English Community

@PaulineJ
  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. 

@PaulineJ
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. 

@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.

@PaulineJ
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 current 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.   

@Fearless_Moderator
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. 

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. 

@PaulineJ
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

@PaulineJ
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. 

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. 

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.
 <3 

@Fearless_Moderator
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?

@Hooodith 
  What type of cancer do you have?
LGSC or HGSC ?

@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.

@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

@Hooodith,
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.

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. 

@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. 

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:)

@Hooodith   I wanted to check in with you to see how you are doing and if you received any answers from your Oncologist.  You were beyond frustrated last post.  How are you doing now?  
Have your feelings changed about MAID and how you want to proceed or not proceed with treatment?  
This all is so tough.  Every single one of us can have the same treatment but have different side effects or how it affects us mentally and emotionally.  It sounds like the lack of being able to do the things you enjoyed is what is getting you down.  Have you been able to figure out what in particular is bothering you the most (ie/ a project you want to get done, go somewhere, see someone)?  
Here is a clip of a video and it is from a book entitled "Being Mortal" by Atul Gawunde.  I found the book very helpful and it has helped me to make decisions for myself as to what treatments I want or don't want, how I want to fill my days and how I want to go.  These are all difficult decisions and there is no one "fit all" approach to any of it.   I am posting the video below for you in hopes it may help.  I did a big dive into death and dying books, websites and videos when I found out I was recurrent and my timeline.  I learned a lot from all of it. I now know what I want and don't want and base my decisions around my quality of life.  It can be difficult at times and very rewarding at other times.  
Here is hoping you find something in this video that will help you along your journey.  
https://youtu.be/lQhI3Jb7vMg

I will be thinking of you daily until I hear from you.  Take care of YOU!

@Hobnob  Thank you for sharing your post. I will be thinking of you while you are at your next chemo appt.  Hoping also that the adjustments work and you don't react as badly.  
 It is a smack in the face sometimes when we really look at ourselves and see that we are ill and do have a serious illness.  This comes to all of us at different times and we all react differently.  
  I know from other posts that the subsequent chemo treatments affects your body differently as you have built a tolerance already from within. Others seem to go through it with minimal side effects.  
That is the million dollar question we all ponder at some point in time.  WHY ARE WE DOING THIS AND WHY ARE WE DOING THIS TO OUR BODIES.  Sometimes we reach a point and want to stop.  That is where the team and this forum helps.  To encourage one along and support your decision no matter what it is. 
The only one that can answer that is YOU.  Your body goes through it and same with the emotional/mental aspect of it.  
  I say if Scotland is your driving force and it is important for you to get there, well then DO IT!  Build yourself a dream board about it.  Look at it every day. Give yourself a pick me up and say I am going. We all have something or someone that drives us forward.  We have to figure it out and then always keep it in our site. 
Self reflection is both tough and rewarding at the same time.  Be proud of yourself for doing it,
Looking forward to hearing from you soon.
Take care of you!

@strongwoman 
Thanks for reaching out to me. I am quite depressed. Third chemo tomorrow and it seems to be working, so it isn’t that. Its probably the depressed phase of anticipatory grief. The losing everything and everybody at some point in the not too distant future. Yesterday the daughter of my close friend who died of cancer two years ago, came over to share her lived experience of the practical stuff we need to be working on. Very helpful, but the MAiD stuff worried me. I need more info about that. And I never had a real chance to grieve my friend’s death because five months later I was diagnosed. So some of this depression could be my missing her so much. My dreams are all about being left out of things. Last night I was denied a seat on a bus that all my friends were taking, who didn’t seem to care, and I had no way to get home. 

@Hooodith  Thank you for sharing and letting us know where you are at.  I appreciate being able to help support along your journey.
  Have you been able to speak to anyone about both the depression and anxiety you are currently feeling. If the answer is no, let me know as I believe I have some resource links that may be helpful.  
  That is both amazing and wondeful that you can and still write poetry. It is very kind and supportive of your friend to assist you with putting it together as well.
 I have not explored psycilocybin area at all. Is it supposed to help? If so how and with what. Have you chatted with anyone a out trying it?  If so, what do they recommend? If it is for you, safe to do so and your medical staff is aware then I would be curious to hear all a out it. Who would ever stop to think that this fungi would help in so many y different ways.  Perhaps it's all out there and we haven't fully grasped the enormity of what's safely available and how it may assist along with our current course of treatment.  When I told my plaintive doctor today she was supportive and positive a out it. That always feels good when they agree with you.
  I am Thankful that your hubby is so supportive as it makes it easier on us. Especially knowing we can lean on them when we  end to.
 As for the video, watch it when you are ready. Whenever that may be.  You will get there perhaps sooner rather than later or when you feel you can. All good be gentle with yourself.
  Finally and most importantly, don't apologize about how you are feeling. We can go through these patches and it is ok as long as we don't get stuck in them.  This forum is for all no matter what one may be feeling on that particular time or day.  Others may be in a different state but can help lift those of us that may be low up. No one lives and walks anyone else's life but they can sympathize and help support.  It is what the forum is for and we are friends helping friends
Hope you find some little nuggets in here that will help you along. Hugs to you from afar.  One day at a time and plan small achievable goals or fun things. You will get through this, all your Teal Sisters are here to help along the way.
Take care

@Hoodith  Never apologize for sharing how you truly feel. Not on this forum (we may not talk about it but we have all felt sad and angry and alone) and not with those people who are close to you. Pretending cheer serves nobody, especially you. Grieving is normal, being scared is normal given the immense implications of this ugly disease. Pain is real, as is the fatigue that comes with chemotherapy. 

