Argg trying one more time: replace the asterisks with the word d-a-i-l-y-s-t-r-e-n-g-t-h
So sorry to hear of your husband's diagnosis. It's good that he does not have any complications or pain symptoms. My husband, too, has multi-focal HCC from hep c, and like your husband, he sleeps a lot these days.
Other options besides Nexavar are usually only available if there are less than 3 tumors... did doctors say how many tumors, and how large? The stage of tumor development and other factors determine what treatments are offered. If doctors are recommending Nexavar, it is best to get your husband started on it right away to see if he responds; in some cases it can significantly slow or halt tumor growth... from what I've read there have been cases where folks stay on it for years and do well. My husband is starting his Nexavar tomorrow as soon as we receive it from the pharmacy.
I wish I knew more about diet and therapeutic foods, but I'm not aware of anything to control the HCC; I do try to have my husband follow a 'cirrhotic' diet, which includes limiting salt to 1000 mg or less a day and ensuring low fat, adequate protein and sufficient nutritional intake. Hope that helps some, and don't give up hope. Best wishes to you and your husband. ~eureka
Thanks so much....... for responding, my husband is functioning most days, just now starting to complain of leg pain in right groin area, currently taking supplements until drug Nexavar comes in the mail, expecting it today hopefully, he was told that his liver consist of multiple tumors in both lobes ranging in size of 2.5cm to a few smaller ones and I think slightly larger, still contained in the liver according to scans. He has never had any chemo treatment since diagnosis, hope he doesn't suffer those nasty side effects because of the esopogeal varices can rupture if vomiting occurs, his platelet on the low side, clotting time an issue for bleeding. I am scared for him and what he is still facing, I am the basket case, he is going about is days as usual, still searching for other methods to help him like naturopathic ways, my husband is 59 years old too young, We are keeping the faith and trying to listen to God's guidance and conventional medicine. You to hang in there, keep the faith that Nexavar will work for both of them soon. Best wishes. Peggy
So our husbands will be starting the Nexavar at almost the same time -- maybe we can keep in touch and help each other along. Since your husband has varices, have his doctors talked about doing any banding to minimize risk of rupture? At minimum, he should be on a beta-blocker to reduce his portal hypertension if they are not doing intervention.
From what I've heard, Nexavar is not as "tough" on the patient as many other cancer chemos are, but of course, every patient is different... I sure hope both our husbands have no side effects other than good ones! I know what you mean about being a basket case, but listening to God's guidance is indeed what gets us through.
I'm glad to hear that your husband is going about making his days count... it's all that each of us can do. My husband was diagnosed when he was 57 and only has his right lobe remaining now; he also has multiple tumors, the largest about 4cm... but he's made it to 61 years young, so we're hoping he'll make a few more years at least. Wishing you and your husband lots of luck and strength... keep me posted how things go for you. Take care. ~eureka
Got your note, well appreciated, glad to keep in touch with you, nice to have someone to communicate with on the same level of this terrible disease. My husband took his first dose today, I need to work this evening, will worry about him all night, he suffers with leg cramps during the night, I do not know if this is related to the disease or not. He takes Cal/Mag powder in water before retiring to bed, it seems it helps some nights and other nights, NO.
I did check with his doctor about the varices, he said not to worry about it for now, side effects not presented as yet. He has compazine for nausea, hope this medication works in case of nausea to prevent vomiting. The worst side effect I have heard of is blistering on the skin, especially on the feet. Said it it very hard to walk at times with sore tender feet. If this happens, may have to see a dermatolgist for skin care.
Well, in any case, it will be as it may and hope not too bad to tolerate. We will continue to pray and hope their attitudes stay positive after the first two weeks when side effects will present itself. Take care and please continue to keep in touch and I will do the same. Have a bless day. Peggy
Glad we can help to support each other and 'hold hands' through this! My husband took his first dose this morning, but he's starting at 1/2 dose for the first two weeks, 200mg twice a day... he and his doctor decided to ease into it because of a couple of other factors. So far, he's feeling some upset stomach and cramping and diarrhea but felt good enough to get out and do some light work (he's a semi-retired landscaper).
