Hi, everyone. Saw the kidney doc today and had bad news - not responding anymore to the Cellcept and may have to do Cytoxin. But, have to do a kidney biopsy first to make sure.
Has anybody had experience with a kidney biopsy and/or Cytoxin? I'm in two weddings this summer, too, and I'm not sure how I'll be feeling if I'm on the Cytoxin.
I was not geared up for bad news today - I've been feeling better! So, needless to say I've had an emotional day. My husband's been great, and I'm trying not to get ahead of myself, but of course, I'm nervous, especially about the possibility of Cytoxin. To me, Cytoxin = no kids, and I'm only 27.
Any input, anyone?
Hi Missy; I am sorry to hear that your news was not what you expected. It is so hard to take that kind of news and still continue to be positive and hopeful. But, don't despair yet, especially since you say that you have been feeling better. I am always amazed at the number of options that are available for our illness and its symptoms. Here is what I've been able to find out about Cytoxan (aka: cyclophosphamide).
This drug belongs to the group of medicines called alkylating agents. It is used to treat cancer of the ovaries, breast, blood and lymph system, nerves, bone marrow, and tumors of the skin. It is also used for treatment in some kinds of kidney disease.
Cyclophosphamide interferes with the growth of cancer cells, which are eventually destroyed. Since the growth of normal body cells may also be affected, other effects will occur and some may not show up for months or years after the medicine is used.
The drug has been known to cause several different birth defects if it is taken at the time of conception or during pregnancy. The drug may also cause temporary sterility. It is suggested that you use birth control while taking the drug and if you intend to become pregnant, tell you doctor so that you can be weaned off of the drug prior to conception. The problem with this is that you put your kidney at risk once you stop the drug. So, you should discuss any pregnancy plans thoroughly with your doctor. There have been women who have had normal births while using the drug, not all pregnancies have birth defects. Cyclophosphamide passes into the breast milk, so if you begin the drug again after birth, do not breast feed.
Here are some important things to know when using the drug: It is important to drink extra fluids so that you will pass the drug in your urine. Empty your bladder frequently to avoid further harm or irritation to the kidney. Drink at least 3 quarts of fluid per day (7-12 cups). It is suggested that you take the drug first thing in the morning, to reduce the risk of bladder problems. Your doctor may want you to take it with food in smaller doses over the course of the day.
Because it is a drug used for cancer, it may cause nausea, vomiting, and loss of appetite. Your doctor will check your progress frequently while using Cyclophosphamide. The drug can lower the number of white blood cells in your blood, increasing the chance of getting an infection and it can lower the number of blood clotting platelets: Avoid people with infections, tell your doctor if you notice unusual bleeding or bruising or black, tarry stools, wash your hands before touching your eyes, the inside of your mouth or your nose. Avoid flu shots and other immunizations unless approved by your doctor.
Most Common Side Effects: Cough or hoarseness; fever or chills; lower back or side pain; missed menstruation; painful urination; darkening of skin or fingernails; loss of appetite; nausea or vomiting.
With long-term treatment: Blood in urine; dizziness, confusion or agitation; fast heartbeat; joint pain; shortness of breath; swelling of feet or lower legs; fatigue or weakness; diarrhea or stomach pain; redness of face; headache; skin rash or hives or itching; swollen lips.
I hope that this information has been helpful to you. As you can see, nothing is set in stone and each individual may respond differently. Do not give up hope of having children yet :lol:
Peace and Blessings
The biopsy went great - not half as much pain as they prepared me for. Looks like I still have active disease in my kidneys, though, so will probably have to start Cytoxan sooner than later. Sure hope it works, as the Cellcept doesn't seem to be getting me any further anymore.
Anybody have experience on Cytoxan they want to share with me? Successful?
I hope that the Cytoxin works for you!! Keep us posted on how you are doing! :lol:
An update - still no decision on whether to start Cytoxin or try a bit longer on the Cellcept to see if it kicks in again. I did have to up my Prednisone again - Break out the kleenex! Here comes the emotional rollercoaster!
Anyway, tomorrow I have another opinion from a different nephrologist in another city. I don't expect to hear different news, but maybe another perspective. My regular kidney doc says it's going to be a judgement call on what to do - it's a gray area with nor "right" or "wrong." My biopsy said I still have some active disease, but mostly just "chronic fibrosis" (or permanent damage) which is better than active disease.
We'll see... I'll keep you updated and thanks for caring!
Hi Missy -
I am keeping you in my prayers. Yes..please keep us posted on how things are going and what the new doctor says!
Best of Luck
Thanks so much, Saysusie. I really do appreciate the support. I have to say that despite being sick, I feel so fortunate to have caring people in my life. I can't say it enough - it makes a HUGE difference! I will see my regular Nephrologist again next week, and I'm leaning toward no Cytoxan until or unless absolutely necessary. If I'm in a holding pattern now, the consequences seem to outweight the possible benefits at this time. But, who knows, I might change my mind next week!
You are more than welcome :lol:
Best Of Luck
Yipee! I had unexpected great news at the nephrologist yesterday. After he had me all psyched that I had no options other than Cytoxan, all of a sudden my proteinuria has dropped dramatically! I'm not counting my chickens, but we might be headed towards a Nephritis remission! YippeeEEEEE! He said this is very unusual, as I've been on the Cellcept for 6 monthsnow, and if it's going to induce remission, it usually does it sooner. I couldn't be happier........so those prayers and thoughts of healing energy must be working!
That is GREAT NEWS!!!! I am SOOOO happy for you!!
It may be unusual...but it is welcome news all the same!!
Best Of Luck!