How are people with liver mets doing?
Comments
-
JFL. There are way too many brands, etc. Please tell me again which brand you got and how much you take.💞
0 -
Its humbling to catch up on all that goes on in our lives as I read through this thread. To read all the wisdom, support and caring gestures exchanged here is heartwarming and uplifting for all experiencing this disease. Not something that anyone in my daily life understands.
Grannax2,Nicolerod and anyone else waiting to find answers I’mpraying that this week you will receive certainty and healing with your treatment plan.
0 -
Grannax, I use Garden of Life mykind Organics ashwagandha 600mg (with 30 mg of withanolides). It also has fermented ginger and some probiotics added to aid in the body’s assimilation of the ashwaganda. That brand is the one I found that was standardized and had the appropriate amount of the active ingredient withanolides
0 -
JFL, I bought some ashwaganda in September to help with energy, but my stomach was so messed up from antibiotics that I didn't want to start taking anything that might upset it. As of a few days ago, I finally got my appetite back to normal and have been able to stop Nexium due to stomach lining irritation (I'm supposing). Have you had any problems with it upsetting your stomach?
Thanks,
Katty
It's been a couple of weeks at least since I bought mine, but I will see if it has the probiotics and ginger, too.
0 -
Katty, no I haven’t had any stomach upset from this. My only side effect is that it really boosts my energy - I would take a higher dose but think that it may give me too much energy if I do that.
0 -
JFL, I hope I have the same fabulous side effect since even SOME energy would be better than the teaspoon I now have! And I don't think I've had such a thing as *too much energy* since my son was born 38 years ago...
Thanks!
0 -
Katy, I was chuckling as I wrote about that “side effect” as no one would consider that a problem, especially here! Honestly, I feel better than I have in a few years and now have a raging appetite in addition to the energy. I was having trouble keeping my weight up the last few years but that corrected itself pretty quickly. This stuff is amazing.
0 -
I will cross post in Ringworm and Ibrance threads for those that do not frequent this thread
Ok alll I didn't get the results...yup if you can believe it..they didn't read it yet...but I have some news. The oncologist said she did look at the PET and she looked at it next to my last PET Aug 2019 she said she didn't see any new spots but was quick to follow with "I am NOT a radiologist"...hopefully she will call tomorrow with the results.
She did mention that the 3 tumors in liver that were seen back in May on MRI were not too much different now to this MRI, cannot compare Aug 2019 PET to OCT 2019 MRI you have to compare PET to PET and MRI to MRI. However we still have a new very tiny tumor .6cm so either this grew after May...or was not seen on MRI in May. In addition the MRI had picked up the met that on the PET in AUG was "almost completely resolved" in the sacrum..I KNEW this one was back because I have been for the last 3 weeks having pain there again.
We talked about Ibrance/Let/Faslodex not working...unfortunately there is no test to see which one of those failed. She wasn't too familiar with doing like Chemo or something and then going back to those kinds (I/L/Faslodex) of drugs again *Cure-ious* I even read your words to her verbatim but she said she has not had a patient yet that went from those, to chemo then back to those. ??? Again to me, she is young..been an MO for like 7 or 8 years I think...so maybe she doesn't know> that worries me.
We discussed Verenzio>spelling sorry... *cure-ious she did agree that is a mono therapy but stressed that she didn't see a point in going to that right now since I/L/Faslodex failed. She said if I would have been on Ibrance/Letrozole...then she might suggest Verenzio/Faslodex now but...since I did Faslodex already didn't see the point. anyway moving on..
1) I asked if we could do a blood test to check for the P13K gene..she has heard of that but never ordered one so she is looking into it and will let me know where/how we do that.
2) The 2 treatment plan we discussed were: Aromasin/Afinitor or doing Xoleda. She said the thing about A/A would be that it would take a few months or more to know if it is working. I said "If I had bone mets only I wouldn't mind as much waiting to see if it can work...but since there is liver involvement and since there was already a new lesion formed while on the I/L/Faslodex...I don't think that I want to do that one". She understood completely about that. We talked about the Xoleda...and my concerns..she told me her biggest SE she hears on that is hand and foot syndrome> blisters, redness, raw...etc.. I told her that either way I do not want to make a decision on a treatment until I have the consult with the Interventional Radiologist at John Hopkins..and that I am wanting Cryoblation. (I just found out that appointment is next week Thursday late afternoon). She said ok to wait but doesn't want to wait longer than 2 weeks (if possible).
