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Rise in CA125; recurrence

Hi everyone. Looking for your personal experience of CA125 monitoring. How did you deal with it, personally? What did your doctors (oncologists, family physician, etc.) say to you about the subject?

A month from now I have a regularly scheduled meeting in person with my oncologist. But after my blood test this week I placed a call with their office to see what they thought about the latest CA125 count. (I will share here below a few details about my treatments, knowing that there might be a few keyword searches that will lead here, to this discussion, and thus that my own personal experience might help others going through something similar - or be of benefit to others by demonstrating the variety of directions that treatment can take).

In July 2021 I was diagnosed with high grade serous carcinoma and treated immediately for a pleural effusion. I know that statistically a pleural effusion is about as bad as it can get when it comes to outcomes (of course: "I am not a statistic", and I am an athlete who is very fit, eat well, meditate, etc. etc.). Last December I finished first line treatment (carboplatin/paclitaxel and total hysterectomy); and I started on a maintenance treatment/targeted therapy of niraparib in late February. In January my CA125 was 7.5, and since then the number has been increasing gradually into the teens and twenties, a couple of points every month. However, this week the blood test result showed that the number rose from 23 to 34. I know that this is still too low a number for my oncologist to initiate a change in treatment, as the rise in number could be due to any number of factors unrelated to ovarian cancer; and anyway, if the CA125 is an indication of cancer growth, the amount of tumor present right now is not likely to show up on a CT scan.

Furthermore, there is not much benefit from rushing into taking more chemotherapy since it is an ineffective form of treatment ultimately because of a cancer cell's ability to mutate. The oncologist told me that they would consider making changes when the number shoots above 50 (which is a standard approach). My understanding is that given the paucity of treatment options for this cancer, holding off as long as possible on another few rounds of chemotherapy is better. Furthermore, my oncologist told me that there was not necessarily any point in increasing the dose of niraparib since there is not much difference in outcome between people taking 100mg niraparib daily, like myself, and those on the higher daily dose of 200mg (I started on 200mg, but after seeing problems with my chemistry the oncologist reduced the dose).

So, I am curious to know at what point people made changes to their treatment: were changes made because of the CA125? Or did you wait until you developed a tumor that could be seen in a CT scan; or until you had symptoms such as pain, or bloating, or a pleural effusion? How did the conversation about treatment go with your oncologist?



  • Strongwoman
      Welcome and I am saddened to hear you have to go through this.  I will let the other HGSC ladies weigh in on what you posted.
      For myself (LGSC), I was deemed NED in Sept 2021 after debulking and chemo last year. In March 2022 my CA125 level was 40 which is only 4 points above the level they want to see it at but was having symptoms.  I had a CT scan which was very vague in comparison to all my other ones and I questioned it.  But....I had to go through the process regardless.  I kept documenting my symptoms and waited until my June testing and appt.  It showed then that my CA 125 level was at 120 and my corresponding CT scan indicated recurrence and hydronephrosis/hydroureter as well.  Since then, my last CA 125 level (just last week) is at 143.  I just had a CT scan today.  
     My LGSC is not acting "normal" and is being aggressive in nature as to why, they are all unsure.  I have been on Letrozole for just over 60 days now and am to be going on Trametinib but have no idea when or even if it will happen.  I have been deemed palliative and am enjoying life.  I have a Palliative care team that come to check on me once a month who are great.  
      As for my conversations with my oncologists, I was aware of everything prior to the appts so was ready and had processed the news already.  I quite bluntly asked "what's next and where do we go from here."  I had already done my research as well so that I could make my appt as effective as possible.  So that led the Letrozole.  It took the 5th doctor (who was a palliative doctor) telling me I should end work and live before I actually listened and followed through on that.  For me, I think it was a well.....she is a palliative doctor who doesn't normally see me but sees very ill people....if she is telling me this, I better listen.  But that is me and I have a different type than yours.  
      So, I am positive the other ladies can assist you along with yours that have the same type of diagnosis.
    Keep us posted.
  • @Strongwoman Thank-you for your input. It helps to hear about others having the same emotional roller coaster ride with the CA125 numbers. 

    I remember being shocked when a physician at a supportive cancer care organization mentioned that I was palliative. Other than the pleural effusion and feeling tired (which I attributed to working 6 days a week, commuting for work and still training hard in the pool), I had no other symptoms. Since then I have reduced work to part time, and eliminated the commute by finding a job locally. 

