Newbie spouse here, and scared

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

Rocquie said:

JT

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

 

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 said:

Trying to comfort

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.

 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.