can you share your experience with ifosfamide? can we have a general discussion?
October 7, 2018 at 8:46 AM #7505denneParticipant
Ive had the 6 rounds and it is shrinking my multiple tumors found in the lung. It is a neuro toxin and takes its toll. Has anyone’s Doc mentioned how many rounds can be given before one must be taken off due to bone marrow suppression. Carbo did not work for me, Is there any other treatment option following this regiment.
Please tell me about your experience with ifex
October 18, 2018 at 3:34 PM #7581
I’m happy to hear that ifosfamide is shrinking the lung tumors! It is difficult drug, but such good news that it is working!
I hope that others will join in this discussion on ifosfamide, but until then, I wanted to share Diane’s experience with the medication. She was on ifosfamide (with Mesna to protect the kidneys while on the drug) for 5 months. Her disease was stable on this, but she had to switch off of it after 5 months because of bone marrow suppression. It wasn’t an easy drug by any means, but she felt that having stable disease made it worth continuing.
Her next treatment was cyclophosphamide (Cytoxan) with Avastin (an anti-angiogenic that slows the growth of blood vessels that “feed” the tumor). She was on Cytoxan and Avastin for 1 year, 10 months, and it was easier to tolerate. This regimen was prescribed by Dr. Michael Birrer.
Everyone responds a bit differently to each of these drugs, but it’s helpful to learn from others. Diane wrote up an outline of her treatments and included them in the Forum under the topic “Chemo Treatments and Options” – “What has worked for you?”
Hope this helps and that others weigh in on their experiences, too.
All the best,
October 19, 2018 at 8:31 AM #7584Brenda RParticipant
Hi. I just finished 7 rounds of Ifosfamide. Six with Paclitaxel and one with Taxotere. Oncologist wanted me to do 1 more but the Taxotere did not agree with me, so I called an end to it. The Ifos did keep my tumors stable, and on the last scan it showed an improvement. I will have a CT scan next week to see where I am now, after the Taxotere. Now we will try to move on to Avastin, although it is not approved for my Uterine MMMT. The insurance co had approved it for once, so hoping they will approve again. I was Stage 3C2 at dx, and recurred within 6 months after first line chemo of Carbo/Paclitaxel.
October 19, 2018 at 8:32 AM #7587annParticipant
Thank you for this information! I have not tried ifosfamide yet.
November 8, 2018 at 10:57 PM #7691denneParticipant
Thanks Brenda and Kathy,
Its so comforting to get responses from you … a life line really.
I get my next scan on the 15th and here goes the anxiety again. i expect many of us manage to live well in between those dreaded scans!
My “new normal” ( Who came up with that one?) is very manageable and I feel well after the first week. My hemoglobin and white count continue to be acceptable but are slowly trending downward. i don’t really know what constitutes bone marrow suppresion. Any info on that?
My doctor has mentioned lowering the dose or placing a little more time between the chemo…don’t know how to feel about that.
I also have hope with Avastin and cytosine.
Kathy, did Diane have IV cytosine and was it weekly?
Brenda, were side effects from IFEX too difficult or did you show signs of bone marrow suppression ? This had to be a difficult decision. I am taking only ibex and mesma at this time so far with good results.
Please write back as you can. I feel that we understand so much more for each other than others may and communication is helpful to us all!!
so sincerely… Linda Denne
November 9, 2018 at 3:40 PM #7693Brenda RParticipant
No, it was the Taxotere that did me in this time. I was in La La land for about 3 days with it (and the Ifex). My scan was good. No sign of any new disease and 1 “site” is stable. Oncologists says it’s a great scan, and she’s encouraged. I started Avastin. No side effects so far and blood pressure is under control.
November 9, 2018 at 5:24 PM #7694
Thanks for sharing your good news! It’s wonderful to hear that things are under control and that your oncologist is pleased with your response to the meds. So good to hear that you were able to start Avastin!
Keep us posted!
November 9, 2018 at 5:44 PM #7696
This group understands all too well the anxiety and the “new normal.”
A little followup on your questions/concerns…
Cytoxan (cyclophosphamide) is an oral medication, which makes taking it convenient. It’s taken daily. It’s been around for a long time – I remember it from my early days in nursing.
Bone marrow suppression (sometimes called bone marrow depression) is a side effect of Ifosfamide, Cytoxan and many other chemotherapeutic agents. If the blood count is too low, your physician will use your lab results (CBC and diff, platelet count) to review the degree of bone marrow suppression and make a decision about whether to reduce the dose of the medication and/or spread the doses farther apart. It’s a decision that can disappoint you – you want the most drug you can get! – but if the counts drop too low, you are at risk for complications. Facilities have guidelines in place to help determine how to direct care, when to replace blood cells, and so on. It’s a balancing act.
This article does a nice job of explaining what the physician will assess – red blood cell count, white blood cell count (in particular, the neutrophils) and platelet count.
There are side effects from low blood counts – low red blood cell count causes anemia, low white cell count can lead to infection and low platelet count can lead to bleeding.
I hope this helps.
Best to you!
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