    Spoke to the oncological team later today and they need another CA125 reading a month from now before they can make a decision. I had COVID during the last month when the CA125 rose 11 points, so they need to rule that infection out. It is sobering to read about your numbers. Life sure has its challenges, doesn’t it?!
  • hope2022

    I'm sorry to hear about your distressing situation. It's so hard waiting each month to see what's going on. 
    Up until last week I too was on Niraparib. My ca125 rose in August and again last week. Between some stomach discomfort and a rising ca125 my doctor felt it best to stop the parp and get a ct scan. I understand that everyone's situation is unique. Just a little history: diagnosed in May of 2018 with HGSC followed by surgery and chemo. A recurrence last year with 6 more rounds of chemo that finished in March of this year. I started the parp in mid May. I don't know if this is  helpful, but just thought I would share my experience. 
  • There is little doubt about what we are dealing with, and it is such a hard road to follow! Thank-you so very much for the information. It is very helpful. You are helping me while bravely fighting your own battle.

    By stomach discomfort do you mean bloating? Pain in the abdomen?
    May I ask if you know at what number your doctors said they start to worry, or what your number was when they ordered the CT scan? I realize that at 34, my CA125 number is comparatively low. However, it has been climbing gradually ever since the end of my initial chemo/surgery last fall. My oncologist told me that if the number spiked suddenly to over 50 then she would want to address the issue. But I was listening to an ovarian cancer podcast just recently and that oncologist said they start to pay attention when the number is over 35. Granted, this was in the USA, so any excuse to treat someone helps generate income (sorry if that sounds unkind).

    Best wishes!
  • Strongwoman
    @hope2022 @PaulineJ
      From my reading normal CA 125 level is 36.  So, I understand the oncologists point of view of the numbers and what they tell patients.  It is also not a number to be relied upon solely from my reading/information as well.  Continuous climbing numbers, symptoms and any other testing is what they usually go by.  As I said in mine, although my number in March was only 4 points above the norm, I was experiencing symptoms, questioned the CT scan at the time and that was all I could do.  I had to wait out "the process" to go further with it.  
    So, as frustrating as waiting is, sometimes it is all we can do.  In the meantime for anyone out there, document your symptoms as I tend to forget each and every day what happens except for the more memorable ones. Sometimes, some of the things we experience we take as our "norm" but could be indicators for the oncology team.  Like......bowel movements, urinary symptoms/flow, headaches, GI symptoms, cardiac symptoms (shortness of breath, pain), pain levels on a day to day basis.  They can all be small pieces of the puzzle for them.  Some could indicate disease progression to the oncology team. Document your sleep patterns/difficulties too as there are some medications out there that can help with that and may be of benefit to you.
     Food for thought as we all continue our journeys separately but together.
  • hope2022
    I'm happy to hear that my post was helpful. It's difficult to know sometimes when you share your story if it's a good thing or not.
    I have been feeling a little fuller than normal recently, most noticeable around dinner. It was a little too familiar from my symptoms last year. I cut out a few items from my diet this past week and my stomach has been much better. I feel it's a good sign, but not quite sure what to make of it. 

    My ca levels have always been relatively low, even at diagnosis in 2018 it was 40. My cuŕrent oncologist and the one that retired last year have both said that it's concerning when the ca goes up by 10 points from where it settled in at end of chemo treatments. My ca was 7 for about 18 months after first chemo and went up and down for about 8 months. When it got past 20 I had a pet scan that showed 3 tiny spots, too small to measure. When I completed treatment in March this year, ca was at 11 and stayed there until August. It rose by 6 and then again by 5 last week, so just over that magic number of ten. That's just me though. The doctor has always told me it's not so much the number, but the direction it's going in. I know it's not always a good marker for what's going on. 
    Sorry for this long explanation. I hope it all makes sense. The ca125 is so differnt for all of us. 
  • @hope2022 you hit the nail on the head with your last comment.  Yes, the CA125 is so different for all of us.  It can be so confusing for us, as patients, to try to not put so much importance on CA results. An your doctor is right in saying it's not the score but the trending over time they look to.  But there are so many nuances.  I believe we will be having another Symposium this fall, and OCC will continue with their Monthly Speaker series.  I've suggested in past that something be devoted to a solid explanation of the CA with lots of Q&A to address the realities and more so the myths.  There have been recent changes in OCC so I will do this again to ensure those involved in developing those programs don't lose sight of a need we have for more clarity.  

