How are people with liver mets doing?
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Kaay - flunking sucks. You deserve a break. How far is the drive to TN? My brother (ER dr) lives in Parkersburg. says it's been pretty chilly there. Hope you fare better on some chemo - what are you taking next? How is your hair? Hi Robin - been thinking about you - please pm me.
Ladies as I finish up 6 mos of IV A-train, I am extra tired. Needed a ride to a client lunch at the Palm in Beverly Hills yesterday - with my hair halo on, I looked pretty good. But very tired and bruising easily. My bracelet bruised my wrist! Got one of those red spots that look like blood pooling underneath my skin. sigh Hope my numbers are ok for chemo today. One more round after this - then graduation. But to what? 0 -
Kaayborg, I am sorry to hear you failed to get on the trial. Maybe this is God's way of looking out for you because you might have not even received the drug and then things could have been terrible. What kind of treatment has taken your hemoglobin down? Are you having any side effects? When I was on the trial my red blood cells tanked and I could hardly walk from my bathroom to my bed without gasping for air and feeling faint. They gave me 2 bags of blood and the red have been holding since, and that was weeks ago. I will never let myself get that bad again without demanding blood. It was awful!
What kind of chemo are you doing?
Many Blessings.
Robin
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Hi Lalady, Glad to hear you are coming to the end of the A-train. I am back on good ole Carbo and my demon cells hate it!! My TM's fell 7 points last week on a really low dose of 120mg, and then dropped 78 points on the 2nd treatment of still a low dose of 135. My actual dose should be 190, but that tanked the platelets too bad last fall and I was continually missing treatments due to low platelets. I am still battling with platelets by briskly walking the halls for 15 minutes, right before blood draw. A little secret I learned at Sarah Cannon Cancer. I am also taking double dose Turkey Tail. We will see if that does anything.
So how much hair did you lose with the cold caps? I sure you look beautiful hail or not. So do you think you will go on to Xeloda? It really seems like a wise choice. I am putting off Verinzio (sp) until more patients have tried it. I took it for 2 days and on the 2nd day I was throwing up so bad. I immediately stopped! It was just something my MO said I could take for 5 days while I waited on my first Carbo treatment.
Claire get your platelets checked as soon as you can. Blood pooling and easy bruising is a sign of low platelets.
Hugs,
Robin
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Well Kaayborg, that really sucks but I know how you feel about being at home. How is your liver baby? Can they drain fluid from it to make you more comfortable? What chemo is next?
Last week, my hand was puffy and swollen. I had an ultrasound that ruled out a blood clot. I went down a few days later but not completely normal. Yesterday, I noticed what looks like little red worms under the skin of the same hand and today it si puffy and swollen again up to my elbow. I have not had any surgery. It is the same side as the lymph node involvement under my arm. My oncologist is out of town at another clinic today so my nurse says to go to the emergency room. Hell no! Too many people with the flu and lord knows what else so no way I am going. Can I get edema because of the liver lesions? My hand feels like a sausage meat inside a tight skin. Thoughts?
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Kaylynne, Sorry you are dealing with this. It may be lymphedema if those nodes are not draining properly. I had a swollen arm on my port side (port was on inner arm) and had a doppler ultrasound that showed a small thrombosis. I followed up with my MO and she sent me for her own doppler and that technician said all clear. I went to see my vascular surgeon who put the port in and he did his doppler but still could not see the thrombosis. But during the doppler, they placed the ultrasound device on my upper inner arm and detected no flow of blood flowing in that area. I had surgery to put a stent in and remove the port and they did find they thrombosis.
Maybe get another one? I know how painful the swelling can be!
Pray you get it resolved soon!
Hugs from Tennessee!
Robin
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Thanks for the info. The port is on my right side so it may be the lymph nodes causing the problem.
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Hi ShetlandPony, thank you so much for setting my mind at rest about the liver lesions.
The right to see your own medical records in Ireland is ambigious. 'The law relating to medical records is ill defined. Health authorities may argue that the actual medical records are the property of the doctor or the hospital. Much depends on whether your contract is with a doctor or a hospital or clinic. However, the information contained in the records is information that is the rightful property of the patient. For example, should the patient wish to change doctor, the information in the records would be needed for their continuing care. Under the Freedom of Information Act you can secure your records from public hospitals but this legislation does not cover private hospitals.
A doctor may refuse to disclose information in medical records to a patient, if he feels that this could cause serious harm to the physical or emotional well being of the patient. In such cases, the patient may request that the information be disclosed to a nominated person – for example another health professional.'
