Nervous

Finished up 8 cycles of chemo in early April, and a month of Radiation in May. Because of insurance issues I finally had my end of treatment PET scan this past Friday (the three months of sitting around waiting has really been a test of patience!!)and now tomorrow I meet with the oncologist to discuss the results. I feel great, but I'm still a nervous wreck about possibly getting bad news tomorrow - after all, I didn't feel bad in the first place when I first found out I had Hodgkins last November.

I'll keep you all posted - hopefully it's good news!!

Pete

Hi just wondering how you are doing? You said you were not sick when you were diagnosed... How did they find it? How big were your nodes? Did anything show in your blood? Are yOu in remission? I had a CT scan for a hernia and the found some enlarged Lymph nodes. I have no symptoms, no palpable nodes and my blood counts are all normal. I am now waiting on a biopsy. But I don't know what else could cause this other than lymphoma. Any info you have would be greatly appreciated. Thanks.

Hi NewDad,

I was diagnosed last November - I had a lump in my neck that wouldn't go away and was getting bigger each week that went by. I did see my general practioner and he kept insisting it was nothing because the Xray he ordered came back clean, same for the blood test. Thankfully I didn't listen to him and I followed up with an ENT. He's the one that ordered the CAT scans and biopsies. I don't remember exactly what size the largest lump was, but it was large enough that you could easily see the bump. I was a little on the tired side, but that was about it - no other symptoms. Thankfully we caught it early and I was only stage II (lumps in my neck and chest).

I finished up my chemo treatments in April and my radiation treatments the end of May and my follow up PET scan came back clean (it was actually clean half way thru my chemo treatments but you have to finish out the treatment plan to make sure you blast every last cancer cell). I go back in March for another PET scan - getting nervous as it gets closer and closer and have my finges crossed for continued good news.

Physically I feel great - better than I have in years. I feel at least 10 years younger than I did before I was diagnosed and my energy level is great. I'm back to working out every day and guys half my age in the gym (I'm 41) can't keep up with me.

I know the waiting and uncertainty is hard, but try not to worry until you know you definitely have something to worry about. Please keep us posted - this is a great forum with a lot of great people. You'll make plenty of new friends and get plenty of support here.

Pete

Hi Thanks for the info. I am 42, and expecting my first child in April..Thats what makes all of this even worse. I know they say that if you have nodes above and below the diaphragm that puts you in stage III. But how stict is that rule. I have a couple in my abdomen, and 2 practically on my diaphragm..just about an inch about. I donnt know if that would still make me stage III or II. I guess it depends on if that rule is "strict" or a guide line. I, the same as you have never felt so good Before! I just thank God for the hernia I have, which is the only reason this was caught. I guess God is giving me a chance to be with my little girl...Or at least I hope so. Like I said I am still waiting, BUT, there is not much else it could be. I have no infection, so they say. But I did have a major opereration a few years back on my bowel for diverliculitis. But the doctors know that and dont seem to pay any attention, so I guess its irrevelant. One Thing, I guess Ill be going throught treatments when my baby is born, IF this is indeed Lymphoma. I just want to get the treatments started. Where you sick at all while recieving treatments? I am in Canada By the way, But im sure there is not much differance in the type of treatment given for this beaast.. Best of luck to you..Take care.

MY hodgeskin was in the inside of my body it was attached to my asphogis I think thats how it is spelled so I never felt a bump only had fevers and night sweats and being a women we sweat anyways at night. But when the dr told my husband and I that it was cancer I thought they were nuts. I was 34 at the time and very healhty. But the doctor came right out and showed the mass in my chest was the size of a softball well when I saw I actually applogized to the dr for calling him nuts. From that day on my life changed today Iam 16 yrs in remission and iam planning on staying that way. If I didnt do what the dr told me I would have died in 6 months and would of missed out on alot. today my boys are grown my oldest being 36 and my yougest being 31 with his own children. Thru out it all i was worried about my family and not me. Today I think back and say thank you I would of missed out on alot and I really found faith with in myself that yr.
Stay Strong my soldiers
Kim/Chaplin CT

Regardless of it's stage, Hodgkins is very treatable so don't worry about that too much. You don't have any symptoms so that is also in your favor. Still, the lumps could turn out to be nothing - I'll keep my fingers crossed for good news. You said you were waiting on a biopsy - have you already had the biopsy and are waiting on the results, or are you waiting to hear when the actual biopsy is scheduled for? My only advice would be to try to go to a major cancer treatment center in your area. I bypassed my local hospital and traveled and an hour and a half to a leading university hospital.

If the biopsy does come back and show it's Hodgkins, you'll have to go thru a few more tests. First, they will probably remove one of the lymph nodes completely so they can determine what type of Hodgkins you have (the biopsy will only tell them that you have Hodgkins, not what kind you have. There are different types and your treatment plan will vary depending on what kind you have). You'll also have to have a bone marrow biopsy to make sure the cancer isn't in your bone marrow (chances are very slim that it would be, but it's just a standard test). The test wasn't nearly as bad as I had been expecting and I didn't really feel any pain, just a bit of uncomfortable pressure (Even after the test was done I would compare the soreness to a flu shot). I would also recommend having a port put in. It's a little uncomfortable having this plastic bump under your skin, but you get use to it, and it sure beats having to use an IV for your chemo.

