablet, and get paper copies of all of his results.  Bioppsy, lab results -- always get a paper copy from the doctor at each meeting. You have already paid for these results anyway.

Write down the exact STRAIN of his disease (although this will be on his biopsy report). Write down the proposed treatment, which usually will be an assortment of letters, like "CHOP" or ""EPOCH".  Each letter stands for a different chemo drug. 

Good luck. Regardlsee of what strain of lymphoma he has, there will very likely be several people here who have had the same disease and treatments that he will receive.  Most lymphomas, even late Stage 4, is nearly always beatable !

max

jimwins's picture
jimwins
Posts: 2111
Joined: Aug 2011

Sorry you have to be here but you will find caring and supportive folks here.  I agree with everything Max has stated.  It's a little difficult to plan right now until you know more (type of cancer, stage, treatment plan, etc.).  This is scary - especially in the beginning but as you learn more and get started with treatment, it will get easier.  As Max said, lymphoma is very treatable and certain types are considered curable.  There are many success stories here and lots of hope!

Please keep us posted and feel free to come here to ask questions, vent, and get support. 

Big hugs,

Jim

kychevyguy
Posts: 6
Joined: Feb 2015

Thanks guys.  Right now, I am in full blown self-educate mode (with a tiny sprinkle of denial.)

jimwins's picture
jimwins
Posts: 2111
Joined: Aug 2011

That is perfectly normal, JT.  Just be careful about what you research on the Internet and take some things with a grain of salt.  There's a lot of junk out there with the good stuff.

Attitude and humor are free weapons in ths war - use them :).

Hugs and positive thoughts,

Jim

 

 

kychevyguy
Posts: 6
Joined: Feb 2015

We finally are getting called in to talk to the doc tomorrow morning. We had decided to not say anything to anyone at least until after we find out exactly what we are facing.

In my humble opinion, I believe that the stage between "you have cancer" and the explanation of the actual diagnosis, may be the worst part.  Your mind plays tricks, your imagination runs wild, your emotions are all over the board, and you can forget about anything resembling a restful sleep.  You can try to focus and go about your daily life and work, but your mind still goes back to those thoughts.  Tomorrow will be nine days since those fateful three words. I hate those three words.  Even though "we" have this illness, I also know he has more of it to deal with.  I'm not in his head.  Even though after 21 years I know him pretty well, I still can't read his mind.  So I guess we wait another day, push through more meetings and conference calls, and place one foot in front of the other...

 

BTW Max, he is 47, non-smoker, and somewhat of a gym rat in pretty good health.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3518
Joined: May 2012

 

It was two months between when I got diagnosed and when my first infusion began, so even after your visit tomorrow, very likely, there will still be waits.

Fear and dread does not really diminish, in many cases.  There are many regulars here who, years after rermission, are scared to death at every follow-up scan. 

A good friend from church, about 45, just learned, out of nowhere, that she has late Stage 4 breast cancer. She will do four months of chemo (called "neoadjuvant therapy", the purpose of which is to shrink the tumors enough to cut them out), then massively radical surgery, then a full course of radiation, and then go back on chemo, most likely for five years. That is if she is lucky, and the initial chemo goes well.  

You have obviously learned a lot in nine days. You will know a lot more in nine years, and then more still in nineteen.

I pray that your news be all good on March 4.

kychevyguy
Posts: 6
Joined: Feb 2015

Non-Hodgkins Grade 2 Folicular Lymphoma.  That is what the doctor said. He said after we do the Pet Scan, we would then know on if we are even going to treat it.  ?!?

He told us to look at it like it was diabetes in the fact that many people can live with this for many years. The scan should tell us if there is more lymph nodes that need to come out, and whether or not we will need to do radiation. He also said that this type tends to come back, but that it could be two months or twenty years.  He said there was no current cure, per say, and we would have to just keep an eye on it for now.

We have scheduled a Pet Scan and a Bone Marrow Biopsy.

 

I am considering this all very good news...right?

