Non-hodgkin's Lymphoma Support Group
Non-Hodgkin lymphoma is a type of cancer arising from lymphocytes, a type of white blood cells. It is so called because of its distinction from Hodgkin's disease, a particular subtype of lymphoma. It is in fact an overarching term of many different forms of lymphoma, each with individual characteristics. Most cases start with infiltration of lymph nodes, but specific...
Thought that you all might want to hear this:
A LONG DAY (8.5 hours of fun). After the preliminary drugs (benadryl, tylenol, a 5 day injection of a anti-nausea drug, and steroids (dexamethazone?)), started with the Rituximab at 9AM. After about 2 hours they raised the drip rate and I had an allergic type reaction starting in the roof of my mouth to the right side only of my lips, nose and eye. Had to shut it down, and give IV bendaryl and the steroid to stop the reaction. Then we started again. It took until 4:30PM to finish the Rituximab. By then the on facility doctor said that we would need to move the CHOP to tomorrow. My brother and I pushed, and we got him to agree to stay on until 5:30 so that the last 3 drups could be administered. Done. Then following the other website (www.lymphomasurvival.com) we took a 30 minute brisk walk, then ate dinner (salmon, rice and a salad). After that I took an oral antinausea pill, and then took a 30 minute hot bath. Since I am still loaded up on the steroids from earlier today, I still feel basically ok (just a bit of flu like symptoms). I am getting ready to take a Lunesta (sleep) and Lorazepam (sleep/anti-anxiety) per docs instructions, and hope to get a reasonable night's sleep. Tomorrow at 4PM is the Neulesta shot to bring up my white boold cell count. I have heard from a number of sources that this shot causes deep bone pain. A breast cancer patient who was sitting next to me said that this shot usually puts her down for a week (cure, believe it or not, is Claritan {antihistamine}).
I am sure that when the steroids wear off, this will get rougher, but who knows it might not. It will be, what it will be. Just trying to do my best. Only 7 more of these to do.
I did start 200 mg of CoQ10 for the heart issues from the Doxorubican (or Adriamyacin, the 'H' is R-CHOP)
So there it is. I am sure that I will have more developments by tomorrow.
Dave - (dx with Stage 3a grade 1 fNHL on 10/23/11. Two of my messenteric masses enlarged to 10 and 11 cm, respectively. 5/12 - PET scan and a biopsy of the abdominal area ===> High grade Diffuse Large B-Cell Lymphoma requiring immediate treatment (8 courses of R-CHOP)
A LONG DAY (8.5 hours of fun). After the preliminary drugs (benadryl, tylenol, a 5 day injection of a anti-nausea drug, and steroids (dexamethazone?)), started with the Rituximab at 9AM. After about 2 hours they raised the drip rate and I had an allergic type reaction starting in the roof of my mouth to the right side only of my lips, nose and eye. Had to shut it down, and give IV bendaryl and the steroid to stop the reaction. Then we started again. It took until 4:30PM to finish the Rituximab. By then the on facility doctor said that we would need to move the CHOP to tomorrow. My brother and I pushed, and we got him to agree to stay on until 5:30 so that the last 3 drups could be administered. Done. Then following the other website (www.lymphomasurvival.com) we took a 30 minute brisk walk, then ate dinner (salmon, rice and a salad). After that I took an oral antinausea pill, and then took a 30 minute hot bath. Since I am still loaded up on the steroids from earlier today, I still feel basically ok (just a bit of flu like symptoms). I am getting ready to take a Lunesta (sleep) and Lorazepam (sleep/anti-anxiety) per docs instructions, and hope to get a reasonable night's sleep. Tomorrow at 4PM is the Neulesta shot to bring up my white boold cell count. I have heard from a number of sources that this shot causes deep bone pain. A breast cancer patient who was sitting next to me said that this shot usually puts her down for a week (cure, believe it or not, is Claritan {antihistamine}).
I am sure that when the steroids wear off, this will get rougher, but who knows it might not. It will be, what it will be. Just trying to do my best. Only 7 more of these to do.
