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

  • StrongwomanStrongwoman Peer Support Vol
    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. 
  • StrongwomanStrongwoman Peer Support Vol
    @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.
  • StrongwomanStrongwoman Peer Support Vol
    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. :)
  • StrongwomanStrongwoman Peer Support Vol
    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. 
  • StrongwomanStrongwoman Peer Support Vol
    I was hospitalized last week due to acute abdominal pain that kept getting progressively worse. My CT scan then showed nodularity that was causing partial bowel obstruction. This was not noted on the CT scan 2 wks prior. Thankfully I got through it and was able to come home. I had fantastic doctors and nurses throughout my stay. I had some frank conversations with the weekend MD who is also a palliative care doctor. She was wonderful and took the time to explain by drawing what was occurring and what the concerns were currently.
    The urologist was consulted and it is my understanding that when necessary I will have a right sided nephrostomy.
    It is highly unlikely I will have surgery again as the risks don't outweigh the benefits.
    My Surgical Oncologist is bringing my case to the tumor review board and I meet with her next week.
    I have been referred to a doctor in London who specializes in this and will be looking into genetic mutations including the BRAF and KRAF. Not sure what this entails but was assured it would be within the month that I will hear from them.
     The doctors on the weekend re-iterated that this is palliative and suggested I start enjoying life. My Oncologist I spoke to today also concurred that I have less than 2 years and that "this is serious."  She was happy to hear that I made the decision to end work at the end of the month.  This was not an easy decision. I have been within the same field for almost 30 years and love what I do. I know it was the right decision to make.
    My clients have been "rocked" by the news.
    I made calls today for my kids life insurance and take some changes there, my own life insurance and to my lawyer to set up an appt to go over my will.
    My thoughts are all over and I think about one comment one of our fellow Teal Sisters made about "Memory Boxes". I like the thought of it.  I have been thinking of doing my own eulogy to be read at the end of everyone else full of humour and fun memories to lighten them all up again.
    I will be downsizing once I finish work to make less work for everyone. I plan on making fun memories with my loved ones and there may be tears too but that's okay. I am beginning to understand why older people reminisce about the past and why they do it. I am creating my own Playlist too.
    All of this does not mean I am giving up by any means. As the weekend doc said "to look at you, you would never know you had cancer."  She isn't wrong about that and I am going to continue down that road the best I can.
    Will update as anything comes up in case it will help someone else out there. Stay strong ladies.....life is full if you let it!💕🤗
  • Hello @Strongwoman - once again, your attitude is so inspiring and admirable! When we face, as my doctor once said “maybe months or years to live” where do we find strength and courage? I always look back at my life being full of many good things: job, family, friends, travel.. no regrets!!! Once I joined this forum, I draw my strength from stories women like yourself share - thank you. I am somewhat content to hear that I am not the only one contemplating the idea of creating a Playlist (my favourite music is Bossa Nova😀). 
    I wanted to ask you if you’ve considered clinical trials? I’ve had 3 recurrences but am stable now after the last treatment. I have an appointment at PMH with a doc regarding clinical trials next Monday. 
    Take a good care of yourself!!! 
  • StrongwomanStrongwoman Peer Support Vol
    @Keepcalmandbreath
      Thank you. My team is considering all options available to me including any clinical trials that I would qualify for. Right now it is being patient, waiting the processes out and meeting with whomever they throw my way.
    Only then can things be ruled in or out to determine the best plan. Not sure what that will look like but am taking one day at a time.
  • Rooting for you @strongwoman and best of luck! 
  • StrongwomanStrongwoman Peer Support Vol
    Good Evening Ladies
     I waited to post until I finished my appts to update you all.
     Surgery is off the table for me definitely.
    I have also recently found out I have a ventral hernia that is most uncomfortable/painful at times. This will probably not be operated on either due to risks involved with opening me up again.
      Too early to tell if Letrozole is working or not but it does make me quite nauseous after taking it for several hours. I am also much more fatigued than normal.
      I saw a new Med Onc today and I have signed papers for them to get a piece of my tumor so they can do genetic marking testing on it.  This may show nothing or identify a specific marker that may have a targeted drug available for it.
    We discussed Trametinib and the recent article of it being paired with Letrozole. They had not read it but is going to and I believe I will be starting it as soon as we figure out some geographical logistics in getting it to me. Side effects seem to be similar to Letrozole and I feel may only intensify what I currently feel.  As time is not on my side, it is worth exploring now.
    They discussed how usually LGSC I slow progressing but that mine is not behaving as such. Just happen to be that even rarer case. 
    They are going to work with my current team and perhaps we may find something to prolong things for me.
    I have been finished work for a week now but don't really feel like I have been done yet. Had a really bad spell of not feeling well from Mon night until late this morning. And doctors appts as well keeps one busy.
    I have requested to see a palliative doctor ( hopefully the one I saw in hospital) and they will either consult, consult and monitor or take over as primary. I am going with one of the first two for now.
    I have a telephone consult for medical Marijuana to help mainly with the nausea I have and some of the pain.  Will see what that looks like. Felt it was a better option than oral meds for the same symptoms given what they do to the organs (which already have their own issues).
    I feel my biggest issue currently is looking healthy and normal but family not recognizing I am not well.  Unless I am in bed or tell them I don't feel well, it is almost like they don't have to believe I am sick. Not sure if anyone else experiences that or not.
    So...that's where I am at currently.
  •  @Strongwoman
    You certainly picked a very apt pseudonym for this site.  Strongwoman you are.  Hopefully the new drug regimen will have a positive effect.  Dang those side effects though. Sometimes they're more trouble than the disease.  

