acshipway

Hey Andy!

I am completing 2 years of maintenance Rituxan treatment. I think I have 2 more to go and then I will be back on "watchful waiting" until I either develop symptoms or when I feel more lumps and bumps.

Currently I cannot palpate any of the lymph nodes that I was able to see and feel. So I guess I will be back to sizing them as peanut, almond, walnut......

I hope you are doing well. Here's to a healthier 2015!!

Hey Andy,
Hope this finds you and yours well there. Figured I'd give you the results from Dec 18th scan/appt. The found a node under left armpit and I have one under my chin on rt side so Doc said the radiation made the original ones in my rt groin a lot smaller but I am not in remission come have bloodwork in March next scan in June. I was not happy of course but my thought is this...I thought indolent b cell follicular was slow growing so doesn't seem so slow to me if it's poppin up on other side of my body after only 6 months which now has my mind wandering and wondering,lol.Other then that all is ok,I went back to work at the barbershop for 2 days a week but might have to bail because people come in sick with the flu and stuff and I just can't take the chance...actually sick with something as I write this,lol but I ave yet to make up my mind as it's a great diversion and gives me a little spending moolah so I don't know.So that's my story for now. Hope you and your family have the best New Year ever! Georgia

Andy, Darrell just got a totally clean scan, a diagnosis of complete remission and has been excused from his 6th round of chemo due to cost and physical effects plus the onc said we shouldn't have to pay $1700 co-pay just for "padding." Just wanted you to know. He had what the Doc calls a "complete response." :-)

Andy...question. Darrell had a rougher than usual crash after his last chemo. It's almost a week out and he is still having periods of fatigue. A little outing will absolutely wear him out. There is a big holiday get-together at his sister's house on Sunday and there will be about 20 people there. He and I are a bit "iffy" about him being around that many people, and there will be a lot of kids. Have you had a problem with chemo fatigue lasting this long and what would you choose to do if you were him about Sunday? I ask you because you are more familiar with his chemo drugs and type of cancer.

How's it going, Andy? We've had a monkey wrench thrown in with Hubby's diabetes diagnosis but we are still hanging in. He had a CT scan Friday. And so it goes.

Hey, Andy! How is the radiation going? Hope you are doing well.

I'm having Treanda/Rituxan too. I've just had my second round of it, and have the next starting March 4. . . four more to go. I'm glad it worked well for you; I like hearing that! How much longer do you have to do radiation? Hope it is going well.

Hey. I just found this site, and am looking around for other Follicular NHL people.

Hubby is 74, stage IV and just had his first chemo session. He was diagnosed in November. What kind of surgery did you have? There has been no talk of surgery for my husband.

Congratulations you big hulk of a cancer butt kicking man! Awesome! Feels pretty good, don't it? Welcome to the new club - the Cancer Survivors Club.

When will you get to go back to work?

That is such good news!

Hey Andy - how you feeling? You finished the last chemo - what is next?

I get my port out today, yeah! Another step toward life without cancer.

Merry Christmas to you Andy and a Happy New Year - hopefully cancer free - for both of us!

Tell me about how round #7 went? Is a scan next?

In 20/20 hindsight I wish I would have stopped chemo and Rituxin after 4 treatments, waited a month and then did a PET scan. The reason to wait a month is the chemo is still active, so let it work.

Actually it is active up to 60 days after last treatment. Then after waiting do a PET scan, not just a CT scan. That would have told us exactly where the "live" spots, if any, were and then we would have just done targeted radiation on only those spots.

Instead, we did three chemos and then a scan. There was quite a bit difference between the first scan before treatment and after three treatments. We assumed after six there would even more significant difference.

Instead after six there was almost no change since three. I always wondered it treatments 4,5 and 6 were necessary?

We did a CT scan after 6 but the resolution of the CT scan compared to a PET is like comparing a black and white photo to a full color photo. On the CT scan all we could do was see a mass. It could have been a mass of dead tissue. Especially since lymphomas that are follicular are so responsive to chemo the mass probably was dead lymph node tissue had been all stretched out and now was just scar tissue.