    If it gives you any solace though, when my last recurrence appeared my CA125 had gone from something in the 40's to over 7500 with the trend over the past four months all being upward in increments that were about doubling my score each time.  Yet, when the CT results came in the progression in both areas they monitor was only in the millimetre range and there was no evidence of any new disease.  I learned long ago though not to waste my energy fussing over scores and just leaving my oncologist to make her own determination about what it all means and what we need to do, which is usually one of two options:  do another in 30 days to begin to establish if there is a trend or order a CT since their is an upward trend that means something may possibly be going on and it's time to investigate.   
  • hope2022
    Thanks for sharing your experience about your last recurrence. It's good to know that a rising ca doesn't always mean significant progression. 
    My doctor told me last year that my ca doesn't seem to correlate with pet/ct scans. For myself I know it's the symptoms that guide me a little more as to what is going on. 
    It appears the Niraparib didn't work for me, so I would be platinum resistant, which of course worries me a lot. I am eligible for a clinical trial and my doctor thinks it's the best option for me right now. After the ct I will find out what that is all about when I meet with my doctor. Still waiting for a date for the ct. I hope it's soon if the cancer is growing. 
  • @hope2022 and @Fearless_Moderator You are both so brave! It sounds like you are able to accept your disease and its progression, while focusing on the details that are positive and that give hope. 

    I suspect that niraparib is not working for me either. I read somewhere that we all need to shift the language we use to describe  ourselves from labelling our disease as “resistant” to recognizing that the drug is ineffective in treating our disease  (even if it may have bought us two or three extra months). This puts the onus on the medical system to come up with effective treatments, and gives us permission to demand change.
  • Hi everyone, @Fearless_Moderator, @hope2022,

    On the subject of  CA125, and recurrence, I will let you know that I have now started chemotherapy for a relapse. In the space of a few weeks since my last posting here,  my breathing became more difficult and my CA125 shot up from 34 to 85. I had already requested an x-ray a month earlier because of my lungs. The question was whether the rise in CA125 and trouble breathing while swimming was due to a COVID infection or cancer. Well, last week’s x-ray showed that the malignant pleural effusion was back. So in my case it is the combination of a trend in the CA125 and the symptoms which tipped me off as to the recurrence. 

    This past Tuesday I stopped taking niraparib and started a 6 month chemotherapy treatment of carboplatin and doxorubicin pegylated liposomal (Caelyx). Had an allergic reaction but got through the first treatment eventually. Now that I am a few days into treatment, my main symptoms are fatigue, a little nausea and acute leg pain (which can be treated with Tylenol).

    Hopefully this will give me a few months of stability in the spring.

    All the best,

  • hope2022
    Hi there, back in chemotherapy is a tough place to be. I can certainly relate. The fatigue can be a little frustrating, not being able to do all the the things you like to do. Last year I too was on Caelyx. It caused some mouth sores and severe constipation, which were both manageable. 
    I'm not familiar with a pleural effusion, but hope it doesn't cause you too much distress. 
    I will be starting chemo this week, just carboplatin on it's own. I am just on the cusp of the 6 months, so my doctor wants to try it again, as it worked so well before. The 2 open clinical trials aren't an option right now as they both require a biopsy. The  only tumour large enough to biopsy is not in a safe spot to access. 

    I can only speak for myself, but focusing on just one day at a time has really helped me get through this journey so far. 

    Take care
  • mjmck21
    I'm just seeing this thread now but thanks all of you for this discussion. I have some commonalities and and differences that might be helpful.
    Background. In Nov 2021, I was diagnosed Stage 4 HGSC. Previously, I had abdominal bloating and bowel issues for a few weeks started the process to see my family doctor. Around Thanksgiving last year and like you Pauline,  I was swimming lengths and had to stop I was too weak and breathless. I thought I might have COVID. It took a while to see my family physician but she was fast in ordering tests, endoscopies etc but the real delay came in waiting for an x/ray, ultrasound. Anyway by the time I was diagnosed I had ascites throughout my abdomen and like you a pleural effusion. To be honest this was the worst symptom and meant it had metastasized to my lungs, liver  and a lymph node. Frightening as I was not able to breath properly and getting worse. I felt like 'Violet Beauregard' from Willy Wonka's chocolate factory after she eats the blueberry gum. Like I needed a pin to pop me and the pressure was intense in my abdomen and chest. Was diagnosed at emergency after my xrays and ultrasound showed my lung was compressed by 30% and masses in my abdomen. They drained the fluid (thoracentesis) and it offered some relief but not until I started chemo on Dec 3rd did that begin to reduce, thankfully. 