I attend a private hospital and the policy is to telephone the clinic a few days after a scan. The junior doctor on current rotation rings back to say whether the results are stable or if you need to speak with the onc. At my next appt for tx in the clinic I ask for a copy of the report summary and depending on the nurse who is looking after me on a particular day I'll get the printout or not. I'm amazed when I read of some of you guys in the States who are able to access your records online!
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Oh. F@#$K. Hugs Kaayborg. What's the chemo plan?
>Z<
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Hi- I guess I belong in this group. I was diagnosed with Stage IV with bone and liver mets in Sept 2017. I am ER/PR positive HER2 negative. My liver tumor was 8 cm when found. After 2 months on Tamoxifen shrunk to 2.5cm. Was changed to Lupron, Letrazole, Ibrance. Will recheck CT 3 months after med change. I read some of the posts ( not all ) in this thread. Any suggestions about my situation? Is my MO on the right track? I will review the previous posts and follow from now on.
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Candy - this is where you belong! It's worth getting a second opinion if you have any doubts about this decisions. Many doctors would keep you on tamoxifen along until you see progression. The side effects are going to be lower. Others will say that hitting the cancer with a bigger hammer is the way to go. It will be interesting for you, I think, to hear the different perspectives. Both approaches are reasonable. There is a lot of ambiguity in the treatment protocols for MBC.
>Z<
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Hi candy-678. I am not familiar with Lupron as I am post menopausal. I do take Letrozole and Ibrance (with a Prolia injection every 6 months for osteoporosis). The only advice is to make sure your counts are checked so your white and red blood cells and platelets are not too low. My biggest issue was low platelets.I was switched from 125 mg Ibrance to 100 mg after 3 cycles. I am now on cycle 14 and have no evidence of my widespread liver mets, the questionable T12 is healed and have no evidence of tumor cells in lung arterioles. I know the little buggers are still hiding, but defeated for now. I have blood work around day 25-28 and CT scans with contrast and bone scans every 3 months. I am the most tired at the end of the 3rd week and into the beginning of the new cycle. Exercise really helps. Sometimes I just walk around the house for 10 minutes if I can't get outside. We all respond differently and it can take up to 6-9 months to see a difference.
Zarovka, I am following your story. I am curious why you did not choose Falsodex (SERD) with Ibrance after your progression. It is in my queue as needed, then possibly Afinitor (mTOR) afterwards. I am in discussion with my MO about future Verzenio. Is there concern from your MO that the ovarian suppression is not blocking all estrogen? As far as supplements, I drink daily a lemon juice elixr made with fresh lemons, garlic and ginger and eat cultured yogurt every day. My husband makes Kefir and I was also taking a probiotic pill, but my GI told me not to overdo probiotics due to concerns of imbalance in the gut. So I just backed off that pill. I admire that you work hard in your research to find what works best for you. Wishing you great success in your new treatments and safe journey to Japan.
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So much going on here. Wish I knew more of anything to help answer questions. But am one big question mark myself.
Copy paste of the recent CT scans. "CT SCAN - my scans of neck, chest, abdomen/pelvis was pretty unnerving. The doctor kept listing all the lymph nodes and nodules and lesions on the report and then in the impressions he would say "likely due to progressive metastatic disease." Also right middle lung lobe is completely collapsed (used to be upper for 1 yr which recovered in autumn 2017) as is the bronchus to the middle lobe collapsed (not to be confused with main lung bronchus). What is good is there is very little increase in the 3 liver lesions. And the pain is only if I have done something to aggravate like bend over and brush the dog. Also there is a lymph node w cancer it seems abuting the carotid artery and paralysing my right vocal cord to boot. It that grows larger then I am scared of stroke. Some in ovary area, in kidney / adrenal..... I do not know when the this and thats grew but last PET CT was Oct 2, 2017. Could have been there then and not worth reporting due to size or SUV uptake. Because that is what was done in April 2016, got a gold star since report was so good and I took a break from tx for summer then found out in Oct 31 scan that they were all there but too small or too low SUV uptake to mention. I am 6 weeks off Xeloda which was not working. And two weeks on Aromasin. Not to take other tx until stronger, said new MO. See him on 25th."
And that's all I got.
Thinking of all you and the efforts and trials you are going through. Hope answers present themselves for every dilemma.
