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Hi Ladies,

Well, I had my second pleural effusion drainage (thoracocentesis) 4 days ago. I was very short of breath with any activity, but less coughing this time. I also have a very low hemoglobin,  so I thought that was the reason for my tiredness, low energy and shortness of breath.  

I was sent to the hospital because of my low hemoglobin,  and while there, my latest CT scan results came in showing a large pleural effusion, so they drained 1.5L from around my left lung.  My hemoglobin was 72 at the time,  and their protocol is to not do a blood transfusion unless it is below 70, so they gave me an iron infusion instead. 

I don't know if anyone has had a similar experience? 

I am still very tired and I cannot do 1/2 of what i could just a short time ago. I take a shower (with a shower chair) then have to rest. I am a little down with all this! 

Before I begin, I can’t say how amazed I am at everyone’s resilience and determination to fight this beastly disease. I wrote some time ago that I had a radical hysterectomy back in July last year followed by 3 of six treatment of plaxitil/carboplactin. I was diagnosed with high grade serous stage 3 ovarian cancer. They stopped my chemo just prior to Christmas because of low blood issues and breathing. Since my last treatment on December 23, I have had only bloodwork, and approx. 5 transfusions. In April I had a bone marrow biopsy which was inconclusive, a second one on June 16 indicated I had T-GLG form of leukemia/lymphoma and today I will start a treatment plan of one pill a week (not sure the name since I pick it up at the pharmacy this morning, along with weekly bloodwork and folate supplement. This will take about four months until they see noticeable improvement. Next month I will have my second five month ct scan. My CA125 is still at 7. So Sylvie I share your frustration of formerly being active down to weakness and breathlessness even after going up a flight of 8 stairs. My hemoglobin count has been steadily around 72 and as low as 59. While I’m happy to see an answer for the blood issues I am worried at the lack of cancer treatment since December to the point it is consuming me. I have never been informed if immunotherapy, other forms of cancer treatment can be started. I’m not tech savy and if I google it is overwhelming and don’t know if it’s fact or fake. I feel like the elf on the shelf waiting for someone to find a treatment towards at least some freedom and peace constantly wondering when and where this disease will strike next. So Sylvie let’s breathe together and hopefully we can have this behind us. And for all the ladies in this forum, continue the fight and I do admire your courage and determination. ❤️ Jean
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I agree with you Jean 

one day at a time 

 I enjoy and take advantage of the good days and try not to dwell too much on the what next 

Together we are stronger🩵

Sorry ladies, brain fog and spelling issues. Diagnosis for my blood issues. T-LGL leukemia a form of lymphoma!
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Hi Sylviequebecbc

i am s sorry you are dealing with this 

I had Pleural effusion in te emergency department  even befriended diagnosis the first time they drained 3 Iitres from my right lung and 3weeks later another 1.5 litres.

after my surgery full hysterectomy including omentum 

I have not had a reoccurrence. It I do remember that I was so short of breath and could barely get through. A shower and would have to sit down

Hi @asatino

Can't imagine how you were feeling before your 3L drainage!  

Stay strong ❤️

@Sylviequebecbc I'm so sorry for what you are going through. It is clear that others have been through this and/or something similar and I'm glad they have been able to share their voices. I hope that your energy will start to come back. Thinking of you.

Hi @Sylviequebecbc ... I'm checking in to see how you are doing? How is your hemoglobin level? Hopefully it's moved into the normal zone and you've got some energy back. Please let us know how you are progressing. Sending you healing hugs. 

@Alwayslearning

Hi! I am doing ok I guess given all that has happened lately! My Hemoglobin is still trending down, even after 2 transfusions and an iron infusion. I may be bleeding from my bowels we think now, my stool is dark and there is some blood i can see. My oncologist said to follow-up with my family doctor about this, and he said we should keep an eye on that, stop my anticoagulant for a few days if my hemoglobin drops 10 points from last week (and it did, now 89), said maybe a colonoscopy might be too bad for me right now, but if the bleeding gets worse, we might have to do one. The one thing we wonder about is if they find that my cancer has invaded my bowel , are they going to do anything about it? I may not be a candidate for surgery at this point,  so what next? 

I think I will contact my previous oncologist and ask for his opinion....

So one day at a time! 

Take care 🙂 

@Sylviequebecbc Have you asked about a CT colonoscopy? I had one when I developed an abscess after a bowel resection. It’s not nearly as invasive. (My gyne oncologist says I will probably have another one in September, once chemo is finished, because it seems the tumour has created a fissure into my small bowel.)

Take care

Thanks GGail,

I will ask about that!

And, of course, it’s a possible ‘fistula’ I have, not ‘fissure’. I don’t know if I should blame autocorrect or chemo fog. 😆
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@Sylviequebecbc I'm so sorry to hear that you are still being challenged with low hemoglobin levels and the unexplained internal bleeding. It seems strange but also maybe reassuring that your oncologist wasn't sending you to emergency however, it is no doubt still very unsettling.  Hopefully your current oncologist can clarify what might happen if the cancer has invaded your bowels however try to be hopeful it's not that. I know how important it is to advocate for ourselves including getting answers so it sounds like contacting your previous oncologist may be helpful in your family doctor and/or current oncologist are not addressing things as you would like.

I do hope you get some answers soon. I know that stress on top of everything else is definitely not fun.

Sending warrior strength your way. 

Thanks everyone for your replies and support! Means a lot.

I had another thoracentesis (partial) 3 weeks ago, they couldn't drain it all because I was not well, my body started shaking, so after 1.5 L, they stopped. The downside is I will have another one soon, my GP wants it done within a  week, still waiting for an appointment.  

I am now on a blood transfusion schedule, every 2 weeks, as long as my hemoglobin keeps dipping. I have had 5 or 6 transfusions so far. I started my new treatment under the POG study, immunotherapy,  which I get once per month. My next infusion is next week. I just hope it will help! 

I am unable to eat much these days, vomiting more. Loosing weight  and feeling weak. A home care nurse is coming today to start me on Maxeran injections, hope this helps. 

That is for me right now, trying to stay positive! 

@Sylviequebecbc I'm so sorry for all you are going through. I do hope the immunotherapy will help. Sending lots of positivity your way.

@Sylviequebecbc

Hi there. Thank you for sharing the info on levels required for blood transfusion. Did the iron injection help you?

I found that my thoracentesis helped with my legs which was something that was really bothering me. It was becoming so difficult to do anything without resting. I'm sure the fatigue and shortness of breath played a role too but my legs were just not up to doing anything. So it was a relief to have my legs back again. Having said that, they are still not 100% but much better than pre-drainage.

I too am feeling the fatigue and my blood counts have been all over the place. Since I am now going to be changing my treatment plan to better manage my cancer and, hopefully, reduce pleural effusion occurrences, I will discuss what to do about my blood counts when I see my Onc.

There are just so many things that play a role in how we are feeling, it is sometimes hit-and-miss with the appropriate resolution. Meanwhile, we continue to feel crappy. I understand how this is affecting your outlook…I'm also feeling down with my current state.

Fingers crossed that you will receive the treatment needed to help improve your fatigue and low energy levels. 🥰

@GloHo I know you have been through and tried so many options. Of course you are feeling down. Your body and mental fortitude are being challenged. I want to reach out and give you a big hug. Let's just say I'm doing it virtually. Please stay strong. 🙏🏻🤞❤️