    I had a clean cyto-reduction surgery in March and responded well to 8 rounds of carbo/taxol until July of 22. The lowest they were able to bring my CA-125 was 58 and it started to slowly increase but I still had hope that it would stabilize. I felt great by end of summer and went on Zejula in October 7. There were access problems that delayed my start by 2 weeks.  However now I have another pleural effusion, some constipation, some mild abdominal pain and my CA has jumped to over 3000. Further background. When diagnosed last Nov 20th, my CA-125 was over 22,000. (yes 3 zeros).  A bit of bright news, my oncologist wanted me to stay on Zejula (started at 100 mg now 200 mg) and give it a chance to work as we just started it and although there was increase between the last two CA results the rate of increase had reduced substantially which could be a sign that is at least partially working.  I will be getting a CT scan. I have been getting regular blood work including CA-125.
    It's a bit confusing because many of the symptoms of recurrence, including dyspnea,  (not an effusion but inflammation of the pleural lining), are similar to Zejula adverse affects based on the product monograph which I have poured over multiple times. 
    In the meantime we need to treat the effusion. Along with thoracentesis,  they can put in a chest tube for longer term and there is a procedure pleurodesis, that fuses the lung to the chest wall to prevent further fluid. It's supposed to be effective with not a lot of lasting damage but I have not been able to get my head around how this would work and not have lasting negative impacts.  So I'm hopeful they can address this debilitating symptom and if Zejula is working then they could stabilize peogression. Fingers crossed. 

  • mjmck21
    oh no I typed out a long response to add to this discussion but when I made an edit did not save and post. I will try and recompose in the next while. 
  • hope2022
    I am half way through my chemotherapy and see my CA 125 has gone up by 5, so I am thinking this isn't a good sign. It was at 50 before I started the treatment and then dropped to 32 and then to 14. I was expecting it to stay about the same or go up or down by a point or two. The tumours had shrunk when I had my ct on Feb. 3. Can treatment just stop working half way through? Has anybody had a similar experience ? Feeling very worried right now and trying not to freak out. 

  • @hope2022 I'm sorry to hear you're feeling anxious.  Your questions are best addressed by your oncologist but from my own experience over the past 7 years, the CA can bounce like crazy and mean absolutely nothing; especially a single shift.  What they look at to pinpoint any possible changes in progression is the trend over time.  If it's rising consistently then that's usually a signal to investigate further but a  single shift of only 5 points and within normal range is usually of no concern.  There are other factors, other than tumors, that can impact the response to the CA.  That's why it's not considered particularly reliable.. Mine just went up close to 1000 points (yes, I'm over 3000) but it was expected.  i"ve been in hospital for a kidney reaction to strep throat around Christmas combined with getting Covid while in hospital (ya, lucky me; what a way to start off the new year) so I'm not surprised that the cancer is starting to progress in the absence of a month out of treatment and is also responding to the other health issues.

    Don't worry unnecessarily.  Reach out to your cancer care team.  Let them know you're anxious and I'm sure they'll help put your mind at ease or if there any cause for concern get it managed.  

