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July 29, 2013 at 11:49 am #21478
Hello, I am new to this issue. My husband has recently been diagnosed with b-raf and started zelboraf treatment.We live in Israel. he is on it for 3 weeks and having very difficult time to adjust. After the first 10 days of developing all range of side effects they took him off medication for 4 days and than gradually started again. As he reached again 4 pills twice a day he developed high fever and they reduced it to 3×3. He still runs high fever. We wonder is it frequent, how long it takes to adjust and will he be able to over come the symptoms and start functioning in a normal way again
Thank you for the information I will look for itJuly 29, 2013 at 11:54 am #61984Catherine PooleKeymaster
Welcome to our forum. Many folks do experience issues with Zelboraf as you describe. Reducing dosage and taking a break can help. Sometimes other meds are given too. I would stay on top of it with the doctors about his side effects. You can also reach out to http://www.zelboraf.comfor assistance. Actually go to: http://www.zelboraf.com/patient/treatment/support/index.html
They have oncology nurses answering queries 24/7, and hopefully from Israel you can call there. Let us know how things are going.July 29, 2013 at 5:34 pm #61985abdormaParticipant
My husband also ran high fevers while on Zelboraf and was quite miserable during that time as he felt like he had the flu.
The good news is that they didn’t last. He ran a temperature for about two weeks where it spiked at the same time every day to about 103 F. After those two weeks, every day his temperature when it spiked was slightly lower than it had been the day before. After about 10 days, his “spiked” temperature was just slightly elevated above normal.
He also was on Zelboraf at a reduced dosage as he developed a horrible rash about a week after starting it. He was off Zel for about 10 days and then on the reduced dosage for the remainder of his time. He did not go off the drug while running the high fever.
His melanoma progressed after six months but many on this forum have had no progression and have been on it for more than a year. After the fever incident, his side effects were minimal. Good luck to you and your husband. My bet is that the fevers won’t last. So hang in there!
AnnJuly 29, 2013 at 6:40 pm #61986
Thank you – your mail is of great importance to me.
We have a very good doctor who treats us, but he is very short on words and do not share information. In addition to the shock we experience for finding out about the problem, and trying to deal with it, we are still trying to learn more, and to find our way through. What we need the most is hope and know that we have something to look for.
So – I appreciate your answer – let’s hope it will get better in few days.
TammieAugust 6, 2013 at 3:20 pm #61987
Thank you everyone for your advice. It was very difficult for my husband to see himself not functioning for the whole month where he experienced all the possible side effects. Now after a whole month of Zelboraf, and 12 days of reduced medication to 3×3 , most side effect disappeared, and the fever is getting down. All those who wrote to me to wait and after 10 days or 2 weeks it will be over – were right, and gave us goals to wait for. It is not over yet, but it is much better. My husband is ok in the mornings and can start functioning again. Fever still raises in the afternoon but not as high as before.
I have to say that knowing that others experienced similar things, and knowing that for many of you it became better was very helpful and this was the information I was missing, i feel that there are lots of things that can not uyet be answered and I need to look for solution because it is not in the literature yet, so – Thank you
TammieAugust 6, 2013 at 5:23 pm #61988
Hi Tamie – welcome to the forum – my husband has been on Zelboraf for 7 months – he has had temperature, rashes , lost all body hair, very sun sensitive, joint pains and thickening of skin on feet and hands – he also has diarrhea sometimes and changes in taste – he has remained of 8 pills a day because his side effects were bearable – they will play around with the dosage until your husband can tolerate his side effects – they tend to ease a bit at 4-8 weeks. All the best – be very careful in the sun – it only takes a few minutes without sun protection before you burn !August 6, 2013 at 6:06 pm #61989 Thank you . Actually my husband didn’t leave home for the last month because side effects were so bad. But I hope now we will start getting back to something like more normal life, and than I will start worrying about second stage – what we suppose to do once it stop working.
Actually I have lots of thoughts. He has been diagnosed – by chance. Had melanoma 11 years ago and felt wonderful since. All his tests came out very well and never thought of anything as bad as what happened.
Just because he felt something near the place of the first operation – since he insisted – they sent him to scan and we were shocked from the outcomes. He had no pain, in wonderful physical condition, blood tests were great to the point that we did not believe – when we first saw the outcomes. He has many places of melanoma and diagnosed as BRAF – but none of them (Thank’s God) is in a very important place (no brain, no liver etc). I wonder if the treatment, number of pills, life long – can be the same for every one, if previous physical position has any effect, if the age makes any difference (my husband is 72 years old and cells are growing slower at this age) and whether or not there is something to do once the Zelboraf stop being effective.
