2nd round of Rtx starting Tuesday

[KathyB]

Hi all & Happy St. Patrick's Day! :biggrin1:

With gall bladder surgery behind me and my follow-up doctor appointment Monday, I'm ready to begin my 2nd round of chemo (Rtx) on Tuesday. It will be administered in double doses twice (15 days apart) rather than the once/week for 4 weeks. I had no side effects during the first round. Is there any advice from those of you who have undergone the double dose? How long does it take? Is it any tougher than the smaller dose? Your thoughts are appreciated!

KB

[pwc51]

I have only experienced one course of Rtx - it was the double dose regime. Each dose took about 6 hours - take a book to read! No particular side effects but the effect on my WG was noticeable and very rapid.

[Dryhill]

Exactly like pwc51 (not surprising as we have the same doctor and treated at the same hospital). I also took a DVD to watch and a crossword puzzle book - six hours is a very long time. In just over a week I am seeing/feeling some slight improvement.

Jim

[KathyB]

My first infusion back in early September lasted 5 hrs as they checked on me every 30 minutes. By the 4th one, I was down to 3.75 hrs! I understand from reading on this forum that "results" aren't for 6-8 weeks. I remember feeling pretty well by mid-October then got fungal pneumonia by the end of the month. My fear is being immune compromised and once again susceptible to problems. Of course, my prednisone is down to 7.5, so that should help, right?

We are just putting our house on the market, so we will be staying down in NC during weeks of chemo so as to stay away from germy folks running thru our house!

KB

[Sangye]

Kathy, the infusions will take the same amount of time since it's roughly the same amount of rtx. Your infusion center should not be in a hurry to get it done. The nurses at JHU's infusion center have told me that many centers rush rtx (and other infusions) and the patient winds up getting an allergic reaction. No matter how many times you've had rtx they should still start it slow and increase it every half hour or so, while checking your vital signs every half hour.

I'm glad the infusions go well for you. I can't even imagine that!

Also, just a side note but important to know: rtx isn't chemo.

[Dryhill]

Kathy, the infusions will take the same amount of time since it's roughly the same amount of rtx. Your infusion center should not be in a hurry to get it done. The nurses at JHU's infusion center have told me that many centers rush rtx (and other infusions) and the patient winds up getting an allergic reaction. No matter how many times you've had rtx they should still start it slow and increase it every half hour or so, while checking your vital signs every half hour.

I mentioned to one of the senior nurses about some hospitals speeding up subsequent infusions and she told me that they had been informed by the manufacturer of Rtx that they MUST NOT speed up infusion as it can cause an allergic reaction, as mentioned by Sangye. The hospital were also told that speeding up the infusion lessened the effectiveness of the drug.

Sangye I was told Rtx is not a chemo just as you mention, but why was it administered by the chemo unit?

Jim

[KathyB]

Interesting info all. Yesterday's Rtx was about 200 (ml?) more than the usual 800 I received 4x's each infusion back in September. (Hope I understood it correctly). It took about about 5 1/2 hrs. The difference in time wasn't a rush by the staff. It was specifically related to "stoppage" due to air in the line types of equipment issuesqnd having to re-set. The staff routinely comes in every 30 minutes to check vitals, etc. then the volume flow increases by the prescribed amount. Seemed very routine -- did they get this wrong?

Re calling it chemotherapy -- when I was first told about Rtx and had first treatments, it was in the cancer unit. All the staff called it chemo and I asked why I was in the cancer unit. They said it was because it was a chemical compound used to control a disease and administered the same as with cancer patients. Of course, we started knowing the term "chemotherapy" with cancer. Is it incorrect to use the term?

BTW, the infusion went very well yesterday. No negative reactions. Next one is now scheduled for April 3. Blood work and urine were all normal except for creatinine which was 1.9. Aside from still be tired, all is well!

KB

[drz]

Sangye I was told Rtx is not a chemo just as you mention, but why was it administered by



RTX has been used more and longer in treating cancer than Autoimmune diseases. Its use for treating Wegs is rather recent. Cancer units have the most experience giving this drug so ....

[Al]

Most doctors refer to rituxan (aka rituximab) as a "biological"; as a synthetic antibody (the "mab" suffix stands for Monoclonal AntiBody), it mimics natural biological agents. Every med can can be called "chemo", in the sense that it is a chemical used to treat disease (what isn't chemical, after all?). But "chemo" has come to mean a class of infused chemicals, which oncology nurses have the most experience administering. In this sense, anything that needs to be infused can be loosely termed chemo. However, rituxan is a large molecule drug, as are most or the fancier biologicals, so it doesn't quite qualify as chemo to most medical professionals. Prednisone, by the way, is technically a biological as well, since in mimics natural chemicals. But it is not nearly so complex in design, or so expensive, as those in the -mab class.

Al

[KathyB]

Thanks for the clarification, Al! I always appreciate the info shared in our forum!

KB

[drz]

Every[/I] med can can be called "chemo", in the sense that it is a chemical used to treat disease (what isn't chemical, after all?).
Al

One of the earliest forms of chemotherapy was use of arsenic to treat syphilis. I think Al is right when he says some day we will view our current treatments of Wegener's about the same as we now look back on using arsenic to treat syphilis. Hope these medical advances come quickly.

[Sangye]

Kathy, I think that sending you to a cancer unit is probably a technical requirement. Some hospitals don't have an infusion clinic in addition to a cancer unit so everyone has to go there. JHU has both, so patients only get chemo in the cancer unit, not rtx.

You must have gained weight since your last infusion, which would require a higher dose of rtx.

Glad it's going well and you don't have bad side effects!

[drz]

Kathy, I think that sending you to a cancer unit is probably a technical requirement. Some hospitals don't have an infusion clinic in addition to a cancer unit so everyone has to go there. JHU has both, so patients only get chemo in the cancer unit, not rtx.


Where do cancer patients go that get Rituxan at JHU? Just curious? At Mayo my wife got it in one of the oncology units.

[Sangye]

I'm not sure if they go to the Cancer clinic or not. I imagine they might, just because there's more room.

[KathyB]

Medical College of Virginia (in Richmond -- affiliated with Virginia Commonwealth University) is my home base medical facility. My first infusion was in-patient and in oncology. Each subsequent infusion as an out-patient was in the Transitional Care Unit of the hospital. People come and go (out patient) for infusion treatments. Coincidentally, the unit is down the hall from dialysis (out patient). Sangye, I actually have lost weight since my initial round of infusion back in September. I understand the formula is based on weight, but I thought I received more Rtx during this round because I'm only receiving two treatments rather than four --?? Perhaps I need to have clarifying conversations with my rheumy!

[Sangye]

If you're doing 2 infusions, you get 1,000mg each time. That's standard for everyone, regardless of weight. The 4-infusion protocol is weight-based.

[KathyB]

Ok, then all is fine...thanks!