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Worried! New bone mets and bone marrow mets

13 REPLIES 13
Member

Re: Worried! New bone mets and bone marrow mets

Hi Anniej, do you think astragalus would interfere with Palbociclib. Maybe, you want to check with your onco.

ps. I am not a medical

 

 Astragalus is one of CYP3A4 inhibitors.

https://www.ncbi.nlm.nih.gov/pubmed/23876595

and Palbociclib metabolized mainly via CYP3A

 

 

 

 

Community Champion

Re: Worried! New bone mets and bone marrow mets

Hi Fiona, I was given gsf injections to get my marrow to produce platelets. My neuts crashed to .05 and I was in a bit of a mess. I picked up after a few days so all good. X

Community Champion

Re: Worried! New bone mets and bone marrow mets

Nicky, thanks for this. So pleased you are doing well, whatever it is! My neuts used to crash which put me in hospital. I wobble along on the Palbociclib with bloods hovering around 2, which is the bottom end of normal. I’m ok so long as no one breathes on me, or 😷 coughs! I’ve tried Astralgus...yuk, and bloods still low. Kale, spinach and cabbage had no effect either , so now I’m trying Chaka tea which looks, and tastes, like ashphelt sweepings! Papaya sounds good 👍 to me. X

Member

Re: Worried! New bone mets and bone marrow mets

Hi Ladies,

 

I've now been off the Abemaciclib for 17 days and will be off it for at least another week. I had a blood transfusion on Tuesday so my red blood cells are nearly at normal levels and I feel better mentally and physically.

 

However, my platelet count continues to be too low for treatment so I've been prescribed steroids today in the hope that will help, together with something for my stomach.

 

The doctor says that they can continue the letrozole and denosumab, which will help but that having to stop the chemo element isn't great and neither is the prognosis.

 

Does anyone have a positive experience with steroids improving platelet counts?

 

I'm feeling a bit down at the moment so anyone else's good news will cheer me up.

 

Best wishes to you all.

 

Fiona

Member

Re: Worried! New bone mets and bone marrow mets

Hi Nicky

Thank you for the information it has been really helpful. I have tried lots of different fruits and was pleased to see that my platelets have increased this week from 65 to 75 however still below 100. But at least they are going in the right direction. However now my neuts are down to 1.0 but it still looks like chemo is going ahead tomorrow. It’s just a case of making sure I don’t get any infections. It’s so good to hear from people that are in a similar situation and get ideas for how to help and whether I’m doing the right thing. Chemo tomorrow and then a week of next week so hopefully my body can recover itself. Thank you again XX 

Community Champion

Re: Worried! New bone mets and bone marrow mets

Hi ladies

I just thought I’d add a bit from my experiences of bone mets. Most of the time my full blood count has been well within normal range but on couple of different treatments I’ve had over the years my platelets have been the thing that has got too low for treatment and also got the oncologist thinking about my bone marrow. 2 and a bit years ago I was due to start a clinical trial but my platelets were too low for the criteria of the trial (they were just below 100). They did pick up of their own accord but I wasn’t able to join the trial and had 8 cycles of Eribulin instead. 
In the following 2 years or so they have not caused any issues on the treatments I have been on however earlier this year I went back onto Eribulin and they were found to be low again. Too low (ie below 100) for me to have the 2nd dose of Eribulin (it’s split between day 1 and day 8 of the21 day cycle). I looked at my diet as to was there anything I was doing differently that might affect them. As it was I had started drinking tonic water (without the gin I might add!) as a refreshing drink that wasn’t too sugary tasting. The quinine in tonic water is recorded as affecting platelet count on quite a few websites so I gave it up. When I asked my oncologist about the effects of quinine on blood counts he was none the wiser by the way. My platelets still hovered around the 100 mark and I knew each cycle they might drop below it (and therefore stop me getting the 2nd part of the dose). I then looked at anything I could add to my diet to help them. I found out that papaya is a natural food that helps with platelets, again on several, unrelated websites. I started eating papaya and whether it helped or not my platelets increased. I now don’t eat the fruit as to be honest I didn’t like too much but now take the papaya enzyme supplement which I’ve got on the high street from a reputable health food chain. Whatever it’s doing, or not doing, my platelets are now around the 200 mark consistently and it’s not affecting my other blood counts (they’re done regularly enough at the moment to see any abnormalities). 
Sorry this is long winded but I wanted to explain what and why I had needed to check what things might affect my blood counts. This is not advice about what to do as I have no background in taking supplements and rarely take any so you may want to run this past your oncology team if you think it might help you.