Diane
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Sandibeach - Funny you should ask. I asked the onc to get insurance approval for faslodex and zometa at my appointment on Tuesday and I have appointments to get the shots next Tuesday. I am still deciding what to do. I will have a blood draw for TMs tomorrow. I'll get the results Friday. I'll think about it and consult with my cancer consultant over the weekend . I am very much on the fence about doing Faslodex and if I can avoid it I will. Let me be clear that my MO wants me on Faslodex yesterday. But at this time I am inclined to do the Zometa but not the Faslodex on Tuesday. Why?
My main goal between now and mid-february is to be in the best possible condition for immunotherapy. I have had a very hard time on hormone suppression. The side effects interfered with everything from my ability to exercise to my ability to think straight. Lupron shots have got my estrogen to non-detect levels without severe side effects so that gives me some insurance since I am 90% ER+. I think I can tread water between now and my treatment in February with alternative therapies that I believe have worked in the past. I have some doubts that Ibrance did anything at all based on the progression of the disease last year and the only thing that held the cancer back was a complementary regime. I've doubled down on the complementary regime these past few weeks and we'll see what the scans say in early February.
In March after I get back, I'll be considering faslodex or abemaciclib or the two treatments combined, depending on the results I get from immunotherapy and also depending on how my complementary strategy performs over these three months. I don't think I will go back to Ibrance which I believe was more or less a bust for me. I actually have some concern that neither CDK 4/6 inhibitors nor hormone suppression will work based on genetic testing results. So that's another piece of my decision ...
If you are dealing with liver mets primarily, I personally think the best move is Y90 or TACE after Ibrance. After that faslodex alone or with a CDK 4/6 inhibitor is a great choice if you are sticking to the standard of care.
>Z<
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Now we've got this thread hopping again.
Kaylynne, I hope your problem resolves soon. Go to the ER if you need too. I've been twice without any protection from infection at all and came home without any illness.
Unfortunately never any fluid to drain for me, just a seriously enlarged liver. I'm depending on oxycodone more than ever. The plan is to give pembro another cycle or two but looking at my AST today at over 200, when it was just over 100 on Monday and in double digits 5 days before that makes me wonder if I shouldn't start abraxane which may give a faster response. Will discuss on Friday.
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Kaayborg - two reasonable options. Any theories as to why your hemoglobin is so low?
IMO IMMU 132 could be approved in the next year so it may just a matter of finding a way to tread water.
>Z<
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It is nice to be in the company of well informed folks who work hard to understand their individual cancer and then seek treatments and trials to live longer lives. I am still learning.
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Bluebird That does sound like a difficult report to read and absorb. I'm so sorry it's it so many places.
Z where are you going for immunotherapy in February?
Having the flu has been exhausting. Coughing day and night, nights are the worst. Fever is still high. I am going to take two weeks off of Ibrance and wait two weeks to have PET.
Meanwhile, i feel like I'm in jail. I cant go anywhere until fever is gone for at least a day. I sure dont want to expose anyone else to this.
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I got really sick and could hardly walk, and it didn't shrink my tumors.
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Hi Candy, wow that is quite a response from Tamoxifen! Did they do a biopsy on your liver?
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Robin I'm a bit gobsmacked right now you are on a dose of only 150mg? Is that correct I'm on it as well and responding as well but I'm getting 1650 mg and that's supposed to be a low dose. I was told it's a weight thing and height thing I'm 6'1" and weight around 169 lbs. Do I need to speak to my onc about this? Hmmm. Are you on anything else?
Wendy
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Daywalker-
Yes. I had a liver biopsy before starting treatment. They first found the mets by accident----a CT scan of abd for something else. The CT was sure it was metastatic disease, but they wanted to do a biopsy to verify.
Daywalker and others-
How large was your liver tumors when diagnosed? And did you see such a decrease when first starting treatment? I was very happy with the decrease on my first CT after starting treatment, but I fear it will grow again.
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I am so glad that rpoole is on a low dose ... I think we are generally be overdosed with these drugs. I am going to repeat a summary of comments at SABCS 2017 FROM THE FDA.
Reducing the Maximum Tolerated Dose Due to Drug Toxicities:
Dr. Tatiana Prowell of the FDA strongly stated that patients do not have to use the FDA-approved dose of a drug if there is reason for using a lower, less toxic dose. She specifically stated, "Dose is something that we are increasingly recognizing as a common error that is probably the easiest to avoid. In oncology, specifically, drug developers have a tendency to move forward with the maximum tolerated dose, even though it is not clear it is necessary or appropriate for targeted drugs. This happens even when they have data suggesting that a targeted therapy maximally inhibits or stimulates its target at a much lower dose. It results in a lot of unnecessary toxicity." From: http://cdn2.hubspot.net/hub/1670/file-983271054-pdf/Tatiana_Prowell_(1).pdf ?t=1449608504236
>Z<
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Wendy3, Actually I did a low dose of 120 and then my last one was 135. We had planned to go up to 150, but I think I am going to stay with the 135 for now. The higher dosage was killing my platelets last fall and I had to stop the drug completely. I am not on anything else but Carbo. Could your dose be 165? I am 5' 5" and weigh 109.