    Thanks, by the way for the welcome back at this week's Teal Thursday.  I did miss everyone and happy to back in the saddle again.
  • hope2022
    Thanks so much for your post. I know that I need to find a better way to deal with the ca125 results. My counsellor at BCCA says I've gone a little beyond being anxious, something we will talk about next time. I feel like I am loosing a bit of hope if this regimen isn't working. I will find out more next week when I see my doctor. 
    I admire your ability to seem to stay focused and positive. Glad you are out of hospital and on the mend. Thanks again. 
  • I am very concerned right now. All my scans have been negative. My onc. Tried me on letrazole but I thought I was dying so they stopped it. My CA 125 has been up in the hundreds but my only other symptoms have been a bit of shortness of breath which comes and goes and could be anxiety related, and fatigue, which has been improving. I finished my first chemo last August 2022. Now I am scheduled to start carbo and Caelyx next week. When I asked the clinic dr ( not an oncologist) why I was getting chemo when there was no evidence except the numbers, he replied “ Insurance “ I live in Canada so there is no financial incentive for them to put me on chemo. What should I do?
  • Strongwoman
      What type of cancer do you have?
    LGSC or HGSC ?
  • Strongwoman
    @Hooodith If you know what type you have it will be easier for us to weigh in on your question.
  • Hi Serous something or other
  • It was stage 4 when I was diagnosed, Feb 2022, with pleural effusion. My first chemo worked well.
  • Strongwoman
    @Hooodith Thanks for sharing that info.
    It helps. Based on that, yes I certainly would try the chemo combo they are suggesting. HGSC does respond well to more chemo and chemo combinations. 
     Only thing to be aware of is that chemo can have a cumulative effect on the body which can mean the side effects may last longer or some may be more severe. For example the fatigue from it may be more pronounced.  It's the body's way of handling it. You can discuss that with your team/Oncologist as well. 
      From  what I read here on the forum many of the HGSC ladies have had success with  more chemo and the combo you are about to try.  You can type the names of the chemo in the search bar and read more if you would like.  There are still many chemo combos to try in the future if deemed necessary.
      So if it were me, I would definitely go ahead with their suggestions. Prepare yourself for side effects and not feeling well some days by meal prep, friends/family making meals and accepting help when you need it  I find many want to help and all one has to do is specify what that is and accept their generosity.
      The choice is yours to make and you must be at peace with it. Wishing you well and if you would like to share what you decide and how it goes along the way, it would be great. Plus you may find some helpful tips from the ladies that have had this regime of chemo and how to better cope with the side effects you may experience.
      Hope this helps and wish you the best.
    Take care
  • ellie
    A thought.  You mentioned your scans have been negative but your oncologist has scheduled more chemo.  Have your scans been CT scans? Research papers recently have suggested getting a PET scan as well as a CT scan.  Unfortunately, most provincial health authorities (if not all) will not recommend nor pay for a PET scan when CT scans have been negative.  However, my limited knowledge suggests that the PET scan which identifies areas of metabolic activity, would substantiate/negate any suspicions of cancer cells growing but yet undetectable by a CT scan.  PET scans are available for approximately $2500 Cdn.  Organizations exist in Canada which will handle PET scans.  The PET scan would probably substantiate your oncologist's decision to schedule chemo.

    Hope this helps.

  • Hi, Thanks for your comment. I have now started a second lot of chemo. I do not have the money to get a private PET scan. I now have proof of the cancer returning as I have pleural effusion again. Hoping this new cocktail will put me back in remission. At least this time I won’t lose my new and curly mop.
  • ellie
    My thoughts are with you...this journey is so difficult.  And I will be praying that your new and curly mop remains whole!
  • I have now had one infusion, and have done more research on Caelyx, also known as “Red Devil”. Or doxyrubin. Side effects, if you can call them that, are permanently damaged heart muscle causing heart attacks, secondary cancers, (blood and/or mouth cancers, ), hand and foot syndrome causing reddened, swollen palms and soles of feet requiring creams and bandages, possibly being unable to walk because of pain. My palms are already looking red and are a bit sore. After one infusion. I am thinking of not continuing. Why would an oncologist prescribe a drug that could cause such damage, not only to the body but to quality of life? Are there no other possibilities? I need help with this. I am 76 yrs old. I don’t expect to live forever, but I do want some quality of life before I die. If anyone has had experience with Caelyx I would appreciate hearing from them. Also, if I stop doing this, does it mean I am giving up on treatment?
  • Hi @Hooodith

    I went through 9 chemotherapy treatments of Carboplatin and Caelyx. I had a spike in my CA125 after the 7th. treatment (from 50+ to 110), but then it came down again once, before shooting up again after the 9th treatment. An X-ray and CT scan confirmed that I had become platinum resistant as my pleural effusions had increased again. So I am now - back - on paclitaxel, and this is paired with Avastin. The latter is working well on my pleural effusions.

    I am 64 years old, and other than the cancer am quite fit. The side effects I experienced on Carboplatin and Caelyx were these: nausea for at least 10 days after each cycle. I tried a number of expensive drugs to treat the nausea (I have a good extended health plan benefits through work ), but those left me very constipated, and/or spaced out and emotionally distraught. I chose to give up on those drugs, knowing that the nausea would lessen with time. Many times I considered quitting chemo because of the nausea, but it never lasted. Mid cycle I also experienced sore gums, and infections (my athletes foot and herpes virus would flare up). During half of the treatments I experienced acute pain in one calf at dawn on day 4 or 5. That lasted a few hours. As long as I rested and took Tylenol it went away.  I was also quite fatigued, especially during the first week after treatment. All of these side effects would lessen with each day away from the infusion, until I felt more like myself by week four. 

    While on treatment I was able to be physically active (working, skiing, hiking, and road biking included). The treatments affected my neutrophils such that I almost had to delay treatment on several occasions. But I did not have any of the more serious complications that can occur with this treatment. 