I had 4 cycles of ABVD (two treatments two weeks apart = 1 cycle). EVERYONE reacts differently to these drugs, so don't put too much stock into the stories you hear - but I won't lie to you, after the third treatment I was sick as a dog. For some reason I could taste the chemo (even now just thinking about it I'm getting queasy), while others in the treatment room couldn't and just looked at me like I was crazy. I was sick from the moment the chemo started, the rest of that day, and sometimes half of the next day. I got to the point where I was so sick that they actually gave me my own room instead of having me in the general treatment room grossing everyone else out. Wednesday was my chemo day, by Thursday evening I could at least get out of bed or away from the bathroom, and by Friday I still felt bad but I could do just about anything I needed to.

While going thru my chemo treatments, I continued to work as close to full time as I could(I had enough accumulated sick leave where I could take off Wednesdays and Thursdays of treatment week. I work a compressed work schedule where I work longer days and then get every other Friday off so we timed my treatments to match my Friday's off), take care of my 3 kids (13, 10, and 6), and I continued to coach my son's two baseball teams and never missed a practice or game for either team. There will be days where you are tired and just wanting to rest, but I tried really hard not to be limited to what I could do. It's just my opinion, but being in shape before this mess started, and trying to stay as active as I possibly could thru out the treatments really, REALLY helped me get thru things a lot easier.

Within 72 hours of chemo I had to go back to the hospital to receive a Neulasta shot which boosts your white blood counts. Some folks complain of severe pain from this shot, but I had nothing more than slightly sore knees, achy hips, and an achy lower back - it just felt like I had worked out too hard. The shots worked, even with three kids and taking a bus to work everyday I never got a single sniffle and I didn't have to have any treatments delayed due to having low counts.

If you have any further questions please feel free to email me at [email protected]

Keep us posted!!

Good 2 read your comment. Gives me hope 4 my son.

thanks again for the info. IF it is lymphoma I am hoping it is Hodgkins, even though its prob unlikley since Non Hodgkins is more likely. I am still waiting for an appt for biopsy because they did Blood work on Monday, got the results back Tuesday, and waiting on a call for the biopsy. When you say it could be nothing, do you have an suggestions as to what else could cause this type of thing. Do you know if nodes stay enlarged from a past infection? You sound strong, I am too, I am in shape and strong, so if anyone can beat this, I know I can. I have also heard that IF you are going to get cancer, Lymphoma is the one to get. I at least know that none of my organs are involved..Ive been scanned from head to toe and had a colonoscopy done....Again, I appreciate all info..Best wishes

What kind of scans have you had? A CT scan will show the docs the size of any lumps, but won't tell them if it's cancerous or not. A PET scan is really the only scan that can tell them that....

Ive had two CT Scans which told them my lymphnodes are ranging from 1.6-2.5cm...I have 4 of them

Even if it does eventually turn out to be Lymphoma (but hopefully it won't) with only 4 lumps you've caught it very early. I had about six lumps on each side of my neck (with only 1 really large enough to feel) and about a dozen in my chest - and I was still only Stage II. Doc said it's very slow growing and that I could have had it a year to a year and half before finding out about it....

Thank you that makes me feel so much better. I was thinking it was early stages too because of the fact that they are not yet "massive" and also because there is only 4 that they are concerned about. But the more I read I learned that if you have them on both sides of the diaphragm that puts you in stage III..So then that made me a little nervous:S...I just want to find out, and get this moving..I am still praying that there is something else causeing this. But when the CT scan says "suspicious Lymphoma" it makes it hard to think of anything else...

It's a rush to do this or that, wait for the results, more tests, more waiting. At times it seems like all you do is sit around waiting - all the time nervous as hell and assuming the worst.

Easier said than done, but try not to dwell on it until you at least you know you have something to definitely worry about.....

Vicki,

I wish your son the best. I thank God every day it was me and not one of my kids that had to go thru that. I can't imagine being a parent, watching your child go thru treatments, and the feeling of helplessness you must have.....

Pete

Im trying ... you're right, easier said than done. I just have my mind set on IF it is Lymphoma, its early, and treatable, if not curable...Thats worst case senerio.

its kind of like the hurry up and wait game, the waiting is the worst.

I totally agree....it sucks!

You will see the light at the end of the tunnel. Stand Strong my warrior

I hope so. Thank You.

Has anyone heard of the nodes shrinking a little and still being cancerous? I still dont have a diagnosis. But since I wrote here last I got the results of my coloscopy, which showed some "unspecified inflammation". I have had a bowel resection in the past for diverticulitis. The surgeon says it COULD cause the enlarged nodes. I went for a biopsy yesterday..the 2 of my does that were 2.5 are how 2.3..just wondering if anyone had them shrink?

Thanks