Daughter with De Novo DX in July

MEMAStrong

Good Day Everyone,

I am returning to BC.Org after several yrs away, I was DX in 2006 with ILC, treatment Bilat etc and have been NED since 2009. I come back today for my 39 year old daughter who was just been DX with with IV, mets to bone, liver, spleen , lung. It was quite a ride to even get the BC DX as she presented with sever back pain after tuffing it out for several months, thinking she just pinched a nerve, CT's and MRI's showed many, many areas of concern, her first trip to ER she was admitted because of the pain and findings on the imaging , she spenbt over a week in the hospital , 2 biopsies attempted on a large mass on her T5, both failed without enough to confim DX, although the oncologist at this 1st hospital was 99..99999% sure she had CA. Fast forward sent home to reschedule another biopsy, in the meantime she sneezes and that was that, basicaly her spine collapsed and she was in a 14 hour surgery for T5 corpectomy with T2-T8 instrumented fusion, at this point the surgeon is able to get a good part of the T5 tumor for biopsy and a week later we have an actual DX, Ductual and again spread to Bones, her spine/hips are covered in lectic lesions , oncologist refered to her liver and spleen when showing us PET results as it looks like fireworks are going off in both. She had 5 days of rads after surgery , about 3 weeks after. As far as the surgery she is doing great, and even is finally having "some" pain relief from that. She has been taking Tomaxifen since mid August , she is one her first final week ofibrance and has Zometa infusion monthly. (2 thus far) .

She has started to feel VERY nauses and even vomiting I see Ibrance can cause both, is that anyones experience? I come seeking guidence as I found this site very helpful when I was on my journey. My daughter has 3 children, and a significent other. She is overwhelmed with all this, we all are. We know the prognosis is not good, even with the studies on the ibrance , but her mets is so wide spread she often asks is "all this worht it" esp these past days of feeling so sick. I honestly don't know what to tell her.

B-A-P

that’s so hard I’m so sorry to hear about your daughter. I just started ibrance two weeks ago and my worst symptom is extra gas and bowel movements. It can cause nausea but it should taper off eventually. Has she been given any anti emetics ? Maxaran and zofran can be really effective especially if she can take it before the nausea takes hold. It is harder to control when already nauseated.
I would bring it up with the oncologist as well and they can lower the dose of the ibrance and see if she can tolerate that better. I’m on 100mg and the starting dose is usually 125.

illimae

I got no relief from the usual nausea meds, it took a very old antihistamine, also used for motion sickness to eliminate the problem. It’s called Promethazine and it’s been magic for me. Good luck to you all.

jhl

MEMAStrong,

I am so sorry for your daughter's struggles. She appears to have widespread disease with significant side effects. She must be on some oral pain medication, right? That can cause lots of nausea as well. What have they given her so far? Zofran (ondansetron), Phenergan (promethazine), Compazine (prochlorperazine). Ativan is also used for nausea associated with treatment. I am sure given her back surgery, her doctors do not want her bending over with vomiting. Is she or her spouse in touch with her MO? He/she would be the one to give antiemetic options.

I wish you & her all the best,

Jane

(Reposted from the other thread)

booksnbikes

So sorry to hear your daughter is going through this. My mom is just a couple weeks behind your daughter, diagnosed Stage IV de novo in August. She also has extensive mets and is on her 2nd cycle of Ibrance (MO has already reduced her dose from 125mg to 100mg, due to her WBC not bouncing back fast enough after her first cycle).

My mom says it feels like she is stuck in a revolving door of side effects, including pretty extreme nausea. The thing that has helped her the most is being super, super regimented about taking her anti-nausea meds, alternating 2 different anti-emetics every 3-4 hours on the dot . She is using Reglan, Zofran, and Ativan (the liquid version- easier to take when nauseated). She takes the first two daily, alternating them every 3-4 hours, and the Ativan when she's feeling particularly pukey (i.e. when her gag reflex kicks in) or has vomited within the last 24 hours. We've learned the hard way that she can't get even the tiniest bit lax about it without the vomiting coming back with a vengeance. Her palliative care NP also prescribed Olanzapine as a last resort (in addition to being an anti-emetic it's also an anti-psychotic used to treat schizophrenia, apparently). She hasn't had to use that yet though.

