I always share news about ErSO with you and give you hope Now I need your experience and help to get some comfort
Please share and help. I was diagnosed in 2019 with the Mets in bones. I was on ibrance and exemestane for a year. After that the pet ct started showing the progression to the bones. I have been on 4 lines of treatments (ibrance with examestane, ibrance with Faslodex, Piqray with Faslodex that caused me severe allergy and tamoxifen) My last Petct showed a wide progression to the bones and new met in liver. The doctor put me on Xeloda I took 2000 mg a day for two weeks Now is my week off The bloodwork that I took today showed a low hemoglobin 7.9 It has been falling last three months from 8.9 yo 8.5 to 7.9 today, low platelet count from being normal last month 113 to 70 this month and elevated liver counts ast 109, alt 128 and alkaline phosphates 187 The calcium is also low, thus the doctor cancelled x geva and put me on one more week off Xeloda. The doctor ordered a blood transfusion and would like to repeat bloodwork in a week. Did anyone experience a similar situation?
I would appreciate if you share your experience and help me go through this
Best,
Marina
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Hello Marina. I have Mets to lungs, brain, bones and liver. I was on Ibrance and Faslodex but after 20 cycles, I had progression from just lung Mets to the brain and bones. I had WBRT for the brain Mets and Xeloda for the lung and bone Mets. After a year on Xeloda, my PET scan showed stable lung, brain and bone Mets but progression to liver. So my oncologist decided to add Navelbine oral to the Xeloda. My Xeloda was 500mg 3x day no rest. I did that for over a year. Then he added Navelbine 20 mg 2 x day MWF. After 2 months, my bilirubin shot up to 2.2 and RBC slightly below normal. My liver enzymes were in the normal range. So my oncologist has now cut my Navelbine dose by 50% and my Xeloda is now down to twice daily. Blood test in 4 weeks to see if there is improvement in my bilirubin. Sandra kindly suggested drinking coffee to improve liver function. I have started drinking coffee instead of tea.
Hi,Thank you very much fir your detailed response and for sharing. My problem is the liver enzymes. They are elevated 4 times. The MO gave me the second week to rest and repeat the blood work. I hope for the best. I never heard that coffee is good for liver but I do drink coffee. Good luck to you and all of us!!!
I did once hear about coffee enemas to stimulate the liver! Think I might have tried a DIY one many years ago. Can’t vouch for them though. You would have to research it x
I just started on Xeloda, on day 2 now, after going through some of the same lines of treatment you mention. I am on 4000mg (2000 mg every morning and evening) with 7 days on and 7 days off. I realized I don't even know how often to have my blood checked so your question has made me think I have some questions to ask.
I hope you see great improvements in your bilirubin.
Hi Esther. How are you tolerating xeloda. I started on a lower dose and my liver function was elevated. Today they took blood again and alkaline phosphates, one of the enzymes, jumped up again. How are yours?Marina
I am on the same regimen as you. I take 1000mg twice a day - I was given freedom by my onc to take the pills as often as I could over the 14 day '0n' period. I was only managing 9 days without strong symptoms when I took it every day. I tried 5 days on (2 days off- or 3 if still have symptoms) then another 5 days on. Then the official 7 days off. This way I manage to take it for 10 or 11 days in the 14 day window. I have done 6 rounds and my last CT scan showed static mets in liver and bones for the first time in 2 years of treatment. My platelets and bloods are going back up on the slightly lower dose and side effects are very small by comparison to loading my body over 14 days. Take the long view.. some people find this drug effective over much longer than the 6 month average - one person on this site reported using it for 8 years! The dosage was calculated in trials to mitigate side effects, not measured for efficacy.. Some people are on an even lower dose than me and it is still working. I have also taken a 14 day break when side effects got bad. Also try iron supplements - Spatone is an easy one to take with none of the usual side effects.
Hi,Thank you so much for a very detailed message and for sharing. It’s encouraging that you may do well on a lower dose. May ask you What exactly was wrong with your bloodwork? Were your liver enzymes normal? What were your side effects?
symptoms - hand and foot syndrome - cured with lower dose and moisturiser, clingfilm and sox at night. Stomach pain at the beginning.. got better at a lower dose. Liver enzymes lower than normal but still good enough. Platelets and red cells going down..but within tolerance.. got better on lower dose, but also moves about quite a bit depending on how long I have been on my week off before I have the blood test.. later in the week off - better results. I resist additional treatments in favour of adapting the drug regimen to suit me. I take vit B every day - to help with folates.. good for bloods. Also I make my own kefir and take it everyday to help with stomach microbiome.