Not knowing from the CT scan if this was living or dead cancer we decided to radiate the whole entire field which was quite large. I think I told you before the field was 3.5 in wide, 1.5 thick and 11.8 in long.

Hitting my body with that much radiation over that large of an area is what knocked my counts down and my stamina.

In hindsight if we had done a PET, that lights up the living cancer so you know exactly what is living and what is dead. If we had done that about two months after ending my third treatment, we might have been in remission then and did not need further treatments of chemo or radiation. Or we might have found that we just had a few spots still needing low dose involved field radiation but not nuking me over the large area.

I think the only thing that prevented us from doing it this way was the insurance company saying how often they think we should have a PET scan. If I didn't know any better I would think the pharmaceutical companies and insurance companies were in on it together wanting more chemo and Rituxin treatments because three more of those treatments costs about three times as much as a single PET scan.

what Dr are you seeing I used to work in Claremont, CA

Congrats on the last chemo ....keep strong & best of luck 3 time colon cancer which has spread to the liver twice ....still fighting the fight here !! xxxx

Kicking cancer's ass one person at a time! Stay positive, stay strong and stay healthy! I know you can!

yahoo your last treatment that's awesome!

gratz and best of luck to you

Good luck.... many years of clean living.....

Congratulations...may this be lucky #7...happy holidays and a healthy happy 2014!

That is a picture of a healthy man! Good luck with the next scan. Again, fingers and toes crossed!!

How exciting when it is the last one
God Bless

Hi Andy,

Good luck on day 2 of Round 7. Fingers and toes crossed for you for good news on the follow up scan!

Andy - my scan results after three treatments and six were exactly the same. The words were used in my report "stable" and "persistent". I had a month between the last chemo and radiation. In 20-20 hind sight I wish after three of the Treanda chemo we would have stopped there and started the radiation. All those last three extra treatments did for me was reduce my blood counts. Then because we were talking about such a massive area that had to be radiated and within my pelvis my blood counts have crashed thru the floor to the point we had to stop radiation indefinitely. My last two labs only show that my blood counts have gone even further down. WBC 1.6, RBC 2.89 Hemo 9.8 Neutrophil 1.1 - Platelets did go up, amazingly enough, now at 121. But with the hemoglobin that low I am exhausted all the time. I am out of breath just going up a flight of stairs. For someone that works out twice a week with cardio that is a huge fall. I don't know what to do to stop the blood count fall. I don't know what to do to improve it.

Our plan is to do labs again this week and then the week after Thanksgiving get a PET scan to see what is actually remaining. I have had CT Scans but the area is so massive they can't tell what is scar tissue and what is active. The PET is the only way to know. I did eight radiation treatments. If the PET reveals there are some nodes still active we will radiate only those spots. But with my counts so low that might not be until February. Maybe instead of radiation of those spots we should be considering the high dosage Vit C which I have read about?

At this point I feel the worse I have felt since starting this journey eight months ago. Still trying to work from home. Tired most of the time.

I posted these to Dan's wall but thought you might find these interesting as well.

http://www.presentme.com/audio2012/20121111LRFLeonardCheson/
http://www.presentme.com/audio2012/20121110LRFLeonard2/

Andy - how you feeling? I hope things are going well for you. Give me an update when you get a moment. Wishing you well.

How did the craft fair go for you and your son? You should post some of the pics on here. The stuff I saw on Facebook was impressive.

How are you doing, Andy? It looks like we'll be finishing our chemo within two weeks of each other. I so hope we both get good scans and can ring in the New Year with no more chemo,

I have to pat you on the back. You are offering so many people support and caring on this site. You're a gift to What Next. I don't know what I would have done if I hadn't been getting pep talks and support from you. There are many others that feel the same way.

I'm a friend of Nicki's online just sending prayers and good thoughts your way.

Thanks Andy! You made my day:)