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January 30, 2015 at 10:42 am #22340
It seems as if every time we get used to something – something else happens and we need to take more decision.
Michael finished the 4th portion of Yervoy yesterday. It was not easy. His hemoglobin and iron dropped down to the stage where he needed to get blood, he became very week and could hardly do anything – I had to help him with all basic activity .The diarreha was pretty basd although medication helped and we coped with it, hoping that the CT scan in 2 weeks will show some good results. hOWEVER, ON Sunday we revceived the reult from the brain MRI 6 weekd after WBR and it is not good. For making final decision on treatment he had another MRI on Wedensday and result showed some changes fro mthe one that made 10 days before. There are 8 mets in both side of the brain and while few seemd to be verey small or even almost gone – other have grown. So, on Wedensday Michael will go through radiochirogy in trying to work on all mets together with one very strong radiation for all the spot. Something which is I think, a new way of the Gama knife. We are afraid that this might also point to the fact that the Yervoy was not effective, although seems that few spot disappear.
It has been a veryu difficult month for us, and I took a week off work to be with him through all the thing next week, hoping it will be effective and will give us some quite period since Michael (and myself) are really exhausted from the events that keep hapening all the time
TammieJanuary 30, 2015 at 10:56 am #66237buffcodyParticipant
I am sorry Michael and you are going through all of this and are not finding much hope so far in the results from the difficult treatments he has had. I would not give up hope in the effectiveness of the Yervoy. The disappearance and reduction of size of at least a few of the brain tumors may be an indication it has been working. It is also still early to make any final judgement on the Yervoy. Unfortunately but hopefully too, it may be weeks before it really kicks in. Your oncologist has probably told you that. It is certainly something you should talk to him about because the lack of immediate progress is, of course, disturbing to both of you. He may be able to offer you some professional encouragement about the current state of affairs. I hope so.January 30, 2015 at 11:55 am #66238hass71Participant your situation looks a lot like mine, we’ll start in one day the anti PD1 keytruda after failing all other treatments, the best thing to do is to pray for him like i’m doing, and give him your best encouragement to fight more and hold on to life, there are beautiful things to do.
psychology is very useful in this level, i’m trying my best to make my wife happy in this situation maybe she’ll respond more to treatment.
best of luckJanuary 30, 2015 at 3:06 pm #66239
I would like to than yo utwo for your encouraging response. Michael and me are professional in the area of positive psychology and this is what keeps me during the last 2 yearts, also I am writing a diary about living with the sickness. It is not easy and I find the forum as the most hhelpfull one in time of crisis. We keep overcoming side effect and it it easy when we see hope in the future. I think my coping style now is to take one step in a time. Right now just helping Michael to feel better and cope with next week challenges of the strong radiation. Than we will deal with the result of the Yervoy and think next.
Good luck to all of us – we deserve it.TammieJanuary 30, 2015 at 11:45 pm #66240NikiParticipant
I too had brain mets that did not seem to respond to Yervoy. I have had 38 total in the nearly 2 years since I was diagnosed. I’ve had 9 rounds of gamma knife, some of them only 4-5 weeks apart. One round was to treat 9 tumors scattered all over different brain regions… including one in the medulla… which is a baaaaad place for metastasis. High dose radiation seems to be more effective with melanoma than WBRT, particularly once the lesions are of a visible size on an MRI (even as small as 1 mm).
Does your husband have a BRAF mutation? Inhibitor drugs are pretty effective at controlling brain metastasis for most people. And is PD-1 available as an option? PD-1 has shown better brain response than Yervoy. My last MRI showed no new tumors… which is a really big deal for me. I have MRI’s every 4 weeks, and I have only had 3 in the last two years that showed no new mets. I have another MRI on Monday. My oncologists and I are all hoping that the PD-1 will be promising in keeping the brain controlled.
The “good news” for you and your husband, is that there are still further options to help control the brain. I know how scary it can be to go for MRI results. More times than not, it has been bad news. But as someone else already mentioned, a positive attitude can make a world of difference. Stress will lower the immune system. If we can’t smile and laugh, we distract and enjoy life until we forget its horrible realities. Best wishes to you and your husband. I can’t imagine being the care giver. Being the patient seems to be the easier role to handle.January 31, 2015 at 4:58 am #66241hass71Participant
You’re really amazing, going through all this and still giving us advices and lifting our spirits, and that show the high strength that you have.
Good luckJanuary 31, 2015 at 6:22 am #66242
Thank you for responding, and hope you all be fine. Knowing that others have gone through this is really encouraging and I find support in this forum. We will know more in about a month – after a new ct scan to see the effect of IPI, and after looking at the result of the the focuse brain radiation nect week. So – we pray. I am doing my best to keep life as normal helping Michael to find meaning in life being around our children and granchildren. Lucky enough I get lots of support fro mwork so I am with him a lot and of course – in every check ups, treatment or doctors visiting. We just hope. keytruda has been approved in Israel just lately so if needed , we could get it. I just hope IPI will be found efrective so at least Michael will feel all this difficult time has not been for nothing. So, like always – time will tell. We decided if things goes right to re-married in May, and renewing our promise to each other – need to find some goals to work through! TammieJanuary 31, 2015 at 7:56 am #66243 I forgot to answer the questions: Yes, Michael is Braf Positive and was diagnosed on June 2013. Was on Zelboraf for 15 months when Mets first appeared in his brain. CT showed 4 of them but we were told that there are probably many more. He did WBR and right after it IPI. MRI now shows 8 mets but probably not new – just that MRI is more sensetive than CT. So – we still need to see how IPI effected the body mets and brain mets will be treated by radiochirogy on Wedensday. As of beibng a care giver – I will do everything for him and it breaks my heart to see how much he suffers and is not the same person as of 2 years ago. We do hope for better future. We are luchy to be treated by great doctors whom we trust and know they are really expert. Tammie
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