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3518
Joined: May 2012

Ky,

Several regulars here have the same strain of lymphoma, and I am sure they will chime in.  I am not very familiar with it myself, except that it sounds like patients go on what is called "Maintenance," which means chemo to keep the disease in check, often for a very long time.  It is probable, from what the doctor told you, that they in fact go in to full remission for extended periods. I believe this strain is what our wonderful Mrs. Sue has; my apology if I am wrong.  Lymphoma like this is what is called "indolent," or slow-moving -- lazy cancer

I myself would indeed call it good news: it is treatable and controllable, and new drugs are coming out ever year, so it may in fact be curable soon.  

Bless your progress with all of this, stressful as it is,

max

 

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kychevyguy
Posts: 6
Joined: Feb 2015

Finally met with the Doctor this past Friday morning.

Good news: Bone Marrow can back clean.

Bad News: Pet Scan lit up like a Christmas tree.  Cancer is pretty much everywhere, much more than expected. Doc did again say that this kind is very indolent. He said the more indolent (gentle) it is, the less chances of it having any kind of cure. He also stated that most people with Non-Hogdekins Follicular Lymphoma (sp) usually die with the it, not from it.  That being said, as much as the pet scan showed, they are starting chemo treatments this Friday. He said they are going to hit it pretty aggressively with "R-C.H.O.P." The letter R was the anti-body, and the rest were the drugs. The treatments will be 4-6 cycles every three weeks.  I asked about long term prognosis, and the Doc just kinda smiled and shrugged his shoulders saying "wait and see."  Really??

We will keep an eye on the blood count to monitor things and will do another pet scan after the fourth treatment. The food restrictions were a big surprise to both of us. Especially raw veggies and salads.

Our emotions were all over the place. One minute, breathing relaxed and the next it was sheer panic of terror.

Rocquie's picture
Rocquie
Posts: 839
Joined: Mar 2013

Your spouse's diagnosis and care plan sound much like mine. I also had cancer "everywhere" except none in the bone marrow. My oncologist also hit mine hard with R-CHOP. I had 8 cycles of it. I have been in remission for a little over two years. I also had 2 years of Rituxan maintenance infusions, which is the "R" in R-CHOP. 

The R-CHOP is big tough medicine for a big tough disease. Some people have less side-effects than others. There are always ways to manage the side-effects. It will be very important to report symptoms to your doctor. Blood counts will drop and that is why they will be carefully monitored. Nuelasta shots may become necessary--they stimulate the bone marrow to produce more white blood cells--the ones that fight infection. 

I love your "we" attitude with this. My husband was always the same way. He never called it "my" lymphoma, he called it "our" lymphoma. He has always referred to the oncologist as "our" doctor. It has helped me in ways I never knew were possible and has brought us much closer as a couple. Thank you for being a devoted caregiver.

I was also surprised by my ban of raw fruits and vegetables. The reason is because they could contain bacteria that wouldn't be harmful to a person with an intact immune system but could cause major problems when compromised. Equally important are diligent hand washing, avoiding public places, showering daily and wearing clean clothes. 

I remember the feeling well of the "emotions all over the place".  There are many people here who have been where you are. Please remember that this disease is very treatable.

Will you keep us posted?

(((Hugs)) to you both,

Rocquie

 

lindary's picture
lindary
Posts: 695
Joined: Mar 2015

JT

I was diagnosed with Follicular lymphoma, stage 4 in December. Not sure the grading. The first clue was a fairly large tumor in my abdomen, estimate 20 cm. Bone biopsy came back positive. PET scan showed 3 or 4 hot spots. Even though all indications said indolent the size of the tumor is whant convinced my oncologist and the consulting oncologist to treat it as aggressive. The plan is a chemo session every 3 weeks for 6 sessions. I started CHOP chemo on 1/3. Insurance had not yet approve the Rituxan. Five days before my second chemo I had severe constipation. Ended up going to the ER where we found out I had a perforated bowel. It was caused by the tumor having been against the bowel long enough to have created some adhesions. When it shrunk it pulled a few pieces of the bowel. So 1 week in the hospital and several more weeks at home with in home nurse and twice a week PT. Second chemo was pushed off until 2/24 when I got the Rchop for the first time. They gave me Benedryl (IV) and Tylenol (tablets) before the Rituxan. I still managed to have an allergic reaction. I have now complete 4 chemo sessions with #5 next week. No more reactions to the Rituxan and they still give me Benedryl and Tylenol before the Rituxan.

