Last Scheduled Infusion

Unknown

I get R tomorrow for the 23rd time tomorrow. That ends my 2 year maintenance regime. My onc's plan is to go get a PET scan and then decide whether to simply watch and wait, do something like R-CHOP or to continue with Rituxan. Last scan the only thing was a 10% enlargement of my liver. But I am having skin lesions and a dark stripe in one toenail. Fingernails have gotten better. However I do have severe fatigue, pains in shoulders and knees and just generally feel bad. hoping for the best.

Has anyone out there taken R for more than 2 years as maintenance then had relapse? If so what symptoms signalled the relapse?

COBRA666

23 TIMES

Dang !!!23 times...No I have only had my 2 year maintenance. Afraid I can't help too much. I didn't know they even gave R for more than 2 years. I know you will be telling the Dr. about it tomorrow. Keep us informed as I know you will and good luck. Be thinking of you. John

Rocquie

Rituxan

I had Rituxan 8 times with R-CHOP plus 5 of 12 scheduled for maintenance--so a total of 13 times so far. When I was first diagnosed, I met a man who told me that he had been on Rituxan for 16 years! I was in my initial "freaked out" mode, so I never asked him any details. Don't even know who he was. Now I wish I could talk to him.  

I understand your worry about your treatment coming to an end. Like everyone else, I worry about every little twinge, bump, sneeze, itch, ache, fatigue, and on and on. . . And I reassure myself with the fact that I am still on Rituxan. I don't know either, what will be next. 

I also have a tremendous attachment to the nurses who have taken such good care of me. What will I do without them?

I sure hope you are not facing a relapse.  I look forward to hearing more from you and from others about this too. 

All the best and big hugs,

Rocquie

 

Unknown

Rocquie said:

Rituxan

I had Rituxan 8 times with R-CHOP plus 5 of 12 scheduled for maintenance--so a total of 13 times so far. When I was first diagnosed, I met a man who told me that he had been on Rituxan for 16 years! I was in my initial "freaked out" mode, so I never asked him any details. Don't even know who he was. Now I wish I could talk to him.  

I understand your worry about your treatment coming to an end. Like everyone else, I worry about every little twinge, bump, sneeze, itch, ache, fatigue, and on and on. . . And I reassure myself with the fact that I am still on Rituxan. I don't know either, what will be next. 

I also have a tremendous attachment to the nurses who have taken such good care of me. What will I do without them?

I sure hope you are not facing a relapse.  I look forward to hearing more from you and from others about this too. 

All the best and big hugs,

Rocquie

 

Thanks guys

I will be sure to let you know how it comes out. All my best.

allmost60

unknown said:

Thanks guys

I will be sure to let you know how it comes out. All my best.

Best wishes..

I remember my last day getting Rituxan and how anxious I was at the thought of not having anything in me fighting off the cancer. It was a mixed bag of tricks forsure. On the one hand I wanted to be done and on the other I felt uneasy with taking nothing. It will one year in Feb with no Rituxan and so far, so good. I will keep you in my prayers. Please share back what your PET scan shows. Best wishes...Sue

Follicular NHL-stg3-grd2-typA-Dx 6/10-age 63)

COBRA666

allmost60 said:

Best wishes..

I remember my last day getting Rituxan and how anxious I was at the thought of not having anything in me fighting off the cancer. It was a mixed bag of tricks forsure. On the one hand I wanted to be done and on the other I felt uneasy with taking nothing. It will one year in Feb with no Rituxan and so far, so good. I will keep you in my prayers. Please share back what your PET scan shows. Best wishes...Sue

Follicular NHL-stg3-grd2-typA-Dx 6/10-age 63)

Sue,

  Seems like just yesterday when I replied to you back in July of 2010 doesn't it?  It does to me anyway. John

Unknown

Today's infusion

Everything went well today. Pretty uneventful. My onc recommended another infusion in March. He is more concerned about my toenail than anything else. I am seeing a specialist (dermatologist) to get it evaluated for possible melanoma. Getting a scan after the next infusion. Otherwise I am doing very well tonight. We just chug along! Nite all.

allmost60

COBRA666 said:

Sue,

  Seems like just yesterday when I replied to you back in July of 2010 doesn't it?  It does to me anyway. John

Time...