    As for your family, it's very common for those close to you to be unconsciously in denial so as long as you look good and are not complaining it enables them to believe all is fine.  Certainly not that they don't care or love you. It's really that they care too much and fear the possible consequences of the disease.  Just be true to yourself and speak openly and honestly about how you're feeling and what you're going through when asked or the opportunity presents itself. 

    Keep us posted but know you're in our thoughts.  
     <3 
  • StrongwomanStrongwoman Peer Support Vol
    Hello.  Thought I would update again.  I have begun working with a Palliative team which I am liking.  The aim is to keep me out of hospital as much as possible.  
     I had another incident of not feeling well (pain and then nausea/vomiting) last week and my family had to call the nurse to help me through this.  It was not pleasant but since then, my Palliative team moved quickly and we have me set up for a "next time".  The Palliative MD and I feel it and the time before were probably both partial bowel obstructions.  So now I have a SRK (Special Response Kit) at home in case I run into the same symptoms. That way a nurse can come out to administer the drugs via injection should I not be able to take things orally like this last time.  We also came up with some oral meds to have on hand for a "next time" so that I can be guided through that way first.  The Palliative MD called me on Thursday to see how I was doing and then followed up on Sunday night as well.  That is the bonus of having this team and not having to explain myself to new doctors all the time.  We also switched me from a short acting pain med to a longer lasting, slow release one which I am finding much better and keeps the pain well below a 5.  I was functioning at a 6 or 7 daily and limiting taking the short acting ones to make them last. 
      As for my monthly follow up, my CA 125 level was taken and it is now at 143 from 120 in June.  Perhaps the Letrozole is working but not sure yet.  I have a CT scan set up for Sept 8th and will wait to see what it says as well.
      Waiting for the new Med Onc to touch base with me this Thurs evening to discuss where things are at with getting the Trametinib up here to be able to start taking it in combination with the Letrozole.
      I am feeling like all the things I am supposed to do is like a "job".  Get up, take this by this time, take that, do this, eat.
    Do some things around the house. Oh it is lunch time now, then nap time, then make dinner and start with meds again. Then rinse and repeat the following day.  I try my best to be "sunny" about it but it is a bit wearing to be truthful.
      So that is my update so far.  Looking forward to joining the next chat time.
  • Hi @Strongwoman - so glad to hear that you now have a support in place and will likely feel more 'prepared' by working with the palliative team, should your discomfort like the last time come back again.  