Is your husband's doctor a hepatologist or oncologist? Does he have experience with patients with cirrhosis? Personally, I don't think it's wise to 'wait' for varices to present 'side effects'... the 'side effect' of varices is a bleed!... is your husband at least on meds for management? If he has varices, then he has portal hypertension, and it can be managed with a non-selective beta-blocker... my husband was found to have trace varices back in 2008 and he was put on nadolol, and none of the varices have grown since then, so I'm a believer in preventative measures...
It's good that you've already got some safety nets for the nausea already, definitely better to be ready than not when it hits. Did you guys get the the little kit with the Nexavar that included the lotion and socks? I actually got a call from the NexConnect program today, which was really reassuring... a representative went through all the side effects and advice on what to do and look out for (the website's actually pretty helpful too). She said because skin and feet are a common problem, applying a lotion with urea every night and putting on thick socks over them helps lessen the severity. Hubby will just love getting his feet rubbed every night ;).
Your husband's leg cramps could likely be a magnesium deficiency, pretty common with liver disease... if the Mag powder isn't working, doc may need to check his levels... to be perfectly honest, I'm probably my husband's doctors worst nightmare, but I believe that it's the doctors' job to do everything possible to make a patient comfortable and safe as much as they can... and I'm not beyond being very persistent in making them live up to that responsibility.
My husband almost got cold feet today and hesitated, but he plunged ahead with a little prodding from me, and so far so good... I'll be praying for both our husbands to do well. Hope you had a good day at work... try not to worry too much... I say that to myself all the time :). We can only do our best and have faith... may our Father bless you and yours.
I am sorry about the delay in responding back, I worked the last 2 nights off of very little sleep, it is hard for me to sleep during the day after getting off work, I applied for same position for full time hours, currently working part time hours, I wonder if it is best to stay part time right now. There are more benefits offered and of course more money with full time status, still pondering over the pros and cons.
Well, my husband can be stubborn and not listen to me, he continues to take vitamin D3 daily, it gives him hand and leg cramps, I suggested to take once per week, when he did listen for a moment with laying off the vitamin, his hand cramps ceased. Now this morning he went back to taking the vitamin and informed me he had taken one yesterday, hand cramps returned, gave him a dose of Cal/Mag to see if it can help. His dietitician recommended Vitamin D3 daily, but if it affects him, he should lay off until.... or she may offer an alternative.
Besides from that, he is doing fine, no real side effects from Nexavar as yet, able to work as usual and appetite still good, just some fatigue noticed after a long day. Itchy skin persist daily, can you tell me the name of the lotion and the phone number of the company, because we did not receive any additional information or product samples to help with the skin or feet. When I heard of something like that available and ran it by his doctor the oncologist, word sent back from nurse manager that we can cross that road when it happens. I am in full agreement with you on preventive measures just in case. I too am his doctor worst nightmare, because we are dealing long distance with this facility, so I will have every question proposed and will get an answer. They don't like when you research things to help your love one and bring it up to them.
Have you heard of "Control Amino Acid Therapy" by AP JOHN, really good reading on how to decrease size and possibly kill cancer cells. I truly believe there is a cure for cancer and because it takes so much money to prove it and the medical/drug industry world would not benefit from this, it is kept low key.
Hope the present protocol will help our husbands live a longer and good quality life, only God knows and I pray our prayers are accepted each day and answer.
Hope you continue with more good days than not so good days. Thanks for keeping in touch, it really helps to share info, concerns and support. Peggy
Important for you to get your rest too!... no apologies necessary... I hope your work schedule pans out well for you and you get the best of both worlds.
My husband takes a 2,000IU of Vit D per day too, but he hasn't had any cramping problems because of it. I understand it's often prescribed for patients with cirrhosis because it's a common deficiency that can cause problems, including accelerating osteoporosis, so it's a pretty "standard" recommendation; however, if your husband is getting some ill-effects, it may be worthwhile to have ask docs to have his blood checked to see if it's really necessary to administer.
My husband developed a temperature last night, got up to 101.4, but has come down since then. His blood pressure is a little higher than normal, but not hypertensive so I'm just keeping a close eye. I've not heard of the AP John book, but I'll definitely look into it. Thanks for the pointer.
