How are people with liver mets doing?
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I love chaga tea. I'll have to double down. Thanks. I did cut my hear to above shoulder length to put less stress on it when I brush. It is a huge emotional/self image issue for me. I appreciate very much your comments.
>Z<
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Zarovka, a friend of mine, who uses extensions gets compliments every day about her hair. It's good that you have long hair. The extensions are long and you can cut them , if needed. She even died them to mach her color. If you find this interesting and have questions I can ask her. My hair is getting very thin too, but I can't use extensions becoming is short.
Best wishes and hug
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Babs, I love the French grandson photo. Zarovka, my hair thickness has waxed and waned. Best advice I have is get really good cuts with layers to add fullness. That worked for my long hair on tamoxifen and my short hair on various mbc drugs. My hairdresser is a treasure. Also talk to lalady about the halo if your hair is long.
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My hair has thinned a lot on IF in the past year. I decided to let it grow long so I can pull it up. At first I used hair piece so that it would look full while it was growing. Now, it's long enough to put in a high ponytail. Then, I style it into a full bun type do. I think it hides how thin it's gotten. If it was short, my pink scalp would be very obvious. Plus, it's easy and was cool in the summer. I don't wear in down because it's lifeless and limp and won't hold a curl.
Z maybe you could do this I with yours.
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Grannax - sounds like a great look. I'll keep it in my pocket.
The weird thing is the thinning is accompanied by burning scalp. When my scalp burns, my hair falls out. I'll go a couple of days with no burning. The pleasure of running my hand through my hair is amazing when the burning stops. But it starts again at some point. My last chemo was two small doses of gemzar in October but that is still the most likely culprit.
>Z<
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Z I remember each time I took IV chemo, my scalp would be sore/ burn before it came out.
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Grannax, I am on Abraxane and have lost about 60% of my hair (I have managed to keep 40% because I use a scalp cooling cap). I do the exact same thing - ponytail/bun - with my hair every day and one cannot tell how thin my hair has become. The thinnest part is the crown. A good spray on volumizer after I wash my hair helps too. I had my hair short for many years but fortunately had started growing it out before Abraxane so it is long enough to manage a bun. In full disclosure, I had a lot of hair to begin with so have a bit more wiggle room with losing that much hair.
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Great minds think alike! Ha. I was a hairdresser for over thirty years but had kept my hair very short after so much IV chemotherapy. One day I just got sick of having round, white hair ( that was my nephew's description of grandma's hair). Then, I found my hair piece that I had forgotten about. That gave me the idea of how to get through the transition.
I still look like a grandmother but that's fine with me. JFL I can easy picture your classy bun. 😄
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Grr. Typed long post and where exactly does it go in one swift erroneous motion?
Hard to believe this thread has been so quiet. How is everyone doing?
- I am waiting for flight to Nashville for second attempt at trial. Missed hemoglobin minimum by 3 tenths last week. Still 2 tenths too low as of yesterday but we're adding dehydration to bag of tricks...tried folate and iron already. Surely I'm gonna catch a break soon. Tired of carrying this angry liver baby and facing my own physical limitations has been no picnic. If I do get in the trial I still need the study arm. So much to chance. Here's hoping.
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Hi ladies, I'm looking for some advice. I have read through some of this thread and in particular what Bluebird said about the beginning of her liver mets and what to be wary of. I'm currently on ibrance/faslodex and generally feeling well. The odd twinge/pain in my liver area. Bones stable. Ct and mri 3 months ago. Show a problem spot but identified as a scar after contrast mri. This set of scan this week show stable bones but unidentified tiny diffuse areas. Mri liver contrast gave us no answer. I will have a pet scan in 3-4 weeks. My question is would a liver contrast mri not given us an answer and will a pet scan not give similar results? General health is very good, no fatigue etc . ONC said zapping them with radiation would not work if it' a diffuse area. What treatments would they recommend in this case? Any advice would be appreciated. I stay in ibrance until we get official result
I do have experience in hair thinning as discussed above. Mine thinned on ibrance 6 cycles in. Bald spot on back of head. I wear a very thing real hair wig with mixed highlights which I can wear curled and messy like my real hair. Wear it over my own hair so can do updos etc or tie into a ponytail.
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Hi Lillimae - PET scan might show hypermetabolic activity which would indicate cancer. Not a bad idea to alternate. I would see a specialist who does TACE or Y90 to see if they can treat that diffuse area. I don't know if they would work, but you want to know the answer. Do not listen to your onc on issues related to local treatment of the liver. They have no training.
Kaayborg - fingers crossed that hemoglobin rises to the occasion or the trial management takes you anyway.