Maybe you should ask your oncologist about the dose. My highest dose last fall was 190.5mg. Are you having any problems with your platelets or red blood cells?
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Regarding getting sick while on treatment. When I had just finished Taxol (wintertime), I got sick and dutifully called the cancer hospital's 24-hour number when my fever reached a certain point. I was told I had to come in. My goodness! They took blood from both my arm and my port (to check for sepsis I think), took a snot sample for testing (later result showed influenza), and prescribed both an antibiotic and an antiviral. Such a big production, but as JFL says, things can turn bad if your body is already compromised.
Artist, are you going to keep the pixie or grow it out? I decided I liked my pixie, but I got a long wig that looks like my former hair for certain occasions. The wig has no salt among the pepper! Kaayborg, there's no place like home. Now we need a good treatment for you, pronto. MJH, yeah twisted amusement park. Lalady, were you ok for chemo this week? Rpoole, I'm happy to hear that carbo is working for you and that they are tweaking the dose. Kaylynne, did you get your hand checked for thrombosis, lymphedema, etc?
Aoibheann, I see the difficulty with the records. So I guess you just have to play it cool so they won't think it will "harm your emotional well-being" to get your reports. Or get them sent to a sympathetic doctor who will pass them along to you. It would harm my emotional well-being to have my own medical records withheld from me!
Ok, still catching up on the thread. More responses later.
Welcome, candy. I second what Zarovka says about your treatment plan. Remember, you can still keep tamoxifen in your bag of tricks since you didn't stop it for progression.
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Kaay - suggest you jump on A-train (Abraxane); my TMs dropped by 1/2 the first month! It's fast - should be ok for TNC, but talk with onc. I just finished my next to last tasty dose in the big chair yesterday.
Z - a thumbs up on faslodex from my UCLA onc; firstly as a regulator it is generally used to compliment Ibrance or Abe, as its not an AI. I was on ibrance+fas+arimidex for 18 rounds before progression with jaw met. Fas worked very well on my lone lung met which is now gone. The butt shots did not bother me - and you can continue to exercise. Just my kind thoughts for you for a Feb med. Remember you came back from Nippon with 20% undetected liver mets, let's stamp them out before chemo, etc. Based on FALCON, faslodex can be used alone instead of an aromatase inhibitor. FYI Naturegirl2 was on faslodex for 5 years before progression.
You will know what is best - excited about Japan 2.0.(()) Claire
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Robin after I posted I went and grabbed the packet it's 1650 mg she wanted me on 2200 and I complained . My feet are a mess my hands are all bloody and cracked other than that my blood work is still good but she did say my bone marrow is working hard. This comment didn't go over so well. I will ask about a major lowering of dosage ct scan next week should be good I feel good if so lowering the dose..
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Wendy3, Just to clarify...your on Carboplatin right? The only side affects I experience are low platelets and red blood cells. My MO told me Carbo is hard on the bone marrow, so that dose seems high. How long have you been on it?
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Lolololo im going to blame this on chemo brain or I'm getting senile. Robin I'm on Capecitabine so different drug saw the cap and didn't double check. Sorry for the mix up. I still am going to ask for a reduction in amount. My bone marrow at last blood draw showed signs of stress whatever that means. Going back to silence move more reading less typing better that way
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Grannax, please make sure you haven't developed pneumonia.
Lalady! Only one more date with the big chair! I know you didn't want to do this, and I admire your determination to go ahead and do what you needed to do to beat back the beast -- and cold cap! -- while continuing to work.
Wendy, no worries. We all do those reading or typing mistakes and have the perfect excuse for it.
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My report: Xeloda is treating me right. Last TMs were low normal. This may be a second time of NEAD for me, both times brought about by chemo, not endocrine therapy. Not sure when my onc will want another scan. We have cut back on them now that we see how reliable my TM is. I am tired but still dancing and doing basic chores and driving my kid around. I'm nervous about how hard I fell off the wagon last month and whether my TM will go up because of it. I did not do well with exercise, sleep, diet, or stress because of the break from dance and yoga classes, and three family crises. Ok and binge watching some shows which was because of the stress and tiredness.
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