As far as resources, a very good friend of mine gave me all kinds of links, maybe they'll help you as well:
Nexvar manufacturer website
How Nexavar chemotherapy is given and possible side effects.
Generic Name: sorafenib (Pronunciation: sor a FEN ib)
• What is sorafenib (Nexavar)?
• What are the possible side effects of sorafenib (Nexavar)?
• What is the most important information I should know about sorafenib (Nexavar)?
• What should I discuss with my health care provider before taking sorafenib (Nexavar)?
• How should I take sorafenib (Nexavar)?
• What happens if I miss a dose (Nexavar)?
• What happens if I overdose (Nexavar)?
• What should I avoid while taking sorafenib (Nexavar)?
• What other drugs will affect sorafenib (Nexavar)?
• Where can I get more information?
17.5 FDA-approved Patient Labeling
Revised: 2/2009 14331
©2009 Bayer HealthCare Pharmaceuticals Inc
American Cancer Society - Cancer Survivor’s Network
Primary liver cancer and Nexavar- patient experinces
(seems rather old posts)
Nexavar User discussions forum
New Analyses Confirm Nexavar's Efficacy and Safety in Multiple Patient Subsets With Liver Cancer
Hepatocellular Carcinoma - University of Nevada School of Medicine
AASLD Practice Guidelines on Screening & Surveillance for HCC .....
Sorafenib* (Nexavar); Erlotinib (Tarceva); Sirolimus (Rapamune); Capecitabine (Xeloda) ...
Liver Cancer becomes more treatable and Preventable
An Expanded Role for Systemic Therapy in Hepatocellular Carcinoma
AASLD/AGA Institute GastroSlides Unit on Liver Cancer (very large file!)
The Nexavar website has a link to sign up for NexConnect, but if you want to call them instead, they are available 24 hours a day, 7 days a week at 866.639.2827, and I have found them very responsive and most helpful. Wishing you peace and comfort. ~eureka
MH blocked the Nexavar User discussion forum... the ****** should be replaced by the word
hello im stage 4 1a hep c blood markers are 9000 and double every 30 days so far no tumors found will be doing mri in a week trying again after years of leg cramps terable ones only foot and leg massage help and hot showers
The AFP continuing to rise needs to be investigated thoroughly, though doing the same test over again may not necessarily be the best idea if it it's been done and didn't show anything. If you just had an MRI, docs could do a tri-phasic CT scan next. Have you had a CT-Scan yet where they inject warm stuff in your arm first? And how about ultrasound, when was that done last? Have you been checked for testicular cancer as well? AFP isn't only about liver cancer, so docs should be looking to rule out other concerns as well... best wishes.
Hi, Things have been moving along with my husband, now the Nexavar is showing some side effects with the skin, noticed papulars of redden raised spots on his skin which are itchy and looks somewhat puffy, they appear on his thighs, left hip, upper back and smaller areas on right forearm, I purchased a jar of Aveeno skin cream (blue top) to apply on those areas and he said it helped last night.
Received a call from his Naturapath today regarding leg cramps, she suggested extra Magnesium during the day hours and continue the powder Cal/Mag at night, lab results show low magnesium levels, hopefully this will help him get a better night sleep. With trying to keep his immune system strong with diet, its gets really hard to eat often and take all the added supplements. He said to me last night, he just wanted to go to bed and not take anything else, but he took the last of his daily regimen anyway. I now place afternoon dosages in his lunch bag to take before coming home so he can eat dinner sooner than later. I need to work tonight, I hate leaving him at night now where it did not matter before.
Thanks for all the websites sent, have not had a chance to check them out, but I will.
I pray every moment I get asking God to heal them and if not heal them, at least help them to live with this disease by placing it in remission. My life will not be the same without my husband and it would be hard for me to get through it if I loose him. Continue to keep in touch, Peggy
The folks at NexConnect suggested using a lotion/cream that contains urea; they sent me a sample of "Udderly SMOOth" (unmistakable black-on-white cow patterning on the product), but they recommend anything with urea as the primary ingredient is best. My husband hasn't had any noticeable skin reaction as yet, but he's just started full dose yesterday... and he's got thick skin (figuratively and literally) :). Hope the skin issue doesn't get too bad for you guys.