    Hope this helps,

  • Strongwoman
    @Hooodith I can hear the frustration and sense of aloneness in your journey. I have not been on the chemo drugs you have but can answer the question you posted.
    "Also, if I stop doing this, does it mean I am giving up on treatment?"
    I will say you are not alone with that line of questioning. I am positive each and every one of us have thought or processed through that exact same question. 
    Here is my own answer to it:
    No. It means you are choosing to live your life the way you want to and choosing quality over quantity. Only you can make those choices and weigh out the pros and cons of deciding on treatment or no treatment. The only reason I continue on my current treatment is there are minimal side effects. We have no idea if it is helping or not as my tumour markers keep rising and symptoms changing. I, personally, choose quality. If I can't do and interact with those I love the way I want too and am sick more often than times of feeling good or somewhat normal then I don't want it.
    These are hard choices to make. You live it and feel it so make sure you are comfortable with whatever your decision. It is never "giving up" should you choose to do nothing.
    Enjoy and live every day for what it is as we never know what is coming next.
    I hope you find comfort in the words I wrote.
    Take care of you.
  •  @Strongwoman Thanks so much for your reply. I don’t want to stop treatment, just this treatment. There must be treatments that can preserve my quality of life, even if it doesn’t push me into remission.. I am postponing the infusion on Wednesday until I can talk to my oncologist. I have a phone call with him on Thursday. I want him to explain why he didn’t tell me about the secondary cancers or the thrombophlebitis which I have had already, in the first week post infusion. I thought they had to tell you all the risks, particularly life threatening ones. 
    I have had nothing but problems since I was diagnosed. Kidney infection, uteral stents ( two ops ) pulmonary embolisms, bladder problems, gut problems, lots of pain, constant fatigue, atrial fib, nausea, and piriformis syndrome which is nothing to do with the cancer but is extremely painful when I put weight on my right leg.
    I don’t want a miracle, just a week or two where I could be well enough to go on a car trip up island ( Vancouver Island) to see its beauty again. With my husband. 
    I do appreciate that I am still here, and every pain free moment. My husband, my friends, my family, my moggies. The Salish Sea and the mainland mountains. My books, favourite tv programs and movies. But I can no longer sing and play music, paint, draw, make things. I can still write though.
    I am fed up with this. I think the only thing stopping me from MAiD now is my husband and not wanting to say goodbye to him. But if my quality of life continues to tank, even that might not be enough to keep me here. 
    I do appreciate having this place to share my feelings and not be judged. I may feel better tomorrow, who knows?
  • Hi, I've been reading much of this thread as it's very relevant to me right now. Two years ago I was diagnosed with Stage 3 High grade serous carcinoma. I had the total abdominal hysterectomy (hysterically abominable:) and then 6 rounds of chemo with carboplatin and paclitaxel. It worked and there was NED. I started on Niraparib but had to quit after 7 months as the side effects were intolerable. Once I quit, the CA 125 markers started rising. I told my oncologist, and she monitored it until my markers were over 57 I think (then they went higher). A CT scan showed recurrence, with it now on the liver, a lymph node, and pleural effusion. I had more bloating, some discomfort on the right side, discomfort bending down and breathing in deeply, and was shorter of breath. I noticed it too when swimming. But thankfully no real pain. Two weeks after the scan I was back on my first chemo, this time carboplatin and docetaxil. I always have allergic reactions so had a double dose of Benadryl during chemo, then more Benadryl at home for 3 days. The docetaxil caused painful mouth sores which morphed into oral thrush (I didn't recognize it as I'd never had it before) and a painful sore throat. Swallowing, drinking and talking were agony for days. I started taking Nystatin, but a day later ended up in ER with a fever and suspected strep throat (turned out it wasn't strep, but some kind of bacterial infection). My white blood cells were zero, so I was in hospital for 3 days while they treated me with antibiotics and injections of white blood cells. A week later I'm doing well:)
    My next chemo is in two days. My doctor said she would adjust the dose of docetaxil and I'd need to give myself injections of white blood cells. I've had a lot of support and prayers from friends and family and my church. But this time with recurrence I feel more fragile, like, I really do have a very serious disease and I'm fighting for my life. My doctor said my prognosis is 2-5 years. The first time I went through chemo I was naive - I thought, OK, I'll get through this and things will get back to normal:) I've done a lot of self-reflection and am at peace but sometimes I do wonder why I'm punishing my poor body with all this - is it worthwhile. I keep having to ask myself: what is my motivation, my goal? I do want to visit Scotland next year to see my friend, so I guess that's my goal:)