I am wondering if the radiologist can take a biopsy if he goes in to do the cryoblation? Definitely something I am going to ask. She is also having me see a radiologist about the met in the sacrum.
So I should have the PET results hopefully tomorrow. I welcome any and all input you all might have.....especially about the treatments etc.
PS: I also had, had a consult set up also happens to be next thursday with a new MO...I really really like the one I have but ...it's a little far and I feel like this other one has more experience..not much..but more.
I felt you all in my pocket literally!
Nicole
0 -
I ended up in the ER. After I posted on my portal, my MO called me. She was right, my HGB was 5.4. After two units of blood during the night, I was home by noon the next day. It went up to 8.6.
All of the SE were caused by the chemo induced anemia. I feel so much better but not 100%. Technically, I'm still anemic. Plus, all my labs looked very bad. So I wonder what's going to happen on Friday. I hope she will reduce the dose and or give me some more blood before my next chemo.
What an adventure. Actually, it all went very smoothly.. I have no complaints. My daughter took me and she was very efficient, keeping track of my meds and everything. Being my advocate. By the time I got to the ER, I could not walk. My legs were so weak and I could not get a good breath. Had to have a wheelchair. So, now I know what severe anaemia feels like.💞
0 -
Hello liver metsers.
October 7th, 2016 I was diagnosed with liver metastasis in both lobes, a T12 bone met and lung arterioles full of tumor cells (thanks to my liver).
I am still here.
Just wanted to give encouragement to others. I am starting into my 4th year from metastatic diagnosis.
0 -
Grannax, your severe anemia must have been scary. Glad your daughter got you to the ER and was so helpful. Hoping for your MO to make the proper adjustments and keep a close eye on you. In your pocket for your next chemo on Friday. Thinking of you.
0 -
Grannax- Shit. Hgb 5.4. Scary. Glad you are doing some better. Take it easy, girl.
0 -
Grannax! So glad that you went to the ER and that you are starting to feel so much better. I'm keeping you in my thoughts this week.
Best,
Katty
0 -
Grannax2..oh my. Glad your daughter got you to the ER. You are the first that I have "met" to have a hemoglobin that low and was alert enough to post about how you felt. You have amazing strength.
0 -
NicoleRod, you are doing all the right things to advocate for yourself.
You are also helping others who follow here, maybe don't post, but have the same questions. You are unique because it sounds like you have a new liver lesion (or maybe it was hidden?) and you are currently on Ibrance Faslodex and Letrozole. Whew.
It will be educational to us what the MOs finally decided as your next course of Tx. I am thinking of you during this stressful time.
0 -
Sandi. Believe me I wasn't very alert before they got some blood in me. Yes the nurses were pretty amazed but I was VERY sleepy. I guess people can pass out if they are that low?
0 -
Oh yes Grannax. Pass out, confusion, and organs not perfusing well. And cardiac issues.
0 -
No wonder the nurses were shocked to hear me conversing with them. It may be time for me to get one of those gadgets so that my kids will know if I need help. Especially since I live alone. YIKES
0 -
Grannax, I am glad you are okay. 5.4 is shockingly low. Super scary. I hope you and your team can figure out how to manage this. Is it thought to be the Gemzar that hits the hemoglobin so hard? I recall others having hemoglobin issues in Gemzar
0 -
NR, wouldn't be great if there were NO new tumor additions and the summer scans just didn't pick up the tiny one?
Then you can stay on this tx. It took 9 months for my tumors to totally respond I/L.
Just hoping you don't have to leave a tx too soon.
0 -
Ok...so the MO just called. There is nothing new..THANK YOU LORD JESUS...however the uptake on the 3 tumors that showed in the liver went up. She said she wasn't really concerned about the uptake but it that it definitely looks like progression.