My husband has had some low-grade fevers, aches and pains, some elevation of blood pressure, but nothing too drastic. The hardest part so far, like you said, is figuring out when he should take the pills... in between meads that have to be taken with meals and the no-food stipulation with Nexavar pills, it's a challenge for sure... especially for a guy who's accustomed to nibbling little meals through the day.
Certainly takes a lot of faith to take this leap; all we can do is pray for each other. It'll be at least another month or more before imaging gets done again, and it's hard not to have mixed feelings about that... looking forward to it and dreading it all at the same time.
I should mention, Peggy, I used to come to the forum fairly regularly, but am finding this new format too much eyestrain and hard to navigate, so feel free to "Send a Message" to me personally if you'd like to get in touch and you don't see me around often. Keep in touch, ok? Take care.
Yes, you are right about the new format, I became lost when I looked at it and wondered what happened to the simple format.
I had been busy seeing to my husband, he started or already starting to have skin issues and blood pressure problems. His Bp ran high over the weekend to the point I called the on-call nurse. He was having a lot of pain with his left hip, which affected blood pressure. Nurse wanted him to go to ER, but he wouldn't hear of it, so I constantly monitor it through out the weekend, he rested pretty much on Sunday, I wouldn't let him go anywhere.
On Monday I called primary physician, recommended increase Bp medication and oxycodone for pain. Neither one I like, but he will try it.
He been less tired here lately, he was able to stay up to watch movies and not fall asleep during movie, especially on a work night.
Thanks for the tip on lotions to use for his skin. I will purchase them soon.
Like you, looking forward to the new imagining and then again not. He is getting a bone scan on his hip tomorrow to see what is going on with it. I hope it is just arthitritis and nothing else.
Thanks for keeping in touch and giving me helpful tips and product selections. This truly helps, otherwise, I would be buying everything under the sun to help him. Already spent a lot of money for various things.
He is planning for the future, and that we should. At times, I wonder how far ahead to plan, you know..... I will remain positive and prayers helps a lot. I do know, we are not taking each other for granted anymore. I just want to keep seeing him each day and knowing he is still my husband, whom I
love very much.
Hope things are well with you and that you are taking care of yourself. things can get to be too much at times, but we focus on our love ones and tend to neglect ourselves. They need us, so hopefully we can persevere with God's help.
Take care, Peggy
I hope your husband's BP has improved...and that his bone scan went well... hopefully his pain was nothing serious and is getting better. It does seem like everyone's a little different on this Nexavar.
My husband did ok body wise until about middle of this week, but he's been having lots of back and muscle pain. He's been taking a couple of tylenol in the pm, but it's been a minimal help. His doc suggested Tramadol as another option, but I'm hesitant... we'll see how thing go the next few days.
Take care of yourself too. May God bless you and your husband with many good days ahead. Stay well. ~eureka
My husband's bone scan went well and results was negative for metatasis. Blood pressure so so...but much better than before. Left hip and leg pain still un-explained; doctor seem to think it is the Nexavar causing this problem, but he was having the problem prior to starting Nexavar.
Today, he was feeling a little nausea, he usually take medication Nexavar everyday at 5am on an empty stomach then eat an hour later. He had a bowl of cereal with regular 2% milk. I wonder if the dairy affective is stomach. I usually prepare a protein diet for him of mornings.
He has gone to get his weekly blood test today, he only has basically one good vein to obtain blood, they are wearing it out and he is getting tired of it all as well as getting tire of the same old menu.
My husband was recommended Tramadol by a friend and oxycodone by his doctor, neither choice is really good, but you have to watch the tylenol because it is primarily metabolized by the liver and can cause further liver issues. I would try Tramadol over the tylenol. My husband had been taking ibuprofen which can lower blood platelet count, not suggested. Not to many options in the way of pain medications. Drinking plenty of fresh pure water with lemon and getting plenty of rest can help.
Take care, continue to keep the faith and pray for their well-being. I know if he hurts......, I hurt, so we are in this together all the way. God Bless, Peggy
I've very glad that your husband's bone scan was clear. One less thing to have to worry about!
