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  • Post
    robbier
    Participant

      Back in March of this year, I had a PET/CT which showed hree hot spots.  Three surgery later, a trip to MD. Anderson.  Had a Pet/ct scan in July that showed two area of concern.  On in the abdomen and one in the mid right shaft of the femur.  Had a bone scan August 10.  Which showed no evidence of disease at that time.  Cancer Doctor thought I was in remission and didn't need treatment.  Around the last week of August I went to see my General Health Care Doctor.  I felt like I had a pulled groin muscle.  He gave me muscle relaxer, two weeks went by and still in pain.  By his time I was running a low grade fever.  Went back to Dr. He found blood in my urine, and a appointment for a Urologist for Oct 13.  Was sent back to Cancer doctor He sentme to see a Bone doctor.  Saw Dr. Harcout around Sept 16th.  He thought at this time, I had pulled muscles 7,8 in the left left and needed physical therpy.  The pain so severe I couldn't drive, and couldn't walk.  Got a friend of mine to take me to Hospital.  I finally got admited and they did a CT can with and without contrast, and MRI.  Monday ( Oct 6, 2014) the Cancer doctor said there was lesions seen in the abdomen towards he pelvic area, and they found a L4 fracture of  the spine.  Released from Hospital Oct 7th.  Came home, wednesday Oct 8th was sent to see Dr. Hixson for possible radation therpy to the spine.  Dr. Hixson, decided I need to go back to th hospital.  Was re-admitted to Hosptal, in Mobile, Al.  More test, More MRI, of spine, and CT scans with and wothout contrast.  They found changes to brain, the cancer is not in my brain, just changes, those lesions, and possible cancer in the spine.  The first thing they did was pain control.  The specialist said he didn't think they could operate on the L4 because they thought there was evidenve of disease.  Was release Oct 10th from ospital with pain meds and pain hopefully getting under control.  Went back and saw Dr. Hixson after getting out of hospital on Oct 10th.  At that time, I was fitted with a face mask, and lines on my belly.  I just finsihed my first week of radation treatments, for that L4  spine.  They decided first to treat me with radation for the 3 weeks, so I have two more weeks to go.  Then I will be given two weeks to three weeks of rest. Then My cancer doctor is talking about a Braf inhibotor ,two differnt kinds of chemo pills is what I call them.  He wants to see if the these wok, then He said Yervoy.  I still believe God is in control of my life.  I know I have a road ahead of me, doing the best I know how to stay postive in my situation.  Thank all of you for your prayers at this time.

      Robbie

    Viewing 14 reply threads
    • Replies
        Bubbles
        Participant

          Oh, Robbie. So sorry you are dealing with all that. Sounds like you doc is thinking of a BRAF/MEK combo which can work very well. I wish you my best. Hang in there! Celeste

          Bubbles
          Participant

            Oh, Robbie. So sorry you are dealing with all that. Sounds like you doc is thinking of a BRAF/MEK combo which can work very well. I wish you my best. Hang in there! Celeste

            Bubbles
            Participant

              Oh, Robbie. So sorry you are dealing with all that. Sounds like you doc is thinking of a BRAF/MEK combo which can work very well. I wish you my best. Hang in there! Celeste

              arthurjedi007
              Participant

                Also Robbie for the fracture in that L4 you might want to ask the doc about xgeva. It is a shot I get every 4 weeks for the fractures in my bones. There is also a stronger version of xgeva called zometa administered like Yervoy. I'm not sure of the frequency of it because I only had one dose of it. These medicines are supposed to strengthen the bones especially when dealing with fractures. Also radiation to the bone I was told weakens the bones so xgeva is a must for me. I don't believe you can have it while doing radiation but right after.

                For the pills like Celeste said that sounds like the Tafinlar/Mekenist. They were FDA approved a couple years ago but since they work so much better together they finally got FDA approved as a combo last January. I was on them about 10 weeks and the side affects for me was very mild. Just being careful with being in the sunlight seems to be the one common side affect pretty much everyone has while on a BRAF med. The rest of the side affects vary from person to person. This combo has been proven to work very well for a lot of people so hopefully it will for you.

                For pain I've found heating pads seems to numb the area especially for my bones and gives some relief. I got 30 someodd tumors that involve the bone and several fractures. Sometimes a ice pack helps too.

                Good luck.

                Artie

                  arthurjedi007
                  Participant

                    Oh. I forgot to mention you can do Yervoy while doing raditation if you want to ask your docs about that. There is some anecdotal evidence that seems to indicate immunotherapies like Yervoy and radiation work better together than they do seperately. It might be too late since you are already a third through the radiation but just a thought.