I Know John...I remember everything from 2010 as if it was yesterday. Funny how certain things fade from our memory, but not so much once we are told "it's cancer"! I can remember the look on my doctors face as he spoke and the numb quiet between me and Steve as we left his office. The next month was a blur of activity with all of the testing, but still remember the whole process as clear as a bell. I was changed in a way only a cancer patient can understand. But...here we are today and God willing for many many years to come!

Love...Sue

allmost60

unknown said:

Today's infusion

Everything went well today. Pretty uneventful. My onc recommended another infusion in March. He is more concerned about my toenail than anything else. I am seeing a specialist (dermatologist) to get it evaluated for possible melanoma. Getting a scan after the next infusion. Otherwise I am doing very well tonight. We just chug along! Nite all.

Uneventful is good...

Hi,

 I will take uneventful anytime I can get it!  I'm glad you are doing well, and you sound like you are ready for whatever comes next. We are here for you too, so we will all chug along together. Let us know what the Dermatologist has to say. Take care...Sue

(Follicular NHL-stg3-grd2-typA-Dx 6/10-age 63)

Unknown

allmost60 said:

Uneventful is good...

Hi,

 I will take uneventful anytime I can get it!  I'm glad you are doing well, and you sound like you are ready for whatever comes next. We are here for you too, so we will all chug along together. Let us know what the Dermatologist has to say. Take care...Sue

(Follicular NHL-stg3-grd2-typA-Dx 6/10-age 63)

Dermatologist

He took biopsies. He expects the results by Friday. He said he was pretty sure they would come back negative.

Unknown

unknown said:

Dermatologist

He took biopsies. He expects the results by Friday. He said he was pretty sure they would come back negative.

Well ........

it was squamous cell carcinoma. Usually not serious as long as its on the skin and treated early. Under nails can cause loss of said nail or toe.  NIH website says it is a known possible side effect of Rituxan. No way to tell for sure what caused it but could be weakened immune system due to lymphoma treatment. 

Oh well $h!t happens. I will just keep plodding along. Will know about the future of the toe next month. Saw my grandson this weekend. Growing like a weed!

allmost60

unknown said:

Well ........

it was squamous cell carcinoma. Usually not serious as long as its on the skin and treated early. Under nails can cause loss of said nail or toe.  NIH website says it is a known possible side effect of Rituxan. No way to tell for sure what caused it but could be weakened immune system due to lymphoma treatment. 

Oh well $h!t happens. I will just keep plodding along. Will know about the future of the toe next month. Saw my grandson this weekend. Growing like a weed!

Thanks...

Hi,

  Thanks for sharing, at least now you know what's going on. I like to think that Rituxan does more good than harm to us, but with research I've done, there are possibilities of heart and artery problems after use. Probably more problems not reported, but with all treatments we take what we can get to beat the cancer. I had both of my grandchildren over this weekend also and that always brings sunshine to my day! Lizzy will be 3 in May and Brenden will be 1 on March 5th. Grandbabies are just the best! Let us know what you find out next month with the toe. In the meantime...enjoy your sweet grandson...they grow like weeds indeed!  Best wishes...Sue

(FNHL-stg3-grd2-typA-Dx 6/10-age 63)

Unknown

allmost60 said:

Thanks...

Hi,

  Thanks for sharing, at least now you know what's going on. I like to think that Rituxan does more good than harm to us, but with research I've done, there are possibilities of heart and artery problems after use. Probably more problems not reported, but with all treatments we take what we can get to beat the cancer. I had both of my grandchildren over this weekend also and that always brings sunshine to my day! Lizzy will be 3 in May and Brenden will be 1 on March 5th. Grandbabies are just the best! Let us know what you find out next month with the toe. In the meantime...enjoy your sweet grandson...they grow like weeds indeed!  Best wishes...Sue

(FNHL-stg3-grd2-typA-Dx 6/10-age 63)

Thanks for the input

Thank you for your response Sue. I had been concerned about the nails. You may remember that I mentioned fingernail issues some time back. That pretty much went away except on one finger. It is improved but now a knot is forming in the finger over where the quick of that nail is located.