My husband developed some pretty serious pain and nausea this past weekend, couldn't even move around or eat, enough that he decided it was time for some helper drugs. They prescribed him Compazine for the nausea, which did wonders, and oxycodone for pain, so at least he can sleep and be comfortable, and move around without agony.
Definitely use caution with the ibuprofen... probably ok if his platelets are holding, but not good if they go below the 90,000 ... definitely no NSAIDs at that point... hopefully his blood work results are holding out ok. My husband did weekly labs the last two years, and they definitely started running out of veins...at least he's on a bi-weekly schedule now.
Best wishes to you and hubby... keeping you both in my prayers. ~eureka
I am glad those drugs helped with nausea and pain. My husband was prescribed the same drugs for comfort.
Lab results came back with platelet count at 53000 from less than a month ago at 58000. I am really concern about the levels continuing to drop, wonder if something can be done if he should need surgery or injure himself in any way. His spleen is eating the platelets and surgery is not an option. He stopped taking Ibuprofen and started on oxycodone, no nausea as yet. Blood pressure still elevated, doctor prescribed Metoprolol Succ ER 25mg in addition to Novasc 5mg. Hope this keeps Bp close to normal.
We take our trip this week end to Cancer Treatment Center of America in Zion,ILL for MRI scans to see if he is responding to treatment. Lets pray that he is doing well on Nexavar.
I am still searching for new options for this disease, it was stated that there is not enough funding and interest in this disease. You never see or hear about WALK FOR LIVER DISEASE or any other fund raising events for research. Cancer Treatment Center of America did not even have a color ribbon representing the cause to fight primary liver cancer like they do for Breast Cancer and other cancers.
I hope this is not it for him and new discoveries in a way of naturapathic can help. I did hear about Live Liver Donors for liver cancer transplants. Let me know if you have heard about this.
Take care and God Bless, may each day bring brightness and hope for the future to us all. Peggy
I hope your trip to CTCA was a good one... I'm praying for good results for your husband.
My husband took metoprolol for over a year, and actually got switched to nadolol, which had the additional benefit of lowering portal hypertension along with cardiac hypertension, and he's done very well on it. Might be worth asking his docs about it.
Definitely better oxy than the Ibuprofen if his platelets are in the 50s. My husband did ok with platelets in the 50s for over a year, except for a bad nosebleed that went on for days. Rest assured, if low platelets become a life-threatening issue or there is need for surgery, platelet transfusion is a possible intervention, very much like blood transfusion.
The *lack of interest* in this country for this disease is I think largely due to it's infrequency here. In other countries where it's the #1 or #2 killer, there is lots more research, knowledge, and public awareness, but it's still a fairly rare and "not well-known" condition in the States. There actually is a ribbon for primary HCC, it's green, btw... I actually got one from my husband's Transplantation Center when he was still considered "eligible."
Live Liver Donor is growing in capacity but is available only at a number of limited TP Centers because of the technical/medical/ethical demands; there have been situations, especially in pediatrics, where adults can donate a piece of their liver to someone for transplantation. However, it is very limited in availability, and the requirements are very stringent, and it again is only considered as an option if the recipient is within "Milan Criteria," or eligible for Transplant using cadaver-TP guidelines (less than 3 tumors, etc.)
Wishing you and your hubby all the best... keep me posted. ~eureka
Hi Eureka, Thanks for your response. Feeling a little down today, just returned from CTCA and the new suggestion is to add another oral chemo drug called Xeloda or can be given infusion IV, my husband chose the oral method; multiple tumors seen on MRI scan, but one near the kidney inside the liver is of great concern. It has almost doubled in size plus his platelet count keeps dropping, now it is at 51,000 from 53,000 just a week ago. Docs keep saying there is nothing they can prescribe to maintain platelet count, they are just going to watch the tumors and platelet count and see him in six weeks to see if new drug is more effective with the Nexavar. Docs also said primary liver cancer patients do poorly with chemo drugs, my husband's reaction was none. I am trying to get him to take more of an homopathic agressive approach, but he is really not listening. I don't know what to do or who to believe in the Medical world. I feel with each day, time is running out and I will be burying him in six months or less. The radiologist show us the scans after I kept requesting it from the oncologist three times when we were there. He mentioned a treatment called IR, which is inserting tiny beads of material that will shrink the larger tumor, oncologist did not mention this approach, maybe related to low platelet count, afraid he would bleed out. They are going to wait until it is too too late for anything to help, loosing all hope with this. My husband is just going on with his day as usual, no real conversation between us regarding this. I feel like I am the only one fighting for his life.