I did start 200 mg of CoQ10 for the heart issues from the Doxorubican (or Adriamyacin, the 'H' is R-CHOP)
So there it is. I am sure that I will have more developments by tomorrow.
Dave - (dx with Stage 3a grade 1 fNHL on 10/23/11. Two of my messenteric masses enlarged to 10 and 11 cm, respectively. 5/12 - PET scan and a biopsy of the abdominal area ===> High grade Diffuse Large B-Cell Lymphoma requiring immediate treatment (8 courses of R-CHOP)
About neulasta, that was probably the WORST part of the entire chemo therapy for me. The first time I did the shot, the deep bone pain began within an hour. I could not move for 24 hours. But shot #3 and 4 were the worst. You might want to ask if there is a painkiller you can take. I didn't have one, but maybe your doctor will give you something.
I'm just trying to be honest about that drug. You might need heating pads or bags of ice to "try" to make the pain more bareable. So just be ready for whatever you will need before you give yourself the shot.
Sending good vibes your way. I'm sure you will do just fine.
Thanks for your comments and thoughts.
The young lady who sat next to me in the Infusion Suite had told me her experiences with the Neulasta. She also mentioned using Claritan (yes, the antihistamine) to alleviate the deep bone pain. I had read about that elsewhere. And when 2 nurses confirmed that, I stopped on the way home from getting the shot and bought a box of quick disolving Claritan Readitabs. I took one immediately. So far 5 hrs later everything is fine. I also heard that shot 3 and 4 were worse. Hope the Claritan keeps doing the trick. I also went out for a long walk right after dinner. I plan to play "all the cards".
When I've had Rituxan, they gave me 2 Tylenol pills before they start the drip, then a bag of Benedryl before the Rituxan. I have had similar reactions when the drip was too fast. Slowing it down or stopping it seems to help. I'm glad you made it and they were able to give you the rest of the treatment. I'm also so glad to hear you are doing okay after your shot.
Hang in there. I always thought about the medications as an army fighting the cancer out of my body. My job was to accept it, feed my body well, and be kind to myself while I healed.
I hope you are still okay. Do keep us posted.
As long as you now know how you react to it, the doctors can be looking out for that for the next time.
I'm also so glad that they now know Claritin helps with the bone pain. I think you will do just fine.
Very best wishes to you.
I'm kinda thinkin' about Rocky Balboa, while Clubber Laing was beating the crap out of him saying after each punch "Your not so tough, your not so tough..." (before Rocky knocked him out). Gonna take this thing out!!
Take care Dave,
The good thing about my oncologist/hematologist is that he is in a practice with 6 others, and they are closely involved with Virginia Cancer Specialists which is a group of 20 docs who are all looking over each others shoulder. The oncologist that I started with (who I fired because of his bedside manner) is still involved in my case, I just don''t see him anymore. Real good clinician, but lacking in the people skills side. The new guy is great on both.
Wasn't the bone marrow test fun?
I did 6 months of watch and wait. Felt like I had an axe over my head for the whole time. Aside from dealing with the R-CHOP, I am mentally in a good place now. The treatment is definitely working. I've lost 17 lbs. and 3 inches from my waist (not a bad thing - I had two masses in my abdominal area 11 and 10 cm, respectively, and the lump in my neck is gone)
That said, with indolent (small cell) NHL, watch and wait is a very valid treatment option and doesn't necessarily mean you aren't doing anything.
Glad you are doing okay Dave. I'm very glad your tumors are responding so quickly to the chemo. Most excellent!!
So far the chemo has been amazing. Just started (19 days into it) to loose my beard (I shaved my head 5 yrs. ago). Next treatment in 2 days, but labwork tomorrow.
You are right, during my 6 months of watch and wait (and I absolutely concur, it was the right treatment), I always felt like I had an axe over my head. But now, I am in a good mental place ... we're doinf something about the escalated aggressive situation (but I still may have the low grade fNHL in me, the 2 situations may have been independent, but concurrent), and I still have the very high PCBs in my body that probably caused this in the 1st place. So I wonder if even after the cure, that it may come back (since the cause may still be there. Maybe it will take another 60 yrs to com back. I'll dela with it at my 120th birthday)