iowagirl
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I had an appt for Thursday this week and got a phone call this afternoon that it has been canceled. Fortunately we didn’t start out on the 1060 mile , two day trip. Phone calls to MD Anderson get a recording that they are closed due to water flooding and impassable roads. My phone message (which was mechanical…not a real person) indicated that they would call after the Labor day holiday to reschedule. I couldn’t tell if the clinic might be open on Friday or not. Unfortuantely, there is a LOT of debris on roads that have been covered with water …a LOT of it…and it will take quite a while to clear all of that including the mud to make the roads safe again. Then, some will need repaired because of washouts. To top that, if possible, there is a new low pressure in the Gulf that probably won’t be a hurricane, but is expected to dump a lot more water over the already flooded areas. Insult to injury!. I’m hoping to get an appt for the week AFTER the week of Labor Day…..to be on the safer side…..but I hate to wait that long……my blood counts are dropping a lot and I don’t know how fast the leukemia is progressing. It’s really scary.
Julie
Kathy,
Wow…..I can’t imagine what went through your head during the discussion phase as to what to do . Thank goodness you had a doctor willing to pursue the brain mets and go at it until they were done. Hang in there girl…..you’ve got good reasons to stick with this…..that 8 year old and two 6 year olds. Will be thinking of you.
JulieBrigette,
I’ve not had the procedure, but It sounds like there has been some success and there’s no reason not to believe that another procedure with RACE could stop both of the tumorsin their tracks. Hang in there kiddo.
Julie
I have had considerable dealings with low platelets because I developed a blood cancer from my bile duct chemo.
It was explained to me that normally, platelets are not transfused until they get down to 15K (in my case). That may or may not be different with low platelets from the Oxiliaplatin. Anyway, the reason for waiting until 15K is that at that point, it starts to become too low. They don’t usually transfuse before 15K because platelets only last about 4-7 days in the body. However, they “can” rebound fairly fast. The only time I got a platelet transfusion was when I had a port put in and my platelets were too low for good clotting….and one time when the platelets dropped below 15K.
I would certainly raise the question of a platelet transfusion though….and also your concerns of not being able to have her do chemo, which was obviously helping. You deserve some answers…and more than she’s just having chemo pain.
Julie
Thank you, Darla, for the story about your husband at the graduation party. I do not doubt for a moment that the boy had some feeling about your husband.
My little grandsons help a lot to get me through things….and esp the 6 year old, who is very bonded with me and vice versa. (He has said several time, “Grammy, you know ou are my favorite.” Fortunately, he is a very huggy type kid…..and always comes immediately to me for some cuddle time during visits before he starts playing. And…he hates to leave….it makes him sad, he says, because he misses us so much. In his perfect world, I think his parents, he and his brother, and both sets of grandparents woud all live in the same house.
)))))).Furniture shopping tomorrow….some retail therapy! I may not buy anything….but it will be fun looking.
Julie
Catherine…..thank you…..I am trying very hard to focus on living and grandkids….but of course, it’s hard not to have that little wince once in a while. Tonight, my 6 year old grandson said, “Grammy, I will love you foreer.” I told him that I’d love HIM for ever and a day. Not too long ago, he suddenly said he was sad…and when I asked him why, he said he realized that when he is grown up, I will be dead. It was all I could do to hold myself together. I told him I hoped that was a very long time. He knows that grammy goes to the doctor quite often, but he has never been told the seriousness of my illness. We are very, very close….and it’s so hard.
Marion,
I have found that “lung nodules” have caused a lot of wringing of hands among the doctors, but esp if there is a recurrence elsewhere. Then, they seem to get overly anxious about the nodules.
YES< YES< YES....please....I would be very interested to share the bone met treatment together. The NA I talked with at Mayo seemed to indicate one zap of radiation on this thing since it is so very small....IF it tuens out to look more like a met than arthritis. How large is the area in question on your bone? I also forgot which bone you said it was on/in. (Will have to go back and read that). I would imagine that the larger it is, the more sessions. But, I've heard of remarkable success with the bone mets.....and lasting problems rarely occur. Something you might find interesting….was that the Mayo NP discussed my scan findings with one of the staff oncologists (mine was not in that day) and the idea of doing a PET scan was discussed. However, the oncologist decided that with the MDS….which is basically one kind of cancer of the bone marrow (that can transition into AML…a leukemia) ….all of my bones would probably light up llike a Christmas tree….including my spine. LOL. So, it would basically be useless. I’m glad they thought of that before ordering one. LOL. Good catch. They were trying to figure out how to decide if it might be a met other than waiting and watching because it was too small right now for a biopsy. It hink it would have to grow a LOT to be able to biopsy it. As I remember from a lung nodule that my husband had once…..his was 1 cm and as such, barely big enough to get…..which the Dr was finally able to do after numerous pokes at it…..but in the process they collapsed his lung. It’s always better to have a decent target to hit. Question?…..did they bioopsy this bone met you have….or do a PET? Thank you for reminding me…..about not thinking too much until the “clear answers are presented”. I’m going to try very hard to keep busy (as much as my toosh will allow…as for the next 5-7 days it is going to feel like I got kicked in the rear by a cow). Of course, you know that includes time with my little grandboys…..and having just come back from the 3 day trip at Mayo, there’s a lot to put away…throw away….all the excess papers, etc. And….on Saturday, I’m hoping to get my husband to take me to a furniture store a couple hours away.