Hope fully his chemo is a short trement. Because a doc I met sugested I take it for 2 years or more to treat Leukemia and some sort of cancerous growth in my legs spine admin which caused me to go into a coma and drained my bone marrow. I decieded not to finish the treatment. I am fine so far. I have to warn him though the side effects to some kinds of chemo can be harsh. To the point of sterility vomiting and other issues. If it has side effects of sterility. He could bank his sperm. I wish to say I hope he gets well and has a better chance of being cured then I do.
Sorry to hear that the news wasn't good and that you're feeling down. Try not to worry about the platelets... being in the 50s is not too bad, he should be OK as long as he doesn't get injured... spontaneous bleeding isn't usually a concern unless platelets are in the 20s. Unless your husband is having surgery or a procedure, platelets in the 50s shouldn't need anything done per se... hubby just needs to be extra careful.
The xeloda has been shown to have some benefit for some people, so it's worth a shot if they're offering it and your husband is willing to try it. The IR (interventional radiology) procedure is also fairly new science... most HCC treatments are. The glass beads (they're probably talking about Yttrium 90) has also had some good results in slowing/killing tumors, but again, different success rates for different folks. If your husband wants to seriously pursue that, they would probably need to watch him closely, but my husband had three IR procedures (called TACE) with platelets in the 50s, and he did ok. I will caution, you though, IR procedures are a lot more invasive and harder on the body than systemic Nexavar and has more serious risks.
It can be very frustrating being the caregiver; I've learned over the years that what I would do as a patient, or what I think my husband should be doing, is often times different from what he wants or is willing to do. We certainly encourage them to pursue treatment and every possibility in the hopes of winning the battle against this awful cancer, but you also have to face the reality that your husband has aggressive disease and may just want to live in the moment and not face the high mortality rate... quality of life is important to weigh against quantity too. I pray that your husband may stay well for a long time, but you have to prepare for the possibility that things could take a turn for the worse fairly quickly too. It's certainly important to focus on fighting the disease, but it's also very important to focus on living too.
I understand what you mean about feeling alone, the only one fighting... there are just going to be times when you feel that way, and it's OK. You just have to do what you feel in your heart is right, stay strong, and you have to balance that with what your husband is willing to do and tolerate. In the end, it's his body and his pain and his disease... we can encourage, and advocate, and help all we can and all we want, but in the end, all we can do is love them.
Don't lose hope, Peggy... just take every day that's a good one as a gift from God, have faith in Him, and keep following your heart and take time to find joy out of the darkness. So many people lose their spouses in the blink of an eye... at least we've been told that angels may be arriving soon for them and we can try to make the most of the time. My prayers are with you and your husband. A great big hug to you... take care of yourself. ~eureka
This may be old news to you both, but have you seen this article?
Liver Cancer Cells Coaxed To Commit Suicide By Common Anti-Inflammatory
Article Date: 17 May 2011 - 4:00 PDT
The anti-inflammatory drug celecoxib, known by the brand name Celebrex, triggers liver cancer cell death by reacting with a protein in a way that makes those cells commit suicide, according to a new study.
Researchers also found that the combination of celecoxib with each of two chemotherapy drugs killed more liver cancer cells in culture, making those combinations more effective than either drug on its own.
Thank you for providing that link and information; certainly looks as though it might hold some promise for better options in the future... any information and research that adds to the line of current therapies available for HCC is more than welcome!
I did have a brief discussion with my husband's TP doc about her thoughts on adding Celebrex and any possible benefit, but she had serious concerns about associated cardiac and stroke complications associated with it. She did say, however, that her expectation was that it would go into clinical trials next since thus far it has only been used in the context of a laboratory and in cell-line culture.
Appreciate the post. ~eureka