                    Artie

                    arthurjedi007
                    Participant

                      Oh. I forgot to mention you can do Yervoy while doing raditation if you want to ask your docs about that. There is some anecdotal evidence that seems to indicate immunotherapies like Yervoy and radiation work better together than they do seperately. It might be too late since you are already a third through the radiation but just a thought.

                      Artie

                      tschmith
                      Participant

                        I was getting Xgeva shots, too, and I really thought they helped me a lot.  I have a fracture in the L2.

                        Hang in there, Robbie.  I'll keep you in my prayers.

                        Terrie

                        tschmith
                        Participant

                          I was getting Xgeva shots, too, and I really thought they helped me a lot.  I have a fracture in the L2.

                          Hang in there, Robbie.  I'll keep you in my prayers.

                          Terrie

                          tschmith
                          Participant

                            I was getting Xgeva shots, too, and I really thought they helped me a lot.  I have a fracture in the L2.

                            Hang in there, Robbie.  I'll keep you in my prayers.

                            Terrie

                            arthurjedi007
                            Participant

                              Oh. I forgot to mention you can do Yervoy while doing raditation if you want to ask your docs about that. There is some anecdotal evidence that seems to indicate immunotherapies like Yervoy and radiation work better together than they do seperately. It might be too late since you are already a third through the radiation but just a thought.

                              Artie

                            arthurjedi007
                            Participant

                              Also Robbie for the fracture in that L4 you might want to ask the doc about xgeva. It is a shot I get every 4 weeks for the fractures in my bones. There is also a stronger version of xgeva called zometa administered like Yervoy. I'm not sure of the frequency of it because I only had one dose of it. These medicines are supposed to strengthen the bones especially when dealing with fractures. Also radiation to the bone I was told weakens the bones so xgeva is a must for me. I don't believe you can have it while doing radiation but right after.

                              For the pills like Celeste said that sounds like the Tafinlar/Mekenist. They were FDA approved a couple years ago but since they work so much better together they finally got FDA approved as a combo last January. I was on them about 10 weeks and the side affects for me was very mild. Just being careful with being in the sunlight seems to be the one common side affect pretty much everyone has while on a BRAF med. The rest of the side affects vary from person to person. This combo has been proven to work very well for a lot of people so hopefully it will for you.

                              For pain I've found heating pads seems to numb the area especially for my bones and gives some relief. I got 30 someodd tumors that involve the bone and several fractures. Sometimes a ice pack helps too.

                              Good luck.

                              Artie

                              arthurjedi007
                              Participant

                                Also Robbie for the fracture in that L4 you might want to ask the doc about xgeva. It is a shot I get every 4 weeks for the fractures in my bones. There is also a stronger version of xgeva called zometa administered like Yervoy. I'm not sure of the frequency of it because I only had one dose of it. These medicines are supposed to strengthen the bones especially when dealing with fractures. Also radiation to the bone I was told weakens the bones so xgeva is a must for me. I don't believe you can have it while doing radiation but right after.

                                For the pills like Celeste said that sounds like the Tafinlar/Mekenist. They were FDA approved a couple years ago but since they work so much better together they finally got FDA approved as a combo last January. I was on them about 10 weeks and the side affects for me was very mild. Just being careful with being in the sunlight seems to be the one common side affect pretty much everyone has while on a BRAF med. The rest of the side affects vary from person to person. This combo has been proven to work very well for a lot of people so hopefully it will for you.

                                For pain I've found heating pads seems to numb the area especially for my bones and gives some relief. I got 30 someodd tumors that involve the bone and several fractures. Sometimes a ice pack helps too.

                                Good luck.

                                Artie

                                Girl52
                                Participant

                                  Robbie: Hang in there! My prayers going up for health and strength and comfort for you. I also believe that you are in God's hand, and you have people here thinking of you.

                                  Girl52
                                  Participant

                                    Robbie: Hang in there! My prayers going up for health and strength and comfort for you. I also believe that you are in God's hand, and you have people here thinking of you.

                                    Girl52
                                    Participant

                                      Robbie: Hang in there! My prayers going up for health and strength and comfort for you. I also believe that you are in God's hand, and you have people here thinking of you.

                                      liberty04281
                                      Participant
                                        How Robbier, how are you doing?
                                        Did you have any treatment?
                                        liberty04281
                                        Participant
                                          How Robbier, how are you doing?
                                          Did you have any treatment?
                                          liberty04281
                                          Participant
                                            How Robbier, how are you doing?
                                            Did you have any treatment?
                                            liberty04281
                                            Participant
                                              How Robbier, how are you doing?
                                              Did you have any treatment?
                                              liberty04281
                                              Participant
                                                How Robbier, how are you doing?
                                                Did you have any treatment?
                                                liberty04281
                                                Participant
                                                  How Robbier, how are you doing?
                                                  Did you have any treatment?
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