. When the going gets tough, the tough go shopping. )))). Retail therapy. We may not buy anything…but it will be fun (at least for ME)…..husband maybe not so much. LOL.Love you,
JulieMarion….am home from the bone marrow biopsy and not up to reading too much, so will reserve this for tomorrow. I want to print out all the information to take with me to the oncologist and hematologist….esp the latter. There is a drug soon to be approved for MDS (like maybe next month) . Has been trialed at least at MD Anderson. It is specifically for a certain mutation and has had excellent results. It’s for people whose MDS has transitioned to AML (Acute Myeloid Leukemia)…..esp if they can not do a bone marrow transplant. I’m looking forwward to reading the stuff you posted….but energy level is pretty low tonight……the sedation was “wonderful”…..no pain….asleep in 5 seconds….awake instantly…whole procedure about 10 minutes. They were fabulous at Mayo. The guy who did mine said that they do about 5000 Bone Marrow Biopsies per year there. WOW!!! Of course, that means, sadly, that there are that many very sick people that they see. Sobering thought.
Julie
Marion, I am sure others will be along to wish you well and offer support as they can. For me…..you have l been there like a light in the darkness when things were very bad. You’ve helped me deal with more than the disease, but the anxiety and the bad doctors. I don’t know WHAT I can do to help you, my friend, but I am here in whatever capacity I can be…including researching treatments. (I’m a good “finder”). I know you’ll have excellent doctors looking out for you and I hope that even though the cancer isn’t CC, you will please feel comfortable to keep us updated on the boards as to how things are going, what your treatment plan will be and where. We care about you very deeply, Marion. I just wanted you to know.
Love, your friend, Julie
Fantastic news. I hope to continue to hear more about this trial and results….and your continued success. We all need to hear first hand stories like this.
Julie
Hi Tilly and Welcome. Thank you for outlining your husband’s diagnosis and treatment. You did an excellent job and many will come after you (unfortunately) who will benefit from your post. I was diagnosed in Feb of 2014, with intrahepatic CC and had a resection of my liver, so I am not familiar with your husband’s surgery very much, but I am aware of Whipples. Glad to hear that he recovered so well. I am currently NED…again as of last August, after having a second resection for a recurrence after about two years and another recurrence 7 months later (August). I’m currently falso fighting MDS (as a result of the adjuvant chemo….a rare side effect….but I am in remission from that, though we don’t know for how long…it will eventually fail). There have been many dark days since 2014….but I am enjoying my life as God gives it to me…..and celebrating my grandon’s 6th birthday this weekend. I use to be a cake decorator….so SI will be once again making him a special cake….this year…a tornado cake. LOL He LOVES weather stuff! Last year was the Saturn V rocket cake ….because he was into space related things and rocketry. There IS life after CC. I don’t know how long the MDS and CC are going to let me stay around., but I’m not going to miss a moment God gives. Hang in there.
I heard about Kris’ passing on Facebook. She was one of my heros from the start. Fly high with the angels, dear Kris.
Julie
Thank you, Marion. This is one of my mutations and one for someone else I know. I’ll share the info with her. Julie
While my age was certainly less than your mom’s age, my surgeon told me that the type II , insulin dependent diabetes I had would add a risk factor to my resection, but the risk was very minimal,,….like part of one percent. I’m not sure what macular degeneration would have to do with it at all. Her age?…..maybe because it IS a big surgery. But, people go through heart surgeries at her age all the time it seems.
I feel like Marion, that a sit down with a surgeon is in order to hear first hand just what the concerns are before discounting surgery altogether, but just to know WHY from someone in the position to know first hand. My firsst oncologist was amazed when he told me that the surgeon was even going to do my resection laporacopically. He said, “I didn’t know they could even DO that.” In your position, I would set up a consult with a surgeon.
Meanwhile, the stent placement can help her comfort and health while you and she are figuring out what there is to be done.
Julie