    I can also relate to how difficult creating a new schedule for oneself becomes.  Like you, I too did not have any plans to retire / quit my job when I did.  In my professional life - which was really, 1/2 of my day, I was basically looking after other people in some capacity or another.  Through my illness, I have found making the switch to mostly looking after myself, quite 'wearing' as you put it.  I am grateful though, that I was able to give up the external work - as not everyone can - and grateful for the support of my retired hubby, who now has to put up with me 24/7!   :)

    Thanks for sharing your update.  Your advice and support to all of us is much appreciated!! 
  • StrongwomanStrongwoman Peer Support Vol
    @Tinazzie
      Glad to hear our journeys are similiar in a way. 
     I would suggest to anyone out there to check with their life insurance policies to see if there is an early pay out due to illness and what they call "Advance Payment of Death Benefit".  Every policy would be different but if death is imminent, there is certain criteria to meet and submit should you be eligible. I had no idea about it until I was double checking my policy and asking about MAID and whether I would still be covered should I choose that route.  My adjustor didn't know either until he started looking into it and then told me that I may be eligible.  Some do it so that people can "enjoy" life and not have to worry about the financial impact it may have on families.  If this helps anyone else out there, great I am glad I have shared the information. :)
  • StrongwomanStrongwoman Peer Support Vol
    So, an update on my recurrence.  After speaking with my new Med Onc today.....since I have severe hydroureternephrosis in my right kidney and mild in my left.  They feel that my left one is doing all the work as my blood work for kidney function is good.  If at such time, my blood work starts to change then we will discuss what to do with the left kidney.  They feel the right one is gone past the stage of doing anything and no sense in having a nephrostomy tube put in that side if the left one is picking up the slack.  As it is known that people can live with one kidney.  Options are should the left one start to fail, a nephrostomy or we go to medication of some sort.
    For my partial bowel obstructions that have been recurrent every 3-4 weeks so far...if that continues then there is possibly a medication I can try that is injected twice a day (I am assuming similar to blood clotting needles) to see if I have any reactions or not.  If all goes well over a course of weeks then there is one that they can inbed that lasts long and is slow release. (I would say it would have to similar to Deprovera that they give for birth control).
    Other than that, we wait to see what happens with both drugs and what to do if my genetic testing comes back with information we can use.  
    I should be approved for Trametinib by next week and may be starting it by the end of the week should it all go through (meaning cost of it being covered).  This would be in conjunction with taking the Letrozole.
    So that is my update other than they (new Med Onc) that my CA 125 was not 143 like I was told but 153. So up 33 since end of June and the CT scan pretty much matches the rise.
    Not sure if this will help anyone else with LGSC but hopefully it will either now or in the future,
  • Hello @Strongwoman!  Hoping for the best outcome for you re the med for the partial bowel obstruction. It sounds promising and I’ve got my fingers crossed that you’ll be able to tolerate it and it’ll be effective.  Keep us up to date 
  • @Strongwoman
    Thank you for continuing your updates on your status.  Low grade serous is much rarer than high grade so we've gathered much less information on survivor experience on the topic than we have with those that have HGSC. Your updates I"m sure are enormously helpful to those diagnosed with LGSC now and in the future.  
  • StrongwomanStrongwoman Peer Support Vol
    Good Morning Ladies.
      I had my appt yesterday with a urologist and had prepared with my folder of scans/surgeries etc as well as my journal of my daily well being.  I also equipped myself with a book to read and some water as I was informed that appts may be 1 hour wait or longer. Well, needless to say, I required none of it.  I checked in, was brought into a room, the doctor came in maybe 5 mins later and I was out the door in less than half an hour.
