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lynette
MemberAndrew,
Are you certain that it is septrin? Septra is an antibiotic used for a number of infections. It can be given by mouth or IV. It has the usual side effects of most antibiotics: nausea, diarrhea, yeast infections. It is tolerated fairly well.
LynetteMemberSusan,
Did you mention that your Dad has CHF? This is probably adding to his fatigue. With CHF, the heart is not pumping effectively, therefore the body and lungs are not getting enough oxygen. When someone is anemic, the body loses some of its capacity to transport oxygen. The combination can cause a great deal of fatigue. MDS does not target the kidney per say. However, many of the medications used can be harmful to the kidney. My Mom has 1 kidney, however she opted for Chemo, since without it she did not have much of a chance at remisssion. Although the drugs were known to be nephrotoxic, she came through without any residual kidney damage.
You mention a good point. It is natural for the kidneys to lose some of their ability to function as one ages. Ususally, we don’t really notice a change unless there is an underlying disease such as Diabetes.
Stay stong–I know it’s hard!
LynetteMemberHi Pierre,
My mom is a patient of Dr. Feldman at NYP. He has been outstanding–professional and very knowledgeable about MDS and Leukemia. NYP is a center of excellence.
Good luck!MemberLydia,
Hi! Lamisil can cause liver toxicity. Although rare, there are documented cases. In addition, Lamisil can decrease WBCs. Specifically, it can cause neutropenia. It can also decrease platelets. these side effects are noted after many doses of the medication. I have not found that it affects ferritin levels. Toe-nail fungus should not raise ferritin . Don’t panic. It sounds like your moving in the right direction by finding a new doc!!
LynetteMemberLucy,
Glad to hear that Mom is out of the Hospital. There was a recent article noting the benefits of green tea for patients with blood cancers. My Mom and I have a cup everyday(decaf).
LynetteMemberHi Lynne,
Procrit is an interesting drug. It was originally developed for anemia related to end stage kidney disease. When positive results were discovered, other patients were given the drug. It is used for cancer patients, HIV patients, and patients with Rheumatoid athritis.
Procrit is synthetic Erythropoietin, a hormone naturally made by the kidney. However, it does not work on the kidney. Rather, it works on the erythroid tissue in the bone marrow, where natural e-poietin would work. The drug stimulates the formation of RBCs.
Although there is no known direct harm to kidney, Procrit can cause side effects. It can cause hypertension. Prolonged hypertension can lead to kidney disease. Also, Procrit can increase the body’s levels of BUN, creatinine, uric acid, and potassium. This can be harmful to the kidney.
For most patients however, the benfits of Procrit have outweighed the risks.
Hope this was helpful!
good luck, LynetteMemberSusan,
Yes, there is hope. My Mom was given 3 months to live. Now, because of a clinical trial, she is in remission. Had we not taken a chance, with a great deal of faith and hope, Mom might not be here enjoying life.
Stay positive!
LynetteMemberLynne,
Procrit is synthetic EPO. It replaces the hormone that the kidney naturally produces. A side effect of Procrit is hypertension. This in turn can affect the kidney. When a patient has hypertension, there is usually diminished blood flow to the kidney. Hypertension is a common cause of renal insuffiency. Interestingly, one of the target groups for Procrit was end-stage renal disease patients who were on dialysis. Their kidneys were no longer functioning anyway! PerhaMemberHi Mildred
My Mom had nausea, but not intense. She also experienced fatigue and numbness in her fingers and toes. Thankfully side effects subside once off chemo
LynetteMemberHi and Welcome. As with Suzanne, my Mom progressed to AML quickly, within 3months, while on oral Chemo. Other than feeling fatigued, she had few other symptoms. I agree that it is so important to go to a Center of Excellence. My Mom’s local hem/onc doctor doesn’t treat MDS. Luckily she referred her to New York Presbyterian. The only thing that her local doctor could offer was a promise that she would make her comfortable. Instead, she is in remission. Good luck with your Mom, and ask as many questions as you deem necessary.
MemberHi Janice,
Generally speaking, the Arsenic is tolerated very well. However, it can cause a temporary condition called “prolonged q-t syndrome” which is a heart rhythm problem. The problem is reversed(if it occurs) once the Arsenic is stopped. It can cause fluid retention which my Mom did have both times. If the heart and kidneys are healthy to begin with, there is usually no residual problem. It can cause temporary kidney problems, but my Mom only has 1 kidney, and she had no kidney problems at all. She was observed very closely because of this.
I know how difficult this is for you, it is not without risks. I will keep you in my thoughts and prayers.
LynetteMemberJanice,
My Mom is on the same trial. She is doing well and in remission. The 2 weeks in the hospital were, at times, difficult. She did not want to be 2 hours away from her family. I stayed w/ her a few nights, and my Dad took a hotel room several times. The nurses were very familiar w/ the protocol, which is a plus. There have been very encouraging results from this trial. The arsenic had a few side effects: numbness in fingers and toes;rapid heart rate; mild nausea. My Mom was not a candidate for Vidaza.
It is a difficult decision, but since my Mom had progressed to AML, we were running out of options.
Good luck.
LynetteMemberHi Janice.
Mom’s doctor is Eric Feldman. He is excellent.
Very knowledgeable in Leukemia and MDS. He gave my Mom several options, which gave us hope.
Mom is on a maintenance protocol presently. She recieves chemo every 4 -5 weeks(outpatient 2 days at NYP). Yesterday, we were at NYP and we met another woman w/ MDS who has been in remission for nearly a year after being on the same clinical trial. There is hope!!
LynetteMemberHi Janice and Welcome. My Mom is a patient at New York Presbyterian. In Aug 05, she was dx w/ RAEB-T, then progressed quickly to AML. She participated in a clinical trial and is now in remission. The doctors are great–they know MDS and Leukemia very well–and they gave us hope. They will have options for your Dad. They were much more encouraging than the literature or what you might read on the Internet. Be strong.
Good Luck,
LynetteMemberDee,
Did you ever try “Magic Mouthwash” for your mouth sores. A prescription is needed, but it works wonders for patients with painful mouth sores. Typically, it is a mixture of viscous Lidocaine(for numbing), Benadryl(for inflammation), and Maalox(for excessive acid production). It is used three times a day as a swish(never swallowed). Also, if you see white patches in or around the sores, your doctor might want to prescribe Nystatin. It is an anti-fungal that works very well.
Good luck w/ the new treatment. You’re in my prayers.
Lynette -
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