Recurrence and possible signs

I am inquiring to all my fellow Teal Sisters out there regarding recurrence symptoms or testing.  I am inquiring if anyone knows any information on or where I can find information regarding low MCH, low 25-hydroxyvitamin D and high Vitamin B12 in blood work accompanied with low albumin (too low to even document) and creatinine levels in urine. Has anyone else had this occur and did it lead to anything?  Currently awaiting my recent bloodwork regarding my CA 125 levels as well. The bloodwork and urine analysis that I stated came from Family Doctor (who suggested I was low in Vit D only and did not comment on the rest even though it was flagged) and I printed off the results and gave them to my Med Oncologist yesterday prior to my other bloodwork I am awaiting. I have a follow up with my Med Oncologist in 2 wks and would appreciate any information or similarities from anyone.  I would like to remain optimistic but we all know how scary it is to possibly face a recurrence and would like it to not be a possibility.  Doing my best to be informed with correct information so I can ask any questions that are relevant in my follow up. If anyone has any guidance on this, I would appreciate it. 

Comments

  • I am adding to this post and will keep everyone updated.  My CA 125 level has come back elevated from previous testing this year on top of the other blood work.  I will post anything relevant to these findings in case it will assist anyone else in the process.
  • Hello @Strongwoman, I cannot comment on the specifics of blood work (apart from CA 125) and whether there is a connection to a possible recurrence. But when it comes to elevated CA 125, and if there is a reason for concern (depends on where it was before and by how much it has grown..), my understanding is the normal procedure is to have CT scan and repeat CA 125 in 6 weeks. 
  • @Keepcalmandbreath
    Thank you for your posting. I have a CT scan scheduled for Tuesday coming.  I meet with my Oncologist on Friday and we will be discussing results/next steps at that point.  I will post any findings/connections that are relevant that may assist another Teal Sister.  We all go through things individually but sometimes there are commonalities amongst us.
  • Hello Ladies. I am posting to update you on my progress made thus far from bloodwork and recent CT scan. 
    I would like to share that I have not been off the mark with both my symptoms and research. I am able to weed through most of the information out there and determine what has validity and what does not as well as respecting my team and their knowledge base.
    I, personally do much better with my team when I am aware of what I am dealing with ahead of time so I can ask the questions I need to and not have to process new information and then attempt to ask questions.  That is me though and this may not be the same for you.
    As I posted, my 2 bloodworks that I had done raised some questions for me to start researching along with my symptoms.
    My recent CT scan (that I was able to see prior to my Med Onc appt)  confirmed my research and symptoms.
    I have 2 things going on currently and am still waiting medical advice from another Oncologist as well as my surgical gyno oncologist as to where this is headed and what I will decide to do. I am definitely experiencing a recurrence for one. Second, one of sites of recurrence is on my previous surgical site and is restricting my kidney function (hence my first bloodwork results). So it is to be determined whether a debulking surgery is to be performed, chemotherapy will definitely occur and/or I will require a double nephrostomy. 
    In the meantime, I am aware of best and worst case scenarios and what that looks like. I am steering the ship as to who I tell, what information I share with them and any future decisions. It is all difficult to deal with as I understand many have "walked this walk" before and have had various outcomes. I believe everyone must come to terms with what they want for both themselves and their family/support team.  I will not say more than that currently as I still have 2 Oncologists to speak to and will have a better picture after that. That will determine whether I cease working and what that looks like or take a pause and for how long. Remaining both hopeful and realistic at the same time. :)
  • Good Morning....I have more updates since my last post.
    I forgot to mention I was diagnosed with Stage 3C low grade serous last year.
    I spoke with a member of my team yesterday and received more information.  Despite this supposing to be a slower in recurring, I am experiencing a recurrence more rapid than the norm (I clarified this with my team member and feel confident in stating this).  The plan thus far is this......I will be starting Letrozole in the hopes it will starve the tissues and either reduce the size or stabilize them....the alternative is it doesn't.  I will be monitored with monthly blood tests and CT scans every 2 months.  My team is working cohesively and are putting out to any and all colleagues as to what may or may not be available to me to help combat this.  That includes any clinical trials that may be relevant and getting another opinion on my genetic testing as well.  My Gynocological Oncologist is discussing my case at a round table meeting to determine if surgery can be performed both safely and effectively.  It is currently off the table from my understanding,  I am being referred to a Urologist who will monitor my kidney function and determine whether I will require stents or nephrostomy at any point in time,  I realize and have acknowledged with my team that this recurrence is aggressive for this specific type and that I am deemed incurable and we will work through how to manage it the best we can.  I am accepting of the information I have received and am happy my team is working together on this.  I am still trying to work through as to how I will proceed with working as my work is very physical and if this is what I want anymore or not, I also am planning for an eventual end and making sure that all of my affairs are in order in case treatment does not work.  Not that any one person wants to think about this but it is a possibility and do not want to be doing this when I may be even more unwell. The fact that Letrozole does and can diminish bone density is pretty much nil and void compared to dealing with the sites of recurrence, possible outcome of them growing in comparison to the possibility of osteopenia or osteoporosis.  So that is where I am at and will see how the body responds to the drug and what my team comes up with when the information becomes available to them.  
  • Hello @Strongwoman - thank you for sharing your update. I was impressed by the efforts your team is doing to work this through and your attitude towards the whole situation is just so admirable. I cannot add anything in regards to your proposed treatment as I am high grade and my treatment/drugs are somewhat conventional. But I am 100% with you on “making sure that all of my affairs are in order…” Also, like you said in your earlier post, trying to stay hopeful and be realistic at the same time. I find it is a fine balance… I do hope that Letrozole will work for you and there maybe something else out there for your specific case. I’ve recently spent a good amount of time doing research on the topic of OVC treatment and found that there are novel treatments in the works… Hopefully, there will be something new here in not too distant future and it will become a curable disease. 
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