I make mine with pasteurised organic milk.. I think it is still good. Its easy to make if you buy the live 'seed' and much cheaper.. take a look on youtube.. there are lots of converts who make it
Hi queeneee,How are your liver enzymes? They took bloodwork again today and two of them ast and alt went slightly down. I was on a two week off break. My doctor gave me an additional weak off. But one count alkaline phosphate jumped very high up.
Hi Sandra,I appreciate your long and detailed message a lot. We already communicated with you in regards to ERSO and other topics. I like your long and very scientific responses. Thank you again for replying to my personal issues. The labs were done the 6th day of the week off.
The LDH has never been taken. I looked through my report and did not find it. XGeva has been given to me monthly and up until the last labs my calcium was normal. I can certainly mention to my oncologist about the three months study. I know the lady who is going to Memorial Sloan Kettering Cancer Center in NY who is getting it once in three months. I have wide spread bone mets that are getting worse and worse with every scan. Maybe this is why she decided to give it to me monthly. Yesterday when my calcium was lower than normal they took me off. I do not know for how long. I have been taking 600 mgs of calcium supplement and the MO recommended to double that dose. How often do you take PetCTs?
Here in the States the protocol is every three months. The normal range for platelets here is
140-400 10*3/Ul It is my first time that they went so low. I am getting a blood transfusion tomorrow. Then on Wednesday I am supposed to take another bloodwork to compare. Then my MO will decide what to do with Xeloda. I read in another reply that people do equally well on a lower dose of Xeloda. I hope my blood test will be better after the second half of the week. I read in someone's message that you suggested to drink coffee to improve the liver function. Honestly I thought that I should quit drinking coffee to improve liver function and drink a chamomile tea instead. Did you read some research about it?
Thank you again for your time, knowledge and support.
Hi SandraI too am interested in learning more about the study and coffee. You are such a wealth of information and I so appreciate reading what you write as I always learn something new. Thank you for sharing!
Hahaha! I actually HATE everything about coffee--literally never had coffee in my life and it was not a religious thing. I find the scent offensive--I know that is odd. Half of my family loves it and the other half not.
Hi Sandra,Thank you so much for your reply and suggestions. I try to eat all food groups but I do not have the best appetite. Also I started experiencing anxiety and some depression after the disease progressed. I was diagnosed back in 2019 with the mbc after 9 years in remission. I gave been on ibrance with exemestane for one year until the disease progressed. Since that time I have been on 4 more lines of treatments and all pets showed a progression to the new bones. The last one showed a progression to the liver. I became very upset. I have been taking antidepressants as well. It’s very difficult for me to live with this disease and enjoy life. When I found the info about ErSO ad a potential cure I started being less depressed. I know your opinion about it but I still believe that with such exceptional lab results 99/100 % it may do well on humans. I already shared with you that I consult with the pharmacology professor who invented fx68 and he believes that ErSO is a very promising compound and that nothing like this has ever been invented. It gives me hope and strength. I also read the study you posted about ibrance that it can be repeated after some breaks. It is also very encouraging. I took it 2019-2020 and did well on it until it stopped working. My MO said if we stop progression with some drug then I can go back to the old one or another drug from that group eg Verzanio. I am very scared of IV chemo.
What Mets do you have and what treatment are you receiving and for how long?
Thanks again for sharing your knowledge and for such needed support. I am in the hospital now getting the transfusion. My doctor asked me if I am ok to get a bone marrow biopsy. I do not know why she asked me about it.
Sandra,You are very, very knowledgeable and helpful. I do not understand about bone marrow biopsy. Would it change the treatment if some cancer cells are found there? I hope not.
I understand that positive and happy people have better outcomes. I was ok when I was taking ibrance as my first line of treatment. Then when it stopped working, I lost a joy of life. I am trying to help myself and hoping in ErSO as a potential cure, consulting with the experts in the field and giving people hope gives me strength as well.
Good luck to you!!! I hope you will stay on ibrance for a long time. This is what I wanted but…
Yes, I also try not to get crazy about markers. They seemed to be valuable with treatment as they were knocked in half each month for first six months. My high ALP has been 442, now down to 259. My low was in 2018 at 44. Now they hover around mid 200 to 300s. But I have ben on taxol treatment for 8 months, sooo.My ALT high has been 105 but that was only two weeks and now stay in mid 60's--not horrendous. My AST, Nov 2018 was 14 now hovers around mid to high 50's also not too horrible. I am currently on taxol and xgeva. Any thoughts? i have been feeling really good the past6 months-today I have no energy--looking forward to tomorrow and more energy to feel more like Bonnie!
Hi Bonnie,Thanks for sharing. You have good liver counts now. I am glad that they normalized. Hope mine will go down as well.