Nicky x

Member

Re: Worried! New bone mets and bone marrow mets

Hi Ladies

 

Im having a blood test today to see how my platelets are. Hoping not to have a fight on my hands to have paclitaxol. My worry is that I have just been on a three month break and the cancer has now spread to my liver and knee bone so I’m concerned that it’s getting f out of control. I feel safe when I’m having treatment. I have asked the oncologist if I can have a platelet transfusion but he said they will need to get below 10 and platelets only stay in your body for 6 hours. Maybe I will get some more answers from the haematologist tomorrow. I will keep you updated. Take care ladies you are doing amazing xxx

Community Champion

Re: Worried! New bone mets and bone marrow mets

Hi ladies, just dipping in and out and found you. Not in the same boat but can relate to platelets story as my neuts kept crashing on Palbociclib. At one point I was .05 instead of a minimum 2.2. After a  hospital stay to get rid of a lung occlusion which the Palbociclib caused I started on it again. I have had a couple of rest periods , or holidays as I like to think of it. A bit of r& r for my poor old body! So as Fiona says, why not think of it like a rest period ? Wishing you all the very best. Annie. X

Member

Re: Worried! New bone mets and bone marrow mets

Hi Anita 

 

Well, today’s appointment didn’t go quite as hoped. My blood results are all down, in particular the platelets are down to 38. The doctor has decided to give the abemaciclib a rest for a week and then review the situation. My husband says he believed the doctor would have sent me for a transfusion but there weren’t any slots available. I’m still on the letrazole and denosumab.

 

Rather than looking at your not being given treatment as a bad thing have you considered it as just being a rest. These drugs and the side effects take a toll on our bodies and I’m hoping that I’ll feel better after  a week’s rest.

 

I hope your appointment goes well on Wednesday. I’ll let you know how my next one goes.

 

best wishes

 

Fiona

Member

Re: Worried! New bone mets and bone marrow mets

Hi Fi-B

 

yes an update after your next appointment will be great. I used to have denosumab but this has been stopped because I have ostionercrosis of the jaw and a broken jaw so they will not give me this anymore. I just feel that if they don’t give me chemo they are not treating me because I am having nothing. My platelets are still dropping regardless if they stop the treatment or not. I’m seeing a haematologist on Wednesday to see if I can get any answers from them. I will keep you updated. Xxxx

Member

Re: Worried! New bone mets and bone marrow mets

Hi Mulligans and Anita,

 

I was diagnosed last month with mets in my bone marrow, bones and lymph nodes. My platelets were 65 too, but had gone up to 69 after 2 weeks’ treatment with letrozole, Abemaciclib and Denosumab (also Adcal). Just been for another blood test today prior to appointment with the oncologist on Monday. Like you I was told that platelets should be at least 100 but the onc didn’t want to wait to start treatment. If you like I will update you after my appointment.

 

best wishes 

 

Fiona xxx

Member

Re: Worried! New bone mets and bone marrow mets

Hi Mulligans

 

I’m on paclitaxol for secondary breast cancer in the liver and bones and now in bone marrow. my platelets have dropped to 65 and keep dropping. Have you had your chemo cancelled because your platelets are below 100?  I’ve had two cancelled but have insisted on the others going ahead because I’m worried about not receiving any treatment. Would be great to hear from you. Hugs xx

Community Manager

Re: Worried! New bone mets and bone marrow mets

Hi Mulligans,

 

Sorry to see you haven't had a response yet, I'm sure someone will be along shortly to continue the conversation.

In the meantime, if you would like to speak to a clinical expert about Taxol or just for support in general, you can call them on our free helpline on 0808 800 6000 - Monday to Friday 9am to 4pm, Saturday 9am to 1pm.

 

Sending you our very best wishes,

Saskia

Digital Community Assistant 

Member

Worried! New bone mets and bone marrow mets

I thought I just had a little progression in my bones but now bone marrow has been affected. Platelets sitting at 55. Should be up at least 100. Everything else okay. 

Onc says if this weekly taxol doesn't work nothing will! Pretty scared. Have been healthy and stable for 3.5 years. Have heard taxol doesn't work for some people. Anyone else had success with it?