Anyone Had hair loss with Doxil?

Thank you for asking. Very impressed with the center. Basically what they said is that the current scans are not showing any new tumors or spots even though my CA125 is rising. They recommended continuing on the same protocol and doing a PET scan 3 months after the last CT scan.

JUst did that, and except for the one cyst that is shrinking, the PET scan was clear. My CA125 went from 150 to 250 though, but everyone seems to think that it is a false reading since the scans are clear and I am asymptomatic.

So, the nice thing is that once you meet with them, they grab all your scans and tests and a team reviews everything before your meeting for your second opinion. After that, you can schedule virtual meetings to review new scans, etc.

The nearby Hampton Inns have shuttles to all the Moffitt centers, so I did see a lot of people who fly/drive in for their treatment, stay at the Hampton Inn and then go home.

They also will coordinate with my current doctor as needed to provide advice. But both them and my current doctor are in agreement - use the current protocol until it stops working and keep repeating the PET scan every three months.

How are you doing?

Such great news... and I suspect you may have found your new team. I'm so happy for you! I did a little research and was surprised at the variety of medical issues that may result in an elevated CA125. Stress, too.

I'm doing very well, thank you. I've had four Elahere infusions to date and am relieved that no eye issues have arisen from the treatments. The peripheral neuropathy in my feet is a little worse, but still only tingly and tight feeling, without pain. It could be my fault because I forgot to bring my cold socks to my first treatment. My CA 125 is currently 9.9.

Thank you! 😊 Sorry you were unable to qualify for Elahere.

I think my neuropathy came from Doxil, but not sure. I wore cold socks through Taxol/Carbo, and on my third round of Doxil I didn't wear them and it started a week or so later. Mild but noticeable. Then I forgot to bring my cold socks to my first Elahere cycle; a few weeks later it worsened. I'm not complaining, because there is no pain, but it is a distraction. I don't think mine will go away either. Is yours painful?

My doctor suggested apha lipoic acid for the neuropathy which I had been taking and ran out. I just watched a you tube videos by a pair of chriopractors, and a doctor who had cancer who treated her neuropathy with a cream and vitamin regimen. She no longer has neuropathy. I'm doing the exercises, but will talk to my doctor before embarking on a vitamin regimen.

'Hope you are enjoying the holidays, Marilyn!! Thank you for your encouragement, my friend. xo

Sorry for the delayed reply.

I've never heard of foot drop! You are working it out brilliantly... kudos!

When I was doing carbo/taxol I don't think I slept the first two nights after the infusion. I was bouncing off the walls. The pain and discomfort I experienced was from the Neulasta injection given the day after chemo. I began feeling the effects of the histamine release in my joints a few days later, which lasted 4-5 days each cycle.

I just ordered more alpha lipoic acid for my neuropathy and am looking into Helichrysum oil for it. But it will have to wait as it has been all about the holidays.

Hi Marilyn,

Happy New Year! I'm usually notified of your responses, but somehow missed this one. I hope you felt great and had a wonderful time during the holidays!

I had my first Reclast infusion in May as well, and just saw this on Drugs.com: "After treatment with Reclast, BMD increased by 11% from baseline after one year of treatment and by 20.7% from baseline after two years of treatment." I found that to be encouraging.

Thank you for the tip about Zarxio to boost blood counts should a future need arise. After the first two injections, Claritin was suggested, and it did help. I took it for 5 days beginning 2 days prior to Neulasta.

For the neuropathy in my feet, my doc said she didn't want me taking Gabapentin while on Elahere because it also could cause blurry vision. She wrote a scrip for Amitriptyline which is an anti-depressant that has shown some success with neuropathy. I'm taking 30 mg at 8pm each evening and it does dry my eyes and mouth, but not a big deal. 3 more drops a day added to the already about 250 I already do for Elahere and glaucoma 😬, and some sour lemon drops or a dry mouth spray. I did buy the helichrysum oil to mix with a carrier oil to rub it into my ankles and feet bottoms. I've heard the h. cream you can purchase over the counter contains a very small amount, so I'm experimenting. It has a light floral scent, feels so nice being massaged in, and makes my skin silky smooth. I'm also moving from a B-complex to straight B2, B6 & B12, now looking into the right quantities. I'm hoping to see some progress in the coming months. If not, I'm going to try accupuncture. (Have you ever?)

