July 29, 2017 at 2:41 am #95374
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.
JulieJuly 28, 2017 at 3:05 am #95373darlaSpectator
Out of the mouths of babes. That tugs at my heart. Julie, I am hoping that it will be a long time too. Children do seem to be able to sense these things, even when they have not been told.
Short story. Before Jim was even diagnosed we were at a graduation party for our niece. They have a neighbor who has a young boy who is severely both mentally and physically challenged.. That darling little boy pulled himself up next to Jim, leaned into him and kept patting his leg as if to comfort him. Although at the time we had no idea that he was even sick. His symptoms started a few weeks later. He died 2 months after that. I still can vividly see that little guy with Jim. It was like he was drawn to him and was meant to be there for him.
Enjoy those little ones and live your life one day at a time. Take care dear lady and have fun furniture shopping.
DarlaJuly 28, 2017 at 2:37 am #95372
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.July 27, 2017 at 11:19 am #95371middlesister1Moderator
You are a fighter, but I am so sorry you aren’t able to just revel in the great report on the CC and focus on living and grandkids. I hope that in the near future, you get that luxury.
Love and hugs are coming your way-
CatherineJuly 27, 2017 at 2:30 am #95370
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.
JulieJuly 26, 2017 at 8:55 pm #95369marionsModerator
Julie….possible recurrence. This is a good example of specialists difference of opinion and how important it is to have a good “team” by your side. Yeah on the good outcome.
Treatment or not for Lung nodules can be confusing, but – as so in your case – most often they are watched only for changes in size. Great news.
Spine… Radiation can take care of it. I am scheduled for spinal radiation this coming Monday. Not yet sure as to how many cycles I am scheduled for. Perhaps we can share experiences.
MDS – I am learning from you. I want to believe there is some reason other than recurrence of the currently seen nodule. Oh, these rare diseases….always a puzzle.
One thing I learned since the short time of my diagnosis with a different cancer is to not think too much until clear answers are presented. Already you have conquered so much that I feel quite hopeful for this to turn out well
Regarding CCA: the best of all – no evidence of recurrence. Can’t get much better than that.
Tidal wave of good wishes heading your way.
MarionJuly 26, 2017 at 6:32 pm #95368mbachiniModerator
I just want you to know you are in my thoughts and prayers. Going to hold on to the good news of No Evidence of CC……all my best.
MelindaJuly 26, 2017 at 1:41 pm #95367lainySpectator
Julie, my little engine that could! I am hoping and praying that you will get over this mountain as you have conquered others. Glad to hear you are getting a break from the big V, you deserve it. Now you can finish up your changing, rearranging buying and selling!! Let’s take it one step at a time, I know you can, I know you can! Good luck on the marrow draw. I will be rooting for you in our little corner of the world!July 26, 2017 at 6:39 am #95366spokanemomSpectator
Yea for the CC news!!! I am so sorry for the uncertainty around the MDS news. You have been though so much and I know what a fighter you are. It is tough to wait to figure out what is going on. Hang in there.
VictoriaJuly 26, 2017 at 5:40 am #13552
I am currently at Mayo Rochester, having gotten scans yesterday and today along with blood work.
Today, I got results of the scans:
Liver: No sign of any recurrence. The concerning area along the cut line of the original resection and the first recurrence resection has continued to shrink and is no longer “concerning” for recurrence. It has been determined that it was an inflammatory process of healing. The surgeon never felt it was a recurrence and two other radiologists both said it absolutely was not recurrence, but the oncologist at the time a year ago when it was seen and noted in a report, decided it HAD to be a recurrence and that I needed chemo. (I did not do chemo). If the original radiologist who had read the scans a year ago had bothered to compare it to the previous 3 month scans, he would have noticed that it had actually gotten smaller at that time too. Sigh.
Lungs: Nodules that were noted in my lungs (new back in January have not grown and are no longer concerning for mets. They are apparently the same as other nodules I had in my lungs previous to my original diagnosis
NEW SPOT: However a new spot of concern was noticed in my L-1 vertebra. It is very, very small at 6-7 mm and looks very much like other spots in my spine that are arthritis. I have severe lower spine arthritis. I am to go back to Mayo to have another MRI of just the lower lumbar area to get a better look at it and to see if it has grown. I asked if the arthritic spots also grow…and the answer was yes, so I further asked then how they’d tell the difference in growth because of a met or becaause it was more arthritic changes. The Dr said that when they are of sufficient size the radiologist has ways of telling the difference. If it does turn out to be a met….it can be zapped by radiation , so I frankly am not too concerned about it at the moment. And…further more, my gut says it is more likely the arthritic problem continuing to expand.
Blood Results: This is a problem, not so much for the CC, but for the MDS (Myelodysplastic Syndrome) I acquired from doing Gem/Cis. When I had labs drawn at the beginning of July, they indicated that the hemoglobin and platelets had falled. Five days later, they fell again a little more. Yesterday (Monday) here at Mayo, my hemoglobin was 9.0 and platelets were 64K after being in the normal range at the beginning of June. This is concerning enough…..that after we called my hematologist handling my MDS here at Mayo, he said he wanted me to do a bone marow biopsy again to see what was going on in the marrow….if anything bad was happening in there again. If it is….things are going to get very, very difficult, because I am currently on the only drug known that can affect MDS…and I was “lucky” to get a full remission after a few months on the drug. But, as we know, remission is not a cure…..and I was told that this drug will eventually quit working….as soon as 3 months…or maybe several years. Right now, I’m pretty anxious ….scared…..and there are a lot of tears. So, the Bone Marrow biopsy will be tomorrow (Wednesday) and results probably won’t be until next Monday or Tuesday. The hematologist said he will call us with the results and recommentations, but meanwhile, he does not want me to start the next cycle of the drug infusions for August.
The good news is that I will not be fighting on the two fronts of CC and MDS at the same time the next three months. NED as far as the CC goes. The MDS…..well….there’s a chance that there’s another reason other than drug failure…..but ……
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