A friend also introduced me to something called the "Peppermint Roll": You take a washcloth, put a couple drops of peppermint essential oil on it, wrap it around an ice pack, and then put it behind your neck (works best with a soft ice pack or back of peas). Apparently this sort of distracts the brain from the nausea for a bit. It's helped my mom when a wave of nausea hits.

Wishing your daughter some relief and you some peace.

Edited to add: Compazine (which my mom was on for a bit and which did help) also comes in suppositories, which is helpful when someone can't keep pills down.

MEMAStrong

Oh Gosh so sorry to hear about your Mom, devestating news to hear at any age. My daughter is currently taking Oral Ondansetron 4MG for the nausea and is now drinking Pepto almost every 30 minutes, she says the script causes constipation, but then so does the percocet, so the combo of the 2 not good. Has your Moms Dr given any opinion on how well she will do with the ibrance and the fact that hte CA is so widespread, (I know that is a horrible question.) I mean I know how terrible it is with the amount of liver/spleen involvement my daughter has. I remain hopeful and pray but such a REALITY .

booksnbikes

Yes, definitely awful news to get any time. I wonder if your daughter/ you could talk to her doctor about adding in an additional prescription anti-nausea, like compazine and/or Ativan? Waiting 6-8 hours between doses of Zofran (Ondansetron) is an awful long time to wait when your are miserable! This is essentially the protocol my mom's palliative care team was having her follow for awhile: https://healthonline.washington.edu/sites/default/.. FYI, it can take a couple of doses for the medicines to really start to kick-in. I definitely would consider Ativan, even if your daughter doesn't have "anxiety" per say about getting sick. I'm not quite sure how it works, but it really is like an off-switch for my mom once vomiting has started. Oh, and is your daughter getting IV hydration regularly? My mom has been going to the infusion center once a week, and though the trip tuckers her out, the added nutrition and fluids really help!

Also, if your daughter is constipated, that can make the nausea worse (though I believe this is a common side effect of Zofran). Does she have any medicine to address that? Dulcolax and glycerine suppositories have helped my mom.

As far as the Ibrance, my mom's doctor said that she does expect it to work on the mets (for some time at least, since all of these drugs eventually stop working). At the start of treatment, she said Ibrance could take awhile to start working, but she expected that my mom would start to notice a change in her cancer-related symptoms after about 3 months (if we can just get over the medication-related symptoms! Ugh!). My mom has lung mets, and we actually started to see a resolution in those symptoms almost immediately, which surprised even her doctor! Haven't had a follow-up PET scan yet but we will see what that shows in a few weeks.

Even with the extensive mets, my mom's doctor did not consider her to be "in crisis," which is why she started with the Ibrance. She said if her patients are having immediately life threatening symptoms from their cancer, she will start them off with IV chemo, but she didn't feel my mom was there yet. I have also heard of other doctors giving patients a short course of IV chemo to "kick start" treatment before starting Ibrance (not sure how common this is). Of course, that comes with its own set of challenges, especially if someone is already very sick.

There's so much to try and navigate as a patient or caregiver during this time... it's so hard. Fingers and toes crossed for your daughter and my mom that they are both able to stick with treatment and start to feel better!