Sandi...you have to understand...i did have a big response to the Ibrance/Let/Faslodex after 1 month the skin condition I had for over a year went completely away and all the pain I had in my left him and left lower back (sacrum) had all gone away I was PAIN FREE!!! Then 3 weeks ago it ALL CAME BACK...the pain and the skin condition. So it's like it was working and then stopped. NOW, I was off the Ibrance for 15 days and when i went back on it was at 75mg...(down from 100mg) could it be that it was not a high enough dose..yes, and I did mention that to her...however, they will not go back to 100mg because of my mouth sores..so either way...I don't think Ibrance will be an option...
EDIT to add in:
I forgot to mention...that not only did my skin condition come back 3 weeks ago and pain in sacrum and hip but back in August when I had the PET it said that the met in sacrum "had almost completely resolved"..well now not only is my pain back there but the met there grew as well...they saw that on the MRI...so there wasn't just growth in the liver tumors there was growth in the bone mets as well.
I am taking that as progression. I feel like I am very in tune with my body...and this pain is as bad if not worse as it was before I was diagnosed with Stage 4....and it was completely gone 1 month in on Ibrance/Let/Faslodex...to me ...that is progression mild yes...but progressing. I mentioned in the other thread if I would have been feeling the same all along and just the liver numbers changed I might not see it as progression and ask to stay on the drugs..but I have a Grade 3 cancer...and I want to be proactive now...I do not want to just guess at a treatment (though that is what they basically do) that's why I am insisting on the Blood Test for P13K...so maybe that will help.
0 -
Grannax2 , glad to know you are okay and you got some timely help from your daughter.
NicoleRod , sorry to hear that you have to move away from Ibrance. I hope you get on an effective, tolerable treatment for the liver mets. I was on Ibrance for more than an year but when it stopped working, my bone mets exploded all over the spine. Now I am on Taxol since six months and the liver /bone mets are stable.
JFL, yes Gemzar lowers the Hb but so does other chemo; I had low Hb on Ibrance, Xeloda,Gemzar and now Taxol. I have to get blood transfusion frequently to keep it at 8 or above.
0 -
Whew..NicoleRod, you are being put thru Hell right now.
Soon you will get your plan and so happy you are getting a second opinion from your new MO. The more info, the better.
I have never had a PET scan as my MO said it provides more questions than answers. Drove me freaking nuts that she wouldn't order this scan. She did tell me it can pick up inflammation and can cause confusion on interpreting results.
The MRI with contrast apparently is the gold standard for evaluating liver mets and you are right, you have to compare MRI to MRI or CT to CT or PET to PET.
Right now, I have scans every 3 months, alternating between MRI with contrast and then CT/contrast and bone scans. So MRI and CT/bone are compared at 6 month intervals.
When you meet with your IR, please sit down with him/her and go thru each specific scan (MRI, PET, bone) side by side for the visual comparison so you can actually see the changes. This was done for me. Have your reports and questions ready and take copious notes. I met with the IR as a consultant only.
Just out of curiosity, did your tumor markers reflect your progression? Did you say your liver enzymes were okay? Just can't remember. Think I recall your total bili was slight elevated. Has that worsened?
Stupid livers.
0 -
Sandi..great questions...and I forgot to mention yesterday that we talked about the Bilirubin..(I am suppose to have my labs done tomorrow or thursday so I don't know how the bilirubin is yet) but she did mention that the bilirubin may have been elevated since it only 12 days or so since getting the faslodex...so when I get it taken tomorrow we will see how it is...though I just added berberine and ALA into my regiment..lol My tumor markers have never changed from the beginning both this MO and my previous MO in NY said they cannot pay any attention to them because they haven't changed...they are exactly the same from the day I was diagnosed...