      I had all my questions answered and now have more for other parts of my team.  LOL
    So based on what is occuring inside, the urologist is recommending that I have a double nephrostomy.  It is of their opinion to do both so as to make sure both kidneys are functioning to their optimum to qualify for trials etc.  I asked how quickly things could deteriorate and what that would look like.  They were of the opinion that in my case it won't happen overnight but worse, worse case scenario is that both kidneys eventually shut down, there is no urine output and should that occur only options are dialysis or ultimately passing if nothing is done.  So, not that I am there but for my own head I need to know these things.  I was concerned about when to intervene and when would be considered "too late" to preserve the kidneys from damage.  It was indicated that mine has been occuring for awhile and that currently there is no significant damage but if I let it go, I could face that.  So now I am in the process of processing the information to determine what I want to do.  I am fairly confident that should I go through with it, I will only do the right side (as it is severe) and see what that looks like as far as now living with a nephrostomy and if it eases any symptoms.  I have had it for so long that it is chronic and am fairly confident that I don't know what it feels like to feel well.  I am not prepared mentally to have them both done yet and live with it.  I may come around to that but just not yet.  I am also holding off until I speak with my oncologist.  I have questions like, are we doing another CT scan (3 months is early next month) to determine if the Letrozole is working?  If Letrozole is not working and things are progressing what does that look like?  Also, I have metastases on the descending colon by the bowel anastamose that they did so am curious to see if having the nephrostomy on the right side will alleviate any of that pain I am experiencing.  So many questions and no answers just yet.  I meet with my oncologist early next week and plan on speaking with my palliative doctor as well about quality of life with what has been recommended and do we wait until another CT scan to determine any of it?  See, I am coming around to the idea of a nephrostomy but in my head I need these questions answered before I can make a decision.  There is also the possibility of doing nothing until my creatinine levels start dropping and then we would need to intervene.  So, some answers but not a complete picture as of yet I will add. :)
  • StrongwomanStrongwoman Peer Support Vol
    Good Morning Ladies,
      I met with my new Med Onc yesterday and found out more and have an action plan now!
    First, my genetic testing did not show any markers of note that they can target.  I thought as much and was expecting this outcome so glad to know and move on.
    Second, I was approved through the Compassionate Care Program for the trial drug, Trametinib.  I will be using it in conjunction with Letrozole. 
    We discussed at length when I would start it.  There is no reason why I can't start it immediately but from a scientific/research point of view, it makes more sense to start it after I have my CT scan in 2 weeks. That way it will be clear cut, this is what you looked like before you started it and this is what it looks like after taking it.  Especially since this is a new way of treatment, it will help to contribute to future research (hopefully).
    We also discussed my kidneys and whether or not a nephrostomy should be done.  Together we decided that it is not time to do one yet. My kidney function bloodwork is still good which means the left one is still doing the work for the right. As is known, we can function with only one kidney.  Med Onc is also confident that it may not necessarily change anything (pain, urination etc) as they feel it is the tumour growth that is causing this and it may not rectify the problem by having a nephrostomy (referred to another case and explained to support it).  
    So, that is where I am at and will start Trametinib in 2 wks time and go from there.  
    Looking forward to the Symposium as well to see if there is any new research/trials for LGSC coming up which may open doors going forward.