I am a programmer/analyst and one of the best pieces of advice I got was from a cancer survivor in our area when I was first told of the diagnosis - treat it like a project. So the first part is the analysis (test) followed by design (treament plan). Next would be code & test (getting insurance approvals, schedule chemo,etc.) and then the Implementation which is Chemo Starts. The surgery was one of those "gotchas" that happens in a project. I guess tying this whole cancer treatment process to something I am very familiar with, project development, has helped me to move through all of it.   

The hardest part is the week after the chemo. With Rchop I was also prescribed to take 100 mg of Prednisone for 5 days, starting the day of the chemo. First, it tastes terrible so you really want swollow it as quick as you can. Also take it after a full breakfast. Seemed to reduce the feeling of being light-headed. I felt somewhat euphoric and didn't feel safe to drive. Then day 6 no Prednisone (cold turkey). Day 7 I felt like a wet dishrag and wanted to sleep, or at least nap multiple times during the day. This has varied with each session with the last one having me just taking 1 nap. On Day 8 sometimes I am still feeling a little tired or just moving a little slower. I am fortunate in that I can work from home or be in the office. Day 9 usually finds me back in the office until the next chemo session. 

Except for the surgery I feel things have gone fairly well. The oncologist has said that once this is in remission life is like someone who has diabetes (except we don't have to test our blood after every meal). Can't wait to get to that stage.

 

kychevyguy
Posts: 6
Joined: Feb 2015

Thanks everyone for the kind words of wisdom here. This is all a learning experience for both of us. I keep looking at it as another hurdle to cross. Watching cancer destroy and eventually take his father a couple of years ago, I know weighs on his mind. He talks quite a bit about final wishes, wills, bucket list items... Things that are not normally discussed at 47. I know that it is normal for a couple (esp. after 21 years) to have plans for final arrangements and a general idea of will items. But this is a common topic of discussion now. I see this as being very treatable and manageable. How do I get him to see that too? He has started telling people (family and very close friends) about this, but he only talks about the "negative" stuff. He never mentions how our doctor talks about it being very treatable, very respondent to meds, that "people die with this, not from this." While he is telling people, he tells them he has cancer, the pet scan "lit up like a Christmas tree,"and that there is no cure. I find myself doing a lot of damage control, explaining to these obviously frightened people that this is something people can live with for a very long time. There are negative and positive aspects to this particular disease. Because he is only focusing on the negative side, I find myself trying to over-compensate the other direction. I just don't think that things are as bleak.

I hate cancer, and what it does to people. I watched it destroy my brothers family when it took my 7 year old nephew. I really hate this disease.

lindary's picture
lindary
Posts: 695
Joined: Mar 2015

 I have a feeling I know what you are dealing with. My husband comes from a large family with 7 boys and 2 girls. The boys tend to be negative like your husband. Two of their brothers have died from cancer. One from throat cancer (heave drinker and smoker) and the other from lung cancer (heave smoker). This second brother stayed with us at the end until he died. A third brother had lymphoma just in the nodes in one arm. Treated and survived. Yet when we told them I had cancer the only ones who had a positive attitude about my situation was the one that is a survivor and another brother whose wife is a survivor. Yes, that means my husband was not very positive even though he came with me to the dr appointments and many of the tests. When we would get home and talk about what was said, there were times I wondered if we were really in the same room. He would hear the negative and almost none of the positive. I had to repeat the positive things over and over again to get him to focus on that. Also once I started chemo I found him treating me like the brother that stayed with us. As a person whose strength and health was going downward. I guess the good part of that is I made sure I was doing as much as I could for myself but still let him do somethings for me I took a while but I finally got him away from the negative stuff. It also got me to set as a goal getting back into work on a regular schedule, around the chemo/prednisone schedule. I see my husband now having a more positive behavior. My kids have handled it fine as has my brother and his family. (BTW - we have been married 40 years.) All I can say to you is keep on with the positive talk. Especialy in front of your husband and even directly to him. I think once he gets into the chemo routine I hope your positive attitude starts to rub off on him. 

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