Thank you all/both for your responses. Right now I am in the chemo suite, trying to write a poem about it. It really helps to write poems. Some of mine are serious, some are funny. The challenge is to whittle the publishable numbers down. Our local poet laureate has praised twenty and encourages publishing, but I have so many more, and some written since she reviewed my ouvre a few years ago. Would you like to read some of the funny ones?

Or just one?

@Hooodith  I would love to read whatever you send my way!

Or just one?

@Strongwoman Do you mean send to this particular chatroom?

@Hooodith  maybe send one here and the rest to me personally
Whatever you are comfortable with

@Strongwoman I don’t know how to send something to you personally

@Hooodith   This will depend on the platform you are on. On my phone, I click on round symbol that is me on the forum. Then you will see an envelope icon. Click on that and you can send a message privately. 
On your computer at the top right there should be an envelope icon which you will follow the same instructions as above.
 Same as here you put @ then the persons name to send it to them.
  Try a test one first to see how it works
Let me know if you need anymore help with it.

@Hooodith your dream is so powerful to me. That is how I feel too and although I have not had dreams about loss and grief a metaphor appeared to me suddenly, once I knew there would be no cure. It's likely inspired by all the sailing have fortunately been able to do in the last year.
I'm on a raft in water and watching all of my friends, family, coworkers, hopes, dreams, the world really, on the beach.  I can still see, wave and speak to them and often it feels like we are all together at the beach as the water is shallow and I could just get off and hop onto the beach again. But the experiences of living with terminal cancer keeps me from crossing onto the beach for all those reasons. In reality the raft is slowly drifting away. My husband is with me though, but on a different raft that is tied to mine. We are very close and its almost like we are on the same raft but not quite. At the end those ties will be cut and I will drift away leaving him as well. It's the saddest thing I have ever known. 
I hope this is ok to share this here as well as an earlier one about an airport runway the shortens and lengthens depending on disease spread and tests but I was moved by your dream and all of everyones experiences working with anticipatory grief and felt compelled to share here as well. 

OMG @mjmck21  how moving are your words.  It is a very clear depiction of what I feel it feels like. The spouse/children are on an outer edge and the rest further. How eloquent and deeply moving. Your words definitely spoke to me.
It is ABSOLUTELY ok to share here like that. It is what this forum is for.  Everyone and everything they experience. Whether that is good, bad or ugly. 
Thank you so much for sharing that. I will be rereading that often
 <3 

This is the poem I wrote today at chemo. I hope it doesn’t offend anyone.

Chemo Three

Eating cheese, I lounge in this vinyl recliner
pinned to this space by the tubes and the IV pole.
Bags hold the poison oozing through my veins.
Its called Red Devil and its found in shit.
Streptomysis Percesious.
A sort of fungus.

My nurse is Jennifer.
She got a vein in one fell swoop.
Watches me with eagle eyes
like the bird in the photo on the wall.

They have to robe up before touching the bags.
Double gloved in purple, draped in blue.
Protecting them from all my noxious nostrums.

 The volunteer offers me half a doughnut
and I choose the one with sprinkles.
It makes me think of birthday candles,
those days I’m running short of in this life.

Just half an hour to go, she says, and smiles,
expects my happiness that I’ll soon be home.
She doesn’t realise just how safe I feel
in this quiet caring nurse’s zone,
while my love gets walking time for him, alone. 

@Hooodith  Thank you so much for sharing. I loved it. How do you feel about the poem?
Is it one of your favorites or do you have another that is?

@Strongwoman Thank you for your reply to my post. You amaze me, how you answer all these posts, because you mentioned somewhere that you are palliative. Anyway, you have a special gift of listening to and encouraging others. 
My chemo was today - the oncologist tweaked the dosage of Docetaxil and I will have IV hydration for 3 days and 5 days of neutrophil injections. The flurry of phone calls yesterday and today between myself and the various agencies and health clinics to arrange all this was a reminder again of how much administrative busy-ness is involved in managing your own care. I'm divorced with no children, so I do have to manage my own care. Anyways, one day at a time! We'll see how the chemo side effects play out this time and I'll be quicker to phone the clinic about mouth sores. Right now my hair is falling out (again) and my clothes, bed, shower are all so messy. But having seen it grow back again gives me hope:) 

@Strongwoman Thanks for loving it. I like it because it expresses some of the ambivalence I feel about chemo and my love for the nurses who are so dedicated and kind to me. Also the last line is a foreshadowing I have prepared the reader for with the birthday allusion. It is a recognition 

of my husband’s one day always “walking alone”. 