We are treated in Tel Hashumer – Ella center – but I wonder should we consult other specialists in the States – maybe those who had more clinical experience because the drug is available in Israel only since last December.I guess we are lucky to have this medication but I also think there is still a lot to learn aboutAugust 7, 2013 at 9:30 am #61990PentiumIVParticipant
You can fully trust Ella Institute team on vemurafenib (aka Zelboraf) treatment. From what I know they had Vemurafenib since 2010 and Prof. Jacob Schachter lectured at Roche on managing the patients on BRAF inhibitors. So, they obviously have some clinical experience .
P.S. A lot of immunotherapy work also goes on there.August 7, 2013 at 5:02 pm #61991
Hi, I’m new to this, was diagnosed with brain and lung mets by a routine scan in April this year. Was told I had two brain tumours, then was told I had 8 brain tumours and 2 lung. Had whole brain radiotherapy for 5 days…didn’t realise it would wipe me out for weeks. Scan showed no shrinkage but we didn’t really expect. Didnt also expect there would be a further tumour in the lung and a further 3 in the brain. Totalling 14.
Now on Zelboraf, this is my 3rd attempt. Such bad reactions to the first two attempts. Terrible rash, fever, bad eyes, lots of warts oral thrush.
Now on 3 + 3 tablets and on day 6. So far so good.
However, I do have awful muscle pain in my left arm from my wrist up all the arm into the armpit. Feels so heavy to move. Feet also hurt to walk on…heels and ball/instep. My shins feel they are going to break when i walk. all ok when im resting though.Some abdo pain also. Fast pulse etc. I’m only on day 6 and hope these will settle. Has anyone else experienced same? It may be on other parts of the forum but I struggle to navigate.
Iam on other meds but these are to counteract the Z…anti histamine, anti emetic. Also on analgesia, gastro, and Dexamethasone.
Sorry if I have gone on, but would be interested to know someone has been through the Z effects and won through.
Thank you for your time
BethAugust 7, 2013 at 6:04 pm #61992Catherine PooleKeymaster
Welcome to our forum. So sorry to hear of what you have gone through. I would definitely discuss this with your doctor, and also go to http://www.zelboraf.comand call the helpline there. It sounds like maybe your dosage needs to be cut back or you need other meds to counter the effects, but best to discuss with the health care expert.August 7, 2013 at 8:05 pm #61993 welcome Beth – sorry you are having such a bad time and welcome to the forum – My husband is on month 7 of Zelboraf – the side effects often ease in the first month or two – if the have played with the dosage already and reduced to 6 a day you will hopefully have an easing of symptoms. Unfortunately everyone is different both in what they can tolerate and in their side effect reactions. My husband had painful feet (like walking on pebbles) and joint pains and muscle pains that changes place and intensity. He has had a few warts and one carcenoma – he has lost all his body hair and most of his head hair – if you can bear it i think you will find it gets easier. All the best.August 7, 2013 at 9:22 pm #61994 Many thanks for the reply guys. Yes my muscle and joint pains move up and down my body…bizarre! I am only on day 6 though so I should be patient I guess. Can barely put my feet down to walk at times…no,problem with pain when sat or lying down.
I hope your husband has seen some shrinkage or improvement during the 7 months he has been on Z.
I will hang on in there. Thanks for the positives.
Love, BethAugust 8, 2013 at 8:59 am #61995
Hi Beth – my hubby had 30% shrinkage in the first 4-5 months – the last two months the tumours seem to be stable – hopefully this will last a while ! All the best – my hubby found that walking helped his joints and sore feet bizarrly .August 9, 2013 at 7:44 am #61996 Hi Beth,
Sorry for the difficult tome you are experiencing.
I can only share our own experience. My husband is now on the 7th week of Zelboraf. The first 6 were terrible. He developed all symptoms, had the same pain you report on, high fever, terrible rashes and could not function at all. After being off z for 4 days, and than on reduced doze to 3×3 he developed 2 weeks of very high fever.
The last 2 days fever went down and this morning he woke up as a different person, has some energy again, started doing things he hasn’t done for the last 6 weeks. So I guess it takes time for the body to get used to the medication. from what I hear from others – it takes time, so you have what to look for and meanwhile – consult your doctor on the right numbers of pills for you. It is getting better
TammieAugust 9, 2013 at 9:43 am #61997
Thank you for the replies , it’s comforting to know others have gone through this…not that I want anyone to suffer. It’s good to know it passes but I guess everyone is different.
I was tempted to stop the Z again but will hang on in there for a while longer as it does seem that most people get past this stage. Iam taking some Ibuprofen which does help with the joint inflammation, but am struggling with sleep. I hope your husbands shrinkage and stability in symptoms continue. Many positive thoughts being sent to you all. Thank you. Beth
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