>Z<
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thank you for responding Z. I know your where on ibrance and have followed you on your Japan trip. Okay I didn't know about hypermobolic activity. I will look into that. My onc has previously consultated with a very respected UK leading mbc consultant and this time he has said he will consult a liver specialist for their advice. I have one in mind. I will read up on TACE and Y90 and see how they can work on diffuse areas.
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This tread has been quiet. Z Have you decided what your next TX will be and when you will start?
I was supposed to be getting my PET today, instead I got sick. I'll go to my PCP today, I'm a little concerned it might be the flu. Lots of coughing, etc. I'm rescheduled for next Tuesday.
I know we have to be extra careful because we are immuno- compromised.
Kayborg It sure seems to take diligence and perseverance to get into a trial. Hope you make it this time.
Lilly I did have y90's but I don't think my liver mets were called diffuse. I had about eight tumors in both lobes.
I'm hoping I don't have the flu. I wouldn't want to add that to my list. Would I need to stop Ibrance for a week or so if I do have flu?
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Kaayborg, Have they told you the trick of walking the halls briskly right before your blood test? I failed several on the Hemoglobin tests and they told me I could not continue with the trial. My Mo called Dr. Hamilton and begged for one more chance. My MO gave me a b12 shot and I walk a solid 15 mins and it did the trick. Looking back.....I wish my MO had not done that bc the trial did not work for me and now Im dealing with lots of progression. But then again.....I would have always wondered it I had not tried it.
Good luck with the blood work!!! You got this!
Robin
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Oh yes Robin. I walked and walked. They had me come dehydrated and on iron and folate and drew labs 3 times right after but no budge. It is comforting for me to imagine you doing laps in the same place. Too bad I didn't know before. I was walking pretty pissed off to mask the tears.
Do you know Sabrina? I do like her a lot. Dr. Hamilton also wanted to try a red blood cell injection but insurance won't approve until they have iron labs which doesn't result for 24 hours delaying treatment til next week. Not sure I should wait. But this really is the perfect trial for me other than I still might not get the drug in the end. Ack.
I'm sorry you're stuck in the same crap progression place. May we find something good and soon Really hating cancer right now and who am I kidding...always.
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Kaayborg, Beware if the Shot they are trying to get you is Aranesp...generic name is Darbepoetin Alfa. They gave it to me and when I read about it. My MO said she is not going to give me that ever!!!!! I am quoting from the information they gave me on this shot.
Aranesp.....Your tumor may grow faster and you may die sooner if darbepoetin alfa is used as an experiment to try and raise your hemoglobin above the needed level to avoid a blood transfusion, or when it is given to patients who are not getting strong doses of chemo. It is not known if these risks exist when darbepoetin alfa is given according to the FDA-approved directions for use.
After I got this shot my TM were going up 60 points weekly! I would not let them give me the next one that was due. MY TM's went from 80 before the trial to 474 and lots of progression. They knew I had progression and still tried to get my to stay on the trial 3 more weeks.....knowing TM's were going up fast and progression. I said HELL NO!!! Well I said that to myself and politely declined to stay on the trial. Please don't mention this to Dr. Hamilton. I don't want to burn my bridges with them, and I want you informed.
You have a really good chance the trial will work for you since you are triple neg! Please run this shot by your regular MO before you agree to get it.
It would have been nice to cross paths with you at Sarah Cannon. I really like Melissa....Dr. Hamilton's nurse practitioner. All the nurses down there are so sweet. I liked Rhonda a lot and I love Dee!! Dee beyond a nurse and over the whole thing. Not sure what her title is.
Also make sure they are paying for your rooms! There are some 12 hour days on this trial! They either use the Hampton or Holiday Inn right by the center. I prefer the Holiday INN....restaurant downstairs, softer beds, and quieter rooms. I heard noise all the time at the Hampton, especially if you get a room with an adjoining door, and someone is in it. Also you can hear the heavy doors slamming as people enter and exit their rooms.
I will pray you get on the trial, and hope I have giving you some helpful information. If you have any questions at all...feel free to ask me.
Prayers for you from Tennessee!!!
Robin
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Kaayborg - How about compassionate use? It may be a blessing in disguise if you don't get in because if you can qualify for compassionate use then you know you are getting it.
>Z<
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Robin thanks. I did run it by my mo and she said okay but I will share with her what you said additionally. She is wonderful and I feel comfortable asking her anything.
I do have family here so no accommodation needs but I appreciate your looking out for me.
Z...for sure. That is my number one question for tomorrow but it is a long shot since it is a new drug and not approved for any other conditions.
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Not related to liver mets, but i just got back from PCP. I tested positive for Type B flu. I started having symptoms on Sunday. I'll start Tamiflu tonight. Doc says it could take two weeks andi have to stay off Ibrance for two weeks.