@Hobnob  That is tough navigating this on your own.  I commend you.  Have you had the neutrophil shots before?  I have had one and it was a tough go after.  I felt so sore and achy right into my joints and felt generally unwell.  If you are receiving them daily, perhaps it will be a cumulative effect and not be so harsh as one shot dosage.  I hope that for you!
  Hair.....an issue at some points in treatment.  Losing mine actually hurt my scalp more than anything. It was shocking to see how much in one day it would come out.  A bittersweet joy when I took it all off with my son on the same day at home.  Joy in watching it grow back as well.  I imagine it would be like reliving it all again. Hope in it growing back is a good outlook.  It does come back, just slightly different than before in either texture, colour or straight vs curly.  Who knows what your new look will be! ;)

@Hooodith  I really enjoyed your spider poem.  Thank you for sharing.  You are a good writer and I can see why they will put together in a book form.  
As for your comment, "can anyone understand my feelings about that?".  Yes!  I understand totally.  I imagine you may be hopeful that the CT scan supports the findings from the CA 125 level and that you will not need the last 3 chemo treatments.  I feel that you may feel disappointed should you have to continue with treatment.  One might also feel different should treatments cease and be wondering how things will be monitored etc so that you do go backwards.  So much to think about and try to process including all the emotions that go with it.  
I found out that my CA 125 levels are still slowly climbing, weight is decreasing and CT scan shows minimal growth (so much so that they don't remark on it) and watching a new area.  Telling the news to people is tough and I have to watch my wording so that hopes don't get too high.  I have simply said to most of them, "my tumour marker levels are matching the CT scan results in that there is minimal growth so kind of stable in a way. We will take it for what it is and enjoy.  It is a 'win' for now."  I don't mention anything about my weight because they will either see that or they won't and I want to give them all a good feeling.  In hopes that they won't worry so much and enjoy times we spend together with less worry.  
Hope that helps and will be chatting soon!

@Strongwoman @Hooodith Just wanted to let you know that I have been receiving email notifications of your chat, as I started the thread ages ago when looking for perspective on the rise in CA125, and really appreciate the conversation and poetry. The poem about going through chemo expresses so well the ambivalence that I too have always felt. I see a direct line between the mustard gas used during WWI, soldiers dying in the trenches, and the “poison” coursing through my veins, so you are not offending me, @Hoodith , by any means!

i got through nine treatments of Carboplatin and the ‘Red Devil’ before my disease progressed. Now I have had five treatments of paclitaxel and Avastin. I found that loosing my hair this time was actually harder on me emotionally than last time (two years ago). I suspect the reason is that, deep down, the first time around I was still expecting that I would go into remission indefinitely, despite a diagnosis of stage four complicated by pleural effusions. Now I know that I am not going into remission, that the chemo is working to hold my disease stable. I still have hope, but of a different kind.

I also wanted to say, @Hobnob, that like you, being single after the end of a marriage makes a big difference on how I experience my disease. I have adult children who live a day’s drive away and more, so I rely on friends and one of my siblings for support. It is tough going to medical meetings and treatments alone, though. Despite these challenges, I am always amazed by our strength!

@PaulineJ @Strongwoman Thank you Strongwoman  for your feedback on my poem. And understanding my ambivalence about the possibility of not needing more chemo. You hit all the numbers. And I get your concerns about others’ feelings about your current state. That is one of the difficult aspects of this disease, not that we’re short of them, LOL. Caring about our loved ones and needing to be so skillful in what we say, and how we say it. I hope your results continue to show stability.
PaulineJ I appreciate your feedback about my poem. It is so good to know that people “get it”. I too have stage 4 with pleural effusion. The latter was my signal that I was in a recurrence. I too imagined a long remission. I suppose its part of the denial we need to go on with hope in our hearts…
Best wishes for a successful outcome of your treatment, whatever that looks like for you.

@PaulineJ  It is some of those 'little' (what some call them) things that matter to us. For us, it is a signal of some sort, a place where we now have to face and accept what is occurring and determine what that path looks like for us.  For you, it was your hair, for others it could be something else.  These are our catalysts that propel us forward even if we aren't ready emotionally.  They are difficult and even more difficult for us to accept.  What is "just" hair for one person means so much more to someone else.  No one knows all these things/experiences like us going through it.  It is difficult. I find it heartfelt to read that you have figured out where those feelings came from.  That can be difficult to see when we are "in it".  
HOPE--a feeling of expectation and desire for a certain thing to happen   That is the dictionary meaning of it.  Whatever that looks like for each and everyone of us is different and sometimes we get disappointed but then we set the goal post again.  It is ever evolving.  Like us.