Anyone Had hair loss with Doxil?

Cayman

Avastin giving me nose bleeds and headaches.

marilyng6789314

No hair loss with Doxil. Some nose bleeds and hoarse throat with Avastin. I asked them to cut down on the benedryl since it, the avastin and the symbicort (asthma med) seemed to contribute to the hoarse throat and dry mouth. Once I reduced benedryl and symbicort then the hoarseness went away.

Cayman

Thank you

Nose bleeds give me a headache was hoping that side effect might wear off but hasn’t.

thanks again

Judy_in_FL

I had spontaneous nose bleeds from Taxol/Carbo from hair loss everywhere that caused dry nasal membranes. Nose hair is so under-rated. My nostrils became very dry and spontaneously bled a few times a day. Lots of sneezing as well. No headaches at that point.

Have you tried using a nasal mist or applying a thin layer of vaseline to your nostrils with a q-tip? I misted in the morning, and vaseline'd morning and evening. As I recall, my nosebleeds resolved within a week or so. Headaches began as Avastin began to stop working. Perhaps a coincidencem but when we stopped Avastin, the headaches stopped. I hope yours have, Patti.

Cayman

Thank you Judy

I just restarted the Doxil and Avastin after a 5 week gap they reduced the dosages. So far so good 🤞

Judy_in_FL

That's great, Cayman! 👍 May it continue to go easy on you and full attack mode on your cancer!

When Avastin stopped working for me I chose not to go back to Doxil only because I didn't want another port installed.

I had my 2nd cycle of the new Elahere yesterday. Marker went from 46 to 17. Thus far no major issues. It requires quite an aggressive 9 day regimen of eye steroid drops and lubricating drops each cycle. There is good info on their website.

marilyng6789314

https://csn.cancer.org/discussion/comment/1709902#Comment_1709902

Judy great that you qualified for Elahere! Sending hugs and prayers that this works for you!

Judy_in_FL

Thanks, Marilyn! I began Doxil on a reduced dose when my hair had regrown to almost an inch after taxol/carbo. My doctor said I wouldn't lose hair while taking it, and I didn't.

Prayers for hairs! 🙏 xo

marilyng6789314

Judy! I totally agree!! I am on my sixth cycle (out of 9) of Doxel/Avastin. No hair loss. YAY. But, getting some side effects from the Avastin.

Judy_in_FL

https://csn.cancer.org/discussion/comment/1709915#Comment_1709915

What side effects are you experiencing from Avastin, Marilyn?

marilyng6789314

Judy,

Let's see. The initial one was extreme dry mouth/hoarseness because they like to ply you with Benadryl before the infusion and I am an asthmatic, so I take Symbicort daily. The combination of all three caused the dry mouth and hoarseness. I told them to hold the Benadryl, I stopped Symbicort and that pretty much solved that problem. I still do wake up with dry mouth from time to time.

After nine cycles of Avastin, my kidney protein is rising and I am dehydrated. The dehydration means you stop all Caffeine, and switch to 40-60oz daily of liquids. I add a hydrating solution to the 20oz cup.

Other than that, not much else. Oh, they do an echocardiogram every three months, because Avastin is hard on the heart and the kidneys.

I find that a really good Pilates class keeps the side effects at bay.

marilyng6789314

Judy,

Oh, and I seem to have a UTI every other month.

Judy_in_FL

Hey Marilyn. Dang, that's tough, girl. Impressive troubleshooting on the Benadryl/Symbicort situation though. My mouth is only dry when I take a muscle relaxer before bed. Have you tried any of the dry mouth sprays or squeeze tubes similar to those they load you up with at the hospital? They seem to help.

I can relate on the kidney protein, not from Avastin but from my first Elahere cycle. It's scary not knowing what's going to happen next. I don't drink caffeine, but remember when my husband went through it. We had to have a ceremony to retire his Coke. I now will have a hydration infusion Day 6 of each 3 week cycle.

Gee, I didn't relate the UTI's to Avastin, but to not drinking enough water. Hmmm. They occurred frequently during the last several cycles of Avastin when it began to fail. I learned to feel one coming on, pounded a few glasses of water and popped a few cranberry UTI pills and it was gone in a few hours. I also take a cranberry health pill every other day. CVS brand, nothing fancy. They really help me .

I only went for one Echo and that was a year ago. (oops) My heartbeat has always been regular though, thank goodness.

I'm looking for a gym buddy but I'm still waiting for someone to take me seriously. Pilates sounds fun.

marilyng6789314

Judy,

Yep I do have those dry mouth sprays that work pretty well. I think that either the Avastin or Doxil makes you dehydrated and may cause those UTI's, but interesting observation with the cranberry pills - I will try that. I have increased my daily intake of water and added one of those hydration packets to it.

Question - how do you know when Avastin starts to fail?

Judy_in_FL

Marilyn, my increasing tumor markers... 13... 18... 24... 51... were the indicators. PT scan and MRI confirmed a small metastasis had formed. For context, I had 9 cycles of Avastin alone after 9 cycles with Taxol/Carbo and Doxil.

Thanks for mentioning the hydration packets. I forgot I have some here.

marilyng6789314

Judy - the hydration packets are vile especially those with artificial sweeteners. I found "DripDrop" works really well and has the least offensive taste. "B4" is the other one.

Let's see, on Carboplatin\Taxol my CA125 went from 450 down to 19 after surgery and then started climbing. When I finally convinced that doctor to do a CTScan, we found 2 small cysts that weren't there before.

Changed doctors, next tried three cycles of: Avastin/Carboplatin and my CA125 stayed at 105. But cysts reduced in size slightly.

Changed doctors again, convinced them to take out the two cysts, but the above doctor (who was the surgeon) only took out one, saying he could not "reach" the other one. But, on the way there he observed small volume Peritoneal carcinomatosis. Sigh. This is the guy that was looking at me like I was a dead woman walking last year. And then again after this procedure.

After that, started Avastin\Doxil and CA125 dropped from 238 to 67.

Now, after six cycles, it is rising again - 86 to 124.

But CT scan shows only the one cyst. Go figure.

Judy_in_FL

Marilyn, thanks for the hydration tips!

What was the result of the biopsy of the cyst that was removed?

Praying that this all gets sorted for you! xo

marilyng6789314

Judy,

The biopsy was malignant. Thanks! I am headed to the Moffitt center in Tampa in November for another opinion and treatment options.

Judy_in_FL

Marilyn, I asked about biopsy results because after taxol/carbo mine indicated that some cells had become resistant to that treatment. Sending prayers and positive thoughts your way! xo

marilyng6789314

Judy, yeah, those cysts were resistant to both Carbo/Docetaxol. I did three cycles of Avastin/Carbo but the CA125 stayed at 95 and the cysts reduced in size a tiny bit. Now doing Avastin/Doxil, and CA125 is rising and the one cyst left is slightly smaller. So something is churning away or the Doxil just works slower.

Back at you with the prayers and positive thoughts!

Judy_in_FL

https://csn.cancer.org/discussion/comment/1710039#Comment_1710039

Hi Marilyn, how did you do at Moffitt in Tampa last month? xo