MEMAStrong

We have an Onco appointment Monday again, other than the Zometa monthly, the 5 Rads she had a few weeks after surgery, now on Tamoxifen & Ibrance , the pain/nausea meds she is doing/getting no other form of treatment. Her Onco said with the amount of widespread disease she has The Ibrance was the best way to go, to hopefully slow any further spread, I forget now what he was going to give her to throw her into full menopause rather than the Tamoxifen, but decided not to do that because she didn't want and more SE's than she already has, she is still in recovery from the surgery , just a mixed horrible bag. I will look at your Moms treatment plan and see how it might/might-not be helpful. My daughters mets is in bones/spine, lungs, liver & spleen . Her liver and spleen are covered in lesions, when we saw the PET we were dumbfounded , there was basically no NORMAL areas, although most of the lesions are small they are covering both .

booksnbikes

Gosh, how scary to get those PET scan results. I'm sorry for you and her. It sounds like your daughter has a lot going on all at once, between the cancer and recovering from treatments/surgery. Hopefully her oncologist will have some more ideas to help make her more comfortable right now, while the treatment is just starting to work. Does her cancer center have a palliative care team? My mom's cancer center calls it supportive care/ symptom management. Since being enrolled in the program, we have a nurse practitioner, social worker, and nurse who all come do home visits, and someone we can call 24/7 with questions. Their entire goal is managing my mom's SEs/symptoms, and they have really been a godsend.

B-A-P

memastrong- last December I had more Mets on my liver than they could count. My chemo resolved it . Unfortunately about 10 weeks after chemo ended it came back aggressively again somehow. They’re all pretty dumbfounded about it. I was supposed to start IV chemo again and got one dose in but had other complications. So now im on ibrance and fluvestrant. And the advice from a lot of the ladies on the ibrance thread had mentioned that you can use with extensive Mets .

Hopefully that helps and I hope she gets some relief from the nausea soon. That’s so hard to deals with.

jhl

MEMA,

Can I offer some practical advice to ask her MO about? I don't feel your daughter should be taking the Pepto Bismol, in fact I don't think anyone should take it honestly. She can get salicylate toxicity easily due to it being bismuth subsalicylate. That puts a tremendous load on the kidneys. It is also mildly antibacterial in the gut & you don't want to completely knock out her microbiome which can lead to a C.difficile infection. In its place, she can use a regular antacid like Maalox or Mylanta. In fact, the magnesium content of these might help with the constipation of the Zofran. As far as Zofran, she should probably go up on the dose. When someone gets IV chemo, it is not uncommon to receive 16 mg of Zofran. In her situation, I don't think its unreasonable to use 8mg rather than 4. I agree, alternating Zofran with another different type like Compazine or Phenergan is a smart solution. I also think you should consider a regular Ativan with additional breakthrough doses when vomiting begins. You can place the Ativan between her teeth & cheek or under tongue and it will absorb if she can't tolerate swallowing. Since there is so much liver involvement, take note of how much Percocet she is taking in a 24 hour period. Each tablet contains 325mg acetaminophen so 12 tablets per day will put her at the 4G max. You might want to ask her MO about having a pain reliever that does not include acetaminophen. If she is nauseous with the Percocet, she might tolerate an opioid patch with oral breakthrough pain medication as needed.

I wish you both the very best,

Jane

booksnbikes

Hi Mema,

I hope you and your daughter are doing well. My mom has been improving a lot l the past month or so, and I wanted to share two discoveries we made, in case your daughter is still having trouble with nausea and these changes right help her too:

1. Steroids (dexamethasone, specifically): I think it's more common to give these with IV chemo than a drug like Ibrance, but my mom's palliative care doctor figured it was worth a shot and wow, it's the closest thing to a miracle drug I've ever seen! All of a sudden the nausea abated and my mom could eat more than she had been able to in months (even before her diagnosis). She was on a 7-day course about a month ago, so the steroids are no longer in her system but she continues to be OK in terms of both nausea and appetite.
2. Ibrance capsules (as opposed to tablets): I got this idea from elsewhere on these boards, but essentially, some people who had really bad GI side effects from Ibrance tablets found that they could tolerate the capsules better. I brought this up to my mom's MO who agreed that it was worth trying, and it does seem to have made a difference. FYI, the doctor had to write "capsule only" on the script, otherwise the pharmacy would send tablets (they cost more than the capsules, so, surprise, surprise, that's what Pfizer prefers people use).

These little tweaks seem to have helped my mom a lot, so I thought I'd share in case they might help your daughter too.