Any advice?
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I had a nasty cold, possibly the flu, for about a week. So first, my condolences. Still coughing but this was the first day in a long time that I sorta didn't feel sick.
When I was taking Ibrance, I got sick a couple times but I did not stop taking Ibrance. My WBC were never that low. Generally, Ibrance doesn't seem to interfere strongly with fighting infections. However, no reason not to take a break if that feels like the right thing to do.
The phase III trials for Ibrance looked at this question. Response to infection was one of the side effects measured. I wish I could dig up the results. There was some increase in infection rates but not, I believe in the ability to fight the infection ... something like that. It's worth looking up or asking your doctor for this data if you are interested. Many doctors assume Ibrance is like chemo and severely impacts the ability to fight infection, but that is not the case.
>Z<
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Hi Ladies,
Just wondering what you'd make of this statement in my last CT report. "Tiny low attenuation lesion in segment ll of the liver is unchanged and likely represents a small cyst (2.182). No concerning liver lesions...." This is the first time I've seen anything about any lesion or cyst in my liver mentioned in 5 years of reports. I can't understand how it can be 'unchanged' if it's never been mentioned. I'm worried that the 'tiny low ..lesion' means that I've cancer in my liver now. I'm afraid to ask my onc. about it as the nurses are very reluctant to give me copies of the reports and I'm concerned they'll never give me reports from now on if I make a fuss. The end of the report says 'Stable appearances' and that is what I'm told, with no elaboration.
Thanks xx
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Hi Grannax, I had the flu about 2 weeks ago. I am stubborn so didnt stop Ibrance or go to my PCP, I just tried to fight through. You are much smarter than I was! My MO told me yesterday to always call her if i am sick or have a fever- she can call in antibiotics, just in case, to keep things from getting worse. I am on my off week for Ibrance now, but for the first time, my neutrophils were low, which MO also thinks was likelydue to the flu. Have to get retested tomorrow to see if i can restart on time or not. I dont know how I would have felt if I had stopped ibrance while I was sick, but I definitely did not feel myself or back to normal for quite awhile.
So no real advice, but I think you were smart to get a doctor to weigh in- I know next time, I will too!
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Aoibheann, benign liver cysts are common, and radiologists seem pretty confident that they can tell the difference between a cyst and a tumor. "No concerning liver lesions" is unambiguous, so it looks like good news on this scan. As far as "unchanged", perhaps the radiologist pulled up previous scans to compare, as is standard, and thus the comment. I have found that sometimes a radiologist will be very thorough and note everything even if it is benign, and sometimes they will be very brief with their comments. I hope you can take a deep breath and set this aside. As far as asking about it -- in Ireland do patients not have a right to copies of all their medical records?
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Kaayborg, this sounds so exhausting. I really hope you can get the drug on compassionate use!
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GrannaX2, prayers for a speedy recovery. Glad you jumped right on it!!
Robin
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Kaayborg, keeping my fingers crossed you can get the drug - through the trial or through compassionate use.
About being sick on Ibrance. DO NOT TAKE A CHANCE. You could die from getting an infection. Seriously. When your ANC/WBC are low, your body doesn't have the tools to fight off a nasty infection. This is the only thing that has ever worried my DH (who is MD) on all my many treatments. He has seen many, many patients die from infections over the years. The risk may be low but it is a real risk. Grannax, better safe than sorry. You did the right thing.
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Thinking of you kaayborg and crossing fingers you get in and have wonderful results from this trial.
Grannax, I concur with JFL about not taking a chance. I have heard that Ibrance stays in your system the long anyway so a break won't hurt.
On the hair issue, Wendy I am sort of getting to your mind set too. My hair was my best "asset" on the looks front. Now I almost have enough hair for a pixie cut and think I can live with that just fine. I got very tired of wigs fast and just go with the almost bald look or a cute winter hat now. I look ten years older than 6 months ago but better than the alternative.....Lots of life lessons when you are in our boat right?
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Artist, your hair has grown back quickly following Abraxane! How long did it take for hair regrowth to start once you finished?
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Kayborg-Oh I am thinking of you a lot right now. You must feel like banging your head on the wall. Surely the drug will be made available to you one way or another. Imagining you surrounded by positive healing energy.
Hey Grannax- Really? Not fair. Flu on top of everything else. Your pitbull DD was right! Snuggle in and heal quickly.
Love to everyone else here in liver mets land. Some kind of twisted amusement park... MJH
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Two time trial flunkee, that's me. Hemoglobin just keeps falling. Coming home today and back to chemo Friday. I'm glad though. I'm just so glad to come home.
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