I like how you're so in-tune with your meds and how they interact. Now that you mention it, I don't think I need Benadryl because it simply does nothing for me. I can think of something that would, but rather doubt they would infuse it into me. 😉 Today my CA 125 again increased. From a low of 9.9 to 10.2 and now 12.0. Not concerning at this point.

It was so nice to hear from you! Keep the faith, my fellow Warrior Goddess! 💗

P.S. I'm starting an hour of IV hydration up again, 5-7 days into each cycle.

I'm sorry you are going through so much at once. Your local pharmacist may be able to assist you if they have your prescription records or check at fda.gov/drugs or medlineplus.gov. Stay positive, and I hope you will get to the bottom of this quickly where your mojo will be waiting for you.

I'm across the State from you. Perhaps a heated wrap or blanket will make you more comfy while you work things through.

Re: hydration, I can only guess that you are getting more of the restorative vitamins and minerals then I get in one hour, or your drip is going in more slowly.

Sending prayers, good vibes and best wishes. xo

Hi Marilyn,

Happy New Year! I'm usually notified of your responses, but somehow missed this one. I hope you felt great and had a wonderful time during the holidays!

I had my first Reclast infusion in May as well, and just saw this on Drugs.com: "After treatment with Reclast, BMD increased by 11% from baseline after one year of treatment and by 20.7% from baseline after two years of treatment." I found that to be encouraging.

Thank you for the tip about Zarxio to boost blood counts should a future need arise. After the first two injections, Claritin was suggested, and it did help. I took it for 5 days beginning 2 days prior to Neulasta.

For the neuropathy in my feet, my doc said she didn't want me taking Gabapentin while on Elahere because it also could cause blurry vision. She wrote a scrip for Amitriptyline which is an anti-depressant that has shown some success with neuropathy. I'm taking 30 mg at 8pm each evening and it does dry my eyes and mouth, but not a big deal. 3 more drops a day added to the already about 250 I already do for Elahere and glaucoma 😬, and some sour lemon drops or a dry mouth spray. I did buy the helichrysum oil to mix with a carrier oil to rub it into my ankles and feet bottoms. I've heard the h. cream you can purchase over the counter contains a very small amount, so I'm experimenting. It has a light floral scent, feels so nice being massaged in, and makes my skin silky smooth. I'm also moving from a B-complex to straight B2, B6 & B12, now looking into the right quantities. I'm hoping to see some progress in the coming months. If not, I'm going to try accupuncture. (Have you ever?)

I like how you're so in-tune with your meds and how they interact. Now that you mention it, I don't think I need Benadryl because it simply does nothing for me. I can think of something that would, but rather doubt they would infuse it into me. 😉 Today my CA 125 again increased. From a low of 9.9 to 10.2 and now 12.0. Not concerning at this point.

It was so nice to hear from you! Keep the faith, my fellow Warrior Goddess! 💗

P.S. I'm starting an hour of IV hydration up again, 5-7 days into each cycle.

So, the last IV was a double bag of hydration, which is why it took so long. Gotta say, I am not seeing the advantage of the zarxio shot, my white blood counts are still low and I get to suffer for four days of reactions.

Still battling with depression and trying to get motivated to do stuff every day. Thanks for the pep talks!

HI Judy.

Well, they have suspended Avastin for now since I seem to be having all these side effects - shallow breathing, lack of appetite, chills, dry mouth, etc. But the kidney protein levels spiked so I think that may be the cause of my side effects.

They do listen to me, it's just it is a very big machine down in South Florida. Now I just have to figure out who to see to treat all these side effects, the most annoying is vertigo, the most difficult is lack of appetite.

But at least it is getting warmer!