Good luck! I hope tomorrow will be a better day for you. I am down today as well. I just came back home after a blood transfusion due to my low hemoglobin and platelets.
I live in USA I am getting my treatment in Florida now. Before I lived and was treated in New York. I meant that your liver counts were close to normal almost there. I had a blood transfusion because of my hemoglobin was dropping for the past three months and also platelets. I am back home feeling tired. Hope to be better by tomorrow.
I live outside of Washington DC in Maryland and am treated at Lombardi Georgetown. Where in Florida do you live? Yes, i feel relatively good about my ALT and AST, they are not horrible.
no, I was not. ibrance, faslodex and letrozole. Original BC in 1998 with bilateral/tram, etc. etc. Went from there to xgeva and taxol at the same time. I am working on new schedules for IV and hope to convince doctor to let me do xgeva every three months. I am not sure why I have to dance through this.
No I am on Xeloda now. My liver met showed the last Petct a month ago. My liver enzymes got elevated after I started Xeloda. Did your oncologist tell you that after taxol you may go back to targeted therapy and hormonal one. I know that many oncologists go back to the old treatments after chemo gets disease under control. Best
Hi Bonnie,It’s Marina again. I saw you in the newly organized ErSO activism group on Facebook. Today my blood work was done again. After two weeks off xeloda my ast and alt were slightly down but alp jumped from 187 to 301. Do you remember when your alp were high. What was the reason. Also where are your Mets.
A LP is mainly an indicator for bone mets. Mine stays in high 200's now and that doesn't really alarm me anymore. I am mostly concerned about my organs, without those we can't live.
Also, my liver has had two measurable tumors that have shrunk with taxol and stayed smaller but much of my liver is necrotic. Although, the liver has the amazing ability to regenerate, unlike other organs, so I am hopeful that I can maintain where it is and maybe get a bit better going forward. I have been upset for past 24 hours as my BC tumor markers are going up again and now I have to schedule scans a bit earlier than hoping to.
Hi Bonnie. Thank you very much for sharing. I thought that Alp was also a liver enzyme. It jumped within a week very high. Sorry for your tumor markers going up. Sometimes it’s not the indicator of the tumor progression. People were saying that tumor markets do not distinguish between active and dead cancer cells. I never knew that. Maybe this is the case. What range are they? Best,
It is considered a liver enzyme because it also involves the liver but mostly indicative of bone. I just stopped freaking out about it as my bone mets are my bone mets and I'm okay with them--at this point!! This too may change!!
Hi Sandra,You were the first person to tell me about LDH that has never been taken. Today I got the results that were taken it for the first time. Here we go. LDH
Your Value
505 U/L
Standard Range
135 - 214 U/L
Flag
H
I understand that it’s 2.5 of the normal top range.
I know that the Mets are active
What was your experience with this reading?
I did not get the markers yet but I am sure they will be elevated as well.
Good morning Sandra,I sent you a message yesterday about my ldh. It was taking for the first time and it’s 2.5 higher than normal. Is it very alarming?
Please respond when you have a chance. Thank you very much
Hi Sandra,Thank you so much for your very detailed explanation. I was just surprised that this count has never been taken but once you mentioned about it I saw it. It was reported as a separate reading. Obviously my oncologist added it just recently. Maybe she did it because my red bc and hemoglobin as well as platelets were going down. She was also talking about bone marrow biopsy. I do not know why. I will ask her next time. My markers were going up with every test but today I got the results and they went down a little bit. Still pretty high. I was on Xeloda for two weeks and now is my second week off because of the liver enzymes being elevated.
Hi Sandra, Thank you very much for your detailed explanation. I really appreciate it. I hope My oncologist will adjust the dose of Xeloda for me and my liver enzymes will get back to normal. My markers went down a little bit. It’s a good sign.
Hi Marina,I have a similar medical profile to yours. I work with a naturalpathic oncologist along with my conventional oncologist to support my nutritional needs and to manage my side effects to the meds. I cross reference all my meds and supplements for interactions/ side effects and make sure both doctors are on board with my protocol. You may consider building a "team" that included a nutritionalist/ naturopathic specialist. I have seen 2 nutritionalists within my conventional health provider system and interviewed 3 naturopathic doctors before I found my present practitioner.
I am thankful for this forum to support each other and appreciate the information you have found concerning with ErSo.
Hi Misshope,Thank you very much for your suggestions. I do take some herbs that my herbs specialist recommended. My oncologist is always concerned about supplements because it’s not known how they interact with meds.
Hope the ErSO will come around soon and saves us. The latest we got from Bayer that the updates will be coming towards the end of the year. Let’s hope
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