I am very torn as to whether I should take that one last extra Rituxan infusion or just call it quits. The Dr. said it was my option but he recommended it. Rituxan is a good thing but one can have too much of even a good thing. I am trying to schedule a phone con with my 2nd opinion Dr. at MD Anderson to see what she says. She would have given me chemo to start instead of single agent Rituxan. I am considering going back there for my next scan. I left there disappointed last time because it was such a hectic place. I gathered and took all my scans to them. Still when the radiologist read my scan he said there were no previous scans to compare it to (I took several to him). I would be scheduled for a 7 AM appointment and end up sitting there till 9 before I was seen. I didn't think I got my $47K worth  from it. Still they are the best at lymphoma, or so I have been told.

Yes grandkids are great. I have only one. He is 15 months old and runs around the house like a banshee. Chatters constantly. A real sweetheart. My Y chromosome is safe for another generation! My hope is that it someday goes to Mars!

allmost60

unknown said:

Thanks for the input

Thank you for your response Sue. I had been concerned about the nails. You may remember that I mentioned fingernail issues some time back. That pretty much went away except on one finger. It is improved but now a knot is forming in the finger over where the quick of that nail is located.

I am very torn as to whether I should take that one last extra Rituxan infusion or just call it quits. The Dr. said it was my option but he recommended it. Rituxan is a good thing but one can have too much of even a good thing. I am trying to schedule a phone con with my 2nd opinion Dr. at MD Anderson to see what she says. She would have given me chemo to start instead of single agent Rituxan. I am considering going back there for my next scan. I left there disappointed last time because it was such a hectic place. I gathered and took all my scans to them. Still when the radiologist read my scan he said there were no previous scans to compare it to (I took several to him). I would be scheduled for a 7 AM appointment and end up sitting there till 9 before I was seen. I didn't think I got my $47K worth  from it. Still they are the best at lymphoma, or so I have been told.

Yes grandkids are great. I have only one. He is 15 months old and runs around the house like a banshee. Chatters constantly. A real sweetheart. My Y chromosome is safe for another generation! My hope is that it someday goes to Mars!

No chemo....

Hi,

  I am curious why the doctor you have now did not do chemo first and then Rituxan maint for 2 years? Your diagnosis is the same as mine except you were stage 4 and I was stage 3. I had CVP-R for 6 rounds and then immediately started my 2 years of Rituxan, (1 infusion every other month). It will be one year this Friday since my last Rituxan infusion. I can't see any reason not to finish your last Rituxan infusion, but getting feedback from the doctor at MD Anderson first sounds like a good idea. My yearly scan is coming up the first of April and I'm curious to see how everything looks now that I've been done with all treatments for a year now. A little anxious also, but hoping for all clear and nothing new going on. Well...let us know what you decide to do. Talking about it takes the edge off, at least for me it does.

Best wishes...Sue (FNHL-stg3-grd2-typA-Dx 6/10-age 63)

 

Unknown

allmost60 said:

No chemo....

Hi,

  I am curious why the doctor you have now did not do chemo first and then Rituxan maint for 2 years? Your diagnosis is the same as mine except you were stage 4 and I was stage 3. I had CVP-R for 6 rounds and then immediately started my 2 years of Rituxan, (1 infusion every other month). It will be one year this Friday since my last Rituxan infusion. I can't see any reason not to finish your last Rituxan infusion, but getting feedback from the doctor at MD Anderson first sounds like a good idea. My yearly scan is coming up the first of April and I'm curious to see how everything looks now that I've been done with all treatments for a year now. A little anxious also, but hoping for all clear and nothing new going on. Well...let us know what you decide to do. Talking about it takes the edge off, at least for me it does.

Best wishes...Sue (FNHL-stg3-grd2-typA-Dx 6/10-age 63)

 

Tumor burden

He said it was because I had a low tumor burden and no involvement of vital organs. Rituxan seemed the least drastic of the the available courses. If it had not worked he could have stopped it and started chop at any time. He said it was the "European Approach".

allmost60

unknown said:

Tumor burden

He said it was because I had a low tumor burden and no involvement of vital organs. Rituxan seemed the least drastic of the the available courses. If it had not worked he could have stopped it and started chop at any time. He said it was the "European Approach".

Thanks..

Hi,

  Well that makes sense. I had multiple CM size tumors in my groin on both sides, also in the back of my stomach and neck, so chemo was started within 3 months of all testing being completed. I understand now why your doctor took a less aggressive approach. Thanks for answering my question.  Keep us posted...Sue

(Follicular NHL-stg3-grd2-typA-Dx 6/10-age 63)