Neulasta troubles

[WordNerdSharron]

Hi Friends. My oncologist added Neulasta to my chemo regimen (Abraxane) because my counts have stayed high enough to have chemo on days one and eight, but then they tank, and I've had to wait a week to get the day 15 dose. It's been consistently that way since the first series. This last time he ordered Neulasta in the little box that you wear home. I had Neulasta shots during my initial round of chemo 15 years ago, but I don't recall it hitting me as hard as it has this go round. In addition to the bone pain, I've had mild tachycardia, fatigue, and nausea. We'll know day after tomorrow if it did its job. Anyone else have a similar experience? If so, how do you manage it?

PS: My nails are also getting gross again, so I've started using tea tree oil mixed with Frankincense and Myrrh oils in a carrier oil. That seems to help. I'm taking Claritin, too, which is supposed to help with the pain. Thanks in advance for any input or advice.

[blms]

The tea tree oil combo. Do you make it and put it on your nails. I have tons of essential oils and am interested how you decided this combo and how you do it.Bonnie

[WordNerdSharron in reply to blms]

Hi Bonnie. I keep some made up from a recipe I got from a friend who uses a lot of essential oils and has some sort of certification in the use of essential oils. It's about 1/2 tea tree oil, 1/4 frankincense, and 1/4 myrrh in a coconut carrier oil at a 10:1 ratio. I keep it around for all sorts of skin issues and scrapes. I also ordered some Natural Nail Treatment from Amazon via Majestic Pure Cosmeceuticals. I was going to order polybalm (recommended on Livestrong), but it was going to take several days. May order some yet.

The big thing for me is the onset of fatigue and elevated heart rate when walking or climbing stairs. This may not be related to the Neulasta, but I'm hoping it's something like that and not the cancer playing hide and seek in a new organ or something.

[blms in reply to WordNerdSharron]

Okay, I have a million essential oils here, so I am set with product. When you say 10 to 1, I assume you are saying 10 parts coconut oil. But I am a bit confused as to actually measurements. If you have time please clarify so I can make it! This is great!

[lynnhbtb]

Hi Sharon, Yes, I am also on Abraxane and Carboplatin right now and having issues with WBCs going low, but Neulasta, the on board one you wear home pumps those levels right up. No issues with nails so much. Nausea and fatigue and anemia, but it could be mostly from the Carboplatin. I've asked for every nausea drug known to man (or woman). Some help a little. I started dosing two days before my treatment with Reglan to help with nausea and I think it's helped a little. They also give me premeds prior to treatment, Aloxi, Cinvanti and Pepcid and steroid. Oh, I developed a skin allergy to the Sancuso patch, but would highly recommend you trying it. It worked for me until the skin thing and it was just localized. The company rep had never heard or seen of such a reaction, so likely not a high probability. All the best. Feel free to contact me to commiserate or if you want/need any other info. All the best. Lynn

[WordNerdSharron in reply to lynnhbtb]

Thanks, Lynn. I am not familiar with the Sancuso patch, but I may ask about it if my nausea worsens. Right now I mostly use ondansetron, the sub-lingual tabs. I usually only have to use a couple following an infusion, but this time, I used eight of the nine tabs allotted per infusion.

[lynnhbtb in reply to WordNerdSharron]

I'd keep the possibility "in your back pocket."

[BangorBelle56]

Hi there, Best for nails is polybalm. Not cheap but worth it. My nails were a mess. I changed back to ordinary Taxol as I found the more expensive Abraxane tough. I had neulasta 11 years ago with no problems. Now i have aches and painsafter it. I get the injection. Think body just re-acting to all these chemicals. You can buy Polybalm from Amazon (I dont use it for myfeet)

[WordNerdSharron in reply to BangorBelle56]

Thank you, BangorBelle. Your experience gives me more incentive to order polybalm, even if I have to wait a while to receive it. How long have you been on Abraxane or Taxol?

[BangorBelle in reply to WordNerdSharron]

Hi, I have been on weekly Taxol off and on since the beginning of June 2019, though I do get break every 20 weeks or so to let bone marrow recover. I usually have Fulvestrant then. I tried Xeloda as too but it did agree with me. Might try it again after next Fulvestrant as my daughter is hoping third time lucky for her wedding in Sept (covid cancellations) and it would be nice to have some hair. Having Brain radiotherapy at the moment to, so hope that doesn't stop hair growing back later LOL

[Partia]

I remember the new last two shots from 20 years ago. You took them every day for 10 days. And then 15 years later I got the Nuelasta and experienced horrible pain. I tend to think it's because everything's combined in that one shot. Before we measured it through 10 days... I'm not really sure but sounds plausible

[WordNerdSharron in reply to Partia]

Thank you for responding. Were the shots you took 20 years ago nupregan or neulasta? My daughter describes neulasta as making her bones feel like they were being stripped from the inside out, so I feel lucky that the pain hasn't been worse. Hope you are doing well.

[Partia in reply to WordNerdSharron]

Nupogen.

[AnnaP668]

Biotin is great for nails but it does make tumor markers go up. For that reason I stopped it but this month I'm trying using it 3 weeks, then off a week before my visit, same schedule as my Ibrance. We'll see if that works.

[WordNerdSharron]

Thanks, Anna, for the warning about biotin making tumor markers go up. I'll stay away from it for the time being and try the natural nail treatments and probably the polybalm.

[ANNIE6449]

My City of Hope oncology nurses told me NOT to take ibuprofen when I was sent home the first time with the Neulasta device. They gave me an antihistamine and I think acetaminophen to take and said that should work fine to keep the pain down. I woke up at 4am with so much intense pelvic pain my bf had to rush me (screaming) to the ER. (BTW, I generally have a VERY HIGH pain tolerance, so this was absolutely shocking to me) All they could do was give me a small dose of morphine (which I am mildly allergic to, but there was nothing else) and wait it out. The morphine took the pain from a 12 to about a 6, which made it bearable enough that I could rest. The pain had begun at exactly 13 hours after the device deployed and completely disappeared at exactly 24 hours, just as the oncologists told me it would.

When I told my tennis partner - who also happens to be a chemo nurse at a different hospital- what had happened she told me ABSOLUTELY take ibuprofen beginning just after the device deploys. She said that is what they tell ALL their Neulasta patients to do with EVERY Neulasta dose. I followed her instructions exactly with my next 3 doses and had absolutely no reaction at all to the device!! I even forgot I was wearing it!!! I passed this info on to my City of Hope oncology nurses too.

The Neulasta also did the trick and my white blood count stayed almost normal the entire 8 weeks of my chemo. (Unfortunately my red blood cell count continually went down until I needed a blood transfusion in order to safely get my last dose of chemo.)

Hope this helps.

[WordNerdSharron in reply to ANNIE6449]

Thank you, Annie!