0 -
Mine too Nicole
0 -
Grannax2 - I am a lurker on this site. This will be a long post - sorry. I had progression to my liver after failing a study in 2015 (Ibrance II) In 2017, I had over 60 new cancer tumors to my bones, liver, lung and lymph nodes. I did Taxol, went to Lourdes, France (did the waters) and when I did my next scans, I had zero cancer. So I was NED for about 3 months, then had progression. I went on Genzmar in October last year and was hoping to get the great results that Hartish got - almost 2 years. However, about 12 weeks before I left for Spain, I was getting blood as my Hgb kept getting low. I ended up over the 12 weeks prior to my trip with 12 units of blood and one unit of platelets. My Hgb was 6.4 and platelets were 24,000. During the 12 weeks, I also had 4 thoracentesis done as my lungs were filling up with fluid. I had a thoracentesis and 1 unit of blood 3 days before I left for Spain. So I was ready. When I got to Portugal, I was fine, 3 days later however, I ended up in a Hospital in Spain with SOB. I was there for 7 days - I needed a thoracentesis and 2 units of blood with no Spanish and the hospital did not have a translator. Had to use Google Translate - very difficult. In 3 days, I was diagnosed with TTP - a rare complication with Genzmar. I was flown to a hospital in the Twin Cities, cost of $76,000 luckily I had insurance to cover it. I had plasmapheresis for 16 days and ended up in the hospital for 40 days. I am now back to work full time and doing 36 hours/month on the ambulance. I am a paramedic and feeling good. My point is, see what your platelets are. TTP shreds your platelets and lowers your Hgb, then the shredded platelets can block your kidney filters. I almost lost my kidneys. Watch your creatine and also my b/p never got below 200 in Spain. TTP can also raise your blood pressure. I believe that if I wouldn't have gone to Spain, I would be dead from the TTP. Two major hospitals, a internist and my oncologist did not delve into the reason why I was needing blood for the 12 weeks prior to Spain. Mayo was contacted and they wanted me to take a drug that was $400,000 but I was already on the mend. My sister is a MD in Alabama and her group said they are seeing more and more reactions to Gemzar with TTP. So keep on eye on your creatine, platelets and Hgb. Fasoldex failed me as I had progression that showed up on my September scans. I have 12 new cancer spots on my bones and 2 new lesions in my liver. I am now on Cytoxan, which I was on in 2007 and my mother was on in 1972. Hopefully, this old chemo will not fail me. Most of my pain has been decreased. Good Luck and talk to your oncologist about TTP.
0 -
Mediclisa...wow to your story...I am in awe of you right now. Praying your new treatment works!
0 -
Grannax: I know exactly what you went through because I went through the same thing in July. I am on Doxil infusion now and have the usual fatigue that goes with chemo. I was just feeling extra tired and not doing anything except to feed myself and take care of my cats and dog (I live alone). One night I went into the kitchen to get something out of a top cupboard and when I looked up to find it, I went out and ended up on the kitchen floor. I crawled to my family room and into my recliner. My son came from Washington State the next day and I felt awful. I called my MO and talked to her nurse. They called back and wanted to see me ASAP. My friend drove me down there (my son had left) and it was a good thing because I know I couldn't have driven myself. They drew blood and as soon as the results were back, my MO said "You're critically anemic!". She sent me to the ER where I got two units of blood and stayed overnight. My hemo was down to 5 when I got to the ER! Now I get my hemo checked once every two weeks even though my infusion is only once a month. I get Aranesp shots now when my hemo goes below 10.0. Still don't feel 100% and would like to feel like I did when I got out of the hospital for the transfusion!
0 -
Nicole, it was crazy. Here is a picture of me on the med jet from Spain. Very tight quarters. Genzmar was the best chemo with the least side effects for me. I had a liver biopsy last week. It’s interesting how you can have no new cancer then 3 months later boom! I hope and pray for a good plan for you.
0 -
Thanks Mediclisa. Wow you look happy there.
even through all that.So I have a questions..Liver Mets....I got my blood work done today....and Something that has never been low is low... PLT>> I am assuming that means platelets... the range is 172 - 440 RESULT 171 last time it was 345?!?! The result before that was 219.... Could I be anemic?
Also...I don't know how I would ever tolerate Chemo...my neutrophil right now is 1.9 - 7.9 is the range I am 1.4 and I have been off Ibrance for 8 days...
0