  • @Strongwoman, awesome update.  You sound very comfortable with your new Medical Oncologist and she's helped you put to bed a number of issues and concerns you had but were unresolved.  I agree that  it's better to know something is not available to you and move on than holding our questions and false hope and perhaps missing out on alternatives and other options.  
    Great news on the Trametnib.  Let's hope it in combination with the Letrozole produces the response you're hoping for.  Shrinkage is always the goal but when you're recurrent "stable" is always great to hear. And I know the thought of having to have a nephrostomy was weighing on you.  That must be a relief to hear her recommendations.  
    Have a good week ahead.  Hope to have you back into our Teal Thursday group this week.
  • StrongwomanStrongwoman Peer Support Vol
    Back to update ladies.....
      As a refresher, I have LGSC that is acting more aggressively than it should.
    Saw the Oncologist yesterday in London and we discussed many things based on my new CT scan.  You can find part of what I will say in a couple of my other posts but here goes...
    Latest CT scan shows that my hydroureteronephrosis is now 'mild to moderate' on the left and still severe on the right. The left, if correct info, means that it has changed slightly as it has been 'mild' up to now.  So the concern is my high blood pressure that I am experiencing. My question was, is the high blood pressure coming from the renal (kidney) hypertension?  I was told 'good question'. Now I will go on a calcium channel blocker medication for my high blood pressure and the Oncologist will confer with the Urologist about this as well as set up to have a radiographic view of the kidneys, ureters and bladder.  This will show us what both sides are doing and also help guide as to whether I have the need to do both sides for a nephrostomy or only one side as we are at this point assuming the right kidney isn't functioning but we really have no idea.  The reasoning behind any of this is my question of: when do we reach a point of no return of doing a nephrostomy as I approach renal failure?  So, that is where that is at.
    Trametinib is not the drug for me, sadly but hope it works for others out there.  Based on the pictures I showed him of my rash, he admitted it is the worst case he has seen yet (bad reaction) and that he can't guarantee going on a low dose will not include having a rash that may or may not go away.  To pre-emptively go on an antibiotic is out of the question as I am allergic to most and want to save my options for when or if I have an infection that they have options to choose from.  
    As to next measures, I am to stay on Letrozole (which I haven't stopped taking) and we could look at other options should it stop working.  Problem or I will rephrase that and say choice is.....clinical trials for LGSC are in Stage I phase for anything new and that it is like being a guinea pig to what side effects may or may not be.  Chemotherapy was approached and due to the ineffectiveness of it with this type of cancer, it would have minimal to no effect.  I did ask about medicinal turkey tail mushrooms that was brought to my attention by a friend in which they have seen positive effects with as an adjuvant treatment in treatment of cancer.  They suggested that this would be a Stage I phase as well so side effects etc would be same as immunotherapy treatments.
    So, my options are limited as I know what I want and don't want to put my body through.  All I do know is that if this cancer progresses and the Letrozole stops working, it will result in some sort of organ failure. Not good news but they did say that they will continue to be in touch with me and monitor things and if anything new does come up in research, that I will be informed so that we can discuss and try it.  Sadly, there is not much out there for LGSC research but from what I saw of the forum, they are some who are working on finding some solutions.  I can only hope that it will be sooner rather than later.
  • Hi @Strongwoman
    I also have LGSC and although I tried Trametinib, it didn't help so ya, not much else they can offer me. I did ask if I can have another HIPEC surgery (heated intraperineal chemo) , they said probably not. I asked if I can have another debriding surgery, they said only if they are confident they can get all of the cancer out. The problem is with LGSC, there is not only one tumor, but many lesions and cells throughout the abdomen, a bit like a "gun shot wound pattern" I was told. I have lesions on my liver, which makes me nervous. I asked about the probability of the Ca cells to invade the liver, they said only time will tell. I too have pains in the abdomen, starting to affect my digestion  too. 
    I do hope some clinical trials for LGSC will happen before too long. 

    And to answer your question about how family do not realize how we feel: a family member went as far as to ask me if I "really had cancer"!!!! That did not sit well with me! 

    Stay strong and sending you all love 💕


  • StrongwomanStrongwoman Peer Support Vol
    @Sylviequebecbc
      A family member actually asked that?  On one hand I am gobsmacked and on the other hand....it would be something my mother-in-law would ask. They still have no idea I have recurred. 
      It is sad that for us the options are limited and the research isn't there. Sounds like it's coming but it takes time which is our most valued thing right now. I have ears out at OCC and my Oncologist in London should anything new come up.  I will definitely post it if I do hear of anything.
      Yes the gunshot pattern or they call it seeding can occur throughout the abdominal cavity. I have several sites as well which makes it difficult for anything targeted like radiation. I, too, have been informed that they won't open me up again unless it's an emergency and the benefits outweigh the risks. Tough place to be and to know.
      You have a lot to process with the information you have received. We are all here with you throughout your journey.

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