October 31, 2016 at 9:55 am #62418middlesister1Moderator
Many good wishes coming your way; hope tomorrow goes well.
love and hugs,
CatherineOctober 31, 2016 at 1:20 am #62415iowagirlMember
Lainy, I am still planning on visiting you in the here and now…on this Earth…..you never know what winter might bring. Meanwhile, I am going to try to create a mental picture of you in your cheerleading outfit next Tuesday . It’s going to be a hard day.. As for the other…..the same could be said forany relationship…..knowing that at any time, something could happen which is difficult to live through. We cheer each other on through a lot of crappy stuff that has happeneded and I hope and pray that for both of us…..we’ll continue to do that for each other as well as celebrate all the good stuff for many years more.
Marion, Yes, it is not lost on me that the CC was zapped and is gone again….NED. I had a hard time last night and off and on today dealing with this new info about the blood problem …lots of tears. I read last night that even the Meyleodysplastic Syndrom turns into leukemia over time in 30% of the cases……and we’re talking more chemo……and if it gets bad enough….the potential for a stem cell transplant. Good grief!!! Seriously, ….what next? Okay …70% don’t turn into leukemia….but apparently they treat MEDS the same as leukemia. I soooo do not want to do another chemo. Sigh.
If fingers and everything else crossed will have some bearing on it….please….turn yourself into a pretzel on my behalf. I know you always have my back….and yes, I can feel it.
The kids brought over the two little grandboys this afteroon….which was a wonderful distraction for a number of hours. Now that they’re all gone…..the walls are closing in again……and the tears are flowing again. But, I’ll find something to occupy myself in a bit and it will be okay again. At least we won’t have to wait too long before going back to Mayo to find out what next.October 30, 2016 at 4:05 am #62416marionsModerator
Julie…….wow, I am thrilled to hear that cholangiocarcinoma is zapped and gone and really can’t quite believe something else has crept up in exchange. Seems that the chances are low of you having developed a blood cancer, hence I am quite optimistic outcome. That’s my stance until I hear otherwise.
In the meantime know that you have a tidal wave of support heading your way. Can you feel it?
Fingers and everything crossed for next week’s Mayo visit.
Hugs and more hugs,
MarionOctober 29, 2016 at 9:35 pm #62417lainyParticipant
Julie, As you know I already “spoke” to you and I am still banking on this situation to be just an idiosyncrasy. It was also odd that Mel’s wife went through this same thing and nothing further developed. Mel asked me how am I able to get so close to someone on this Board to the point we feel we are Sisters and take this roller coaster ride over and over and I answered, “How can I not?”. I am glad you will not be able to see my cheerleading outfit that I will be wearing on Tuesday. Please know that I am with you all the way and one day we WILL meet here on Earth!October 29, 2016 at 9:02 pm #7022iowagirlMember
Jan 2014 5cm Intrahepatic tumor found in left lobe perifery
Feb 2014 surgery at Mayo Rochester followed by 6 rounds of Gem/Cis
Nov 2015 1.5 cm recurrence along surgical resection line
Dec 2015 surgical resection of recurrence
July 2016 1.1 cm recurrence in right lobe
Aug 2016 Microwave ablation of 1.1 cm tumor
Oct 27….New scans of lung, pelvis and abdomen. NO NEW TUMORS. Liver has pretty much healed..only slight scar tissue remains. AMAZING. I am now at 33 months post finding the tumor.
I was advised at the time of the last recurrence in July to go on chemo (FOLFOX), but due to the damage to my body from the Gem/Cis and the fact that I was actually operable, I pushed hard to get a surgical consult that led to the ablation at the end of August. The oncologists believe that I will eventually see clusters of tumors appear and as such, I should do chemo to keep them microscopic (if the chemo would work to do that). I had other doctors believe otherwise….that IF that was going to happen, it would have happened by this time…..and in reality, we have seen one tumor at a time…a significant length of time from the first resection. It’s a crapshoot no matter which way you go…..and this is the direction I want to do if at all possible to have as much “healthy” time between recurrences.
****However, my blood tests were troubling in that the platelets were at 48K…..similar to what they were back in 2014 during chemo. That led to having me stay an extra day at Mayo to do blood smears and a brain scan.
The brain scan was to check for a brain bleed due to the very low platelets and some vertigo that I’ve been experiencing. The BRAIN SCAN WAS CLEAR….no sign of a bleed or any tumors.
The blood smear is another story. It showed ABNORMALITIES with the white blood cells which led to another test that showed a small population of blasts. As little as I know about this right now…blasts are formed in the bone marrow , stay there until matured and should not be in the blood sample , even in small amounts.
Thus we are looking at two possible things as the cause of the blood problem. 1. Meyleodysplastic Syndrome (forgive my spelling if not accurate)…otherwise known as MDS or 2. a very small possibility of a form of leukemia.
I am to go back to Mayo next Tuesday to discuss this with a Hematologist who will decide whether to order a bone marrow biopsy. I suspect highly that will be the case. I don’t think that they can figure this out without the biopsy. ]
This isn’t what I wanted to hear……nor share with family and friends. On the positive side…the CC is behaving itself again and I’m celebrating that. Whatever else is coming…..who knows….but we’ll deal with it.
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