Malignant pleural effusion?

[Minh]

Another three months have gone by. My struggle to recover from lobectomy complication continues. Now I can walk about 20 minutes without running out of breath which is great improvement. I used to only able to walk for 5 minutes. My arms range of motion and strength also have improved. I can workout with 3lb dumbbell for about 5 minutes. The chest and back pain is still there, but the medications seem to help. Overall my conditions have improved in the right direction. I have completed in home therapy and now scheduled to have pulmonary rehab in outpatient center. But I have to wait for patient backlog to clear out due to recent respiratory wave. It could take another month or two.

I pray for everyone here to get well! Cancer really sucks!

[Justin1970]

Glad your feeling a bit better I hope the chest and back pain gets better soon aswell, be good when you can start rehab, goodluck with everything and yes your right cancer really does suck

All the best Take care Justin 

[LouT]

Minh,

Keep on pushing yourself.  You're making great strides with good results.  It's great to hear this.

Lou

[LilyMir]

It is taking me a very long time to recover from lobectomy, which was back in April. I started rehabilitation exercise under supervision and it is helping me a lot, especially with confidence and anxiety. I try to increase my activity but it is very hard as I hate feeling out of breath, especially with masks when out and about but I push myself a bit more every day. Also trying to do indoor exercise with my kid's game console. Everything helps but one should take it slow and be consistent. I am still struggling with consistency.

[Tom Galli]

Well done Minh.

Stay the course.

Tom

[BridgetO]

Your progress sounds really promising! Keep up the good work!

[Minh]

Happy Easter!

I have just finished both home therapy and outpatient pulmonary therapy. My shortness of breath condition is somewhat improved. Not to the level I expected, but I take what can get. Now I can walk up to 30 minutes and take shower without a chair. I can do some light choirs such as cooking, laundry, and dishes. I still have shortness of breath with exertion, chest pain, lower back pain, and lightheaded. The lower back pain is getting worse, and doctors could not determine the cause. And now I started getting random infrequent (once a week) bright red wipes after bowel movement (with no pain). Not sure why, but I am thinking recurrence somewhere, a scary thought. Can’t wait until my next surveillance CT scan in July. I am very worry.

Does any one here know if CT scan can see tumors in lower back bone and GI tracts? Could I have metastatic tumors somewhere in my back and my colon? Welcome any inputs. 

[LilyMir]

I am not sure about CT sensitivity for GI tumours, though expect it is sensitive for bone mets, but you should ask your doctor. What I don't understand is why they are not scanning you earlier if you have worrisome symptoms. July is quite a wait. I was always told scan frequency is subject to change based on symptoms. Is the blood bright red? Sometimes this indicates a haemorrhoid. Blackish blood comes from deeper in the GI as I understand but any blood should be thoroughly investigated, even if the reason is related to inflammation, drug side effects etc.

[Karen_L]

Given how sick of doctors you are, what I'm going to say will be a major bummer. Bright read blood means you need to contact a doctor immediately. If you have a gastroenterologist, that'd be a good place to start. Hang in there-- you are amazing. 

[Minh]

Thank you all for info. and support. For some reasons, waiting list for dr. appointment is very long. I had to wait for 10 months for my pulmonary rehab. I have to wait until Mar/2024 to see a pain management doctor. And cardiologist will take 6 months. I will see my PCP for bloody wipes and see what to next. My next worry is 4 cm cyst on the kidney. From the previous CT scan, they told me it’s benign. It seems like I am on the waiting list for something to happen…

[LilyMir]

A year wait for pain management doctor? This is not right, terrible care. Can't you change care provider? As for blood in stools, if this has not been a one off, I imagine should be treated as very urgent to investigate. I had no idea US system has such huge delays in care. Do you not get followed up with oncology?

[Minh]

Yes I have been seeing oncologist every 3 months or so. He referred me to pain management. I just got a call from them today and they will try to get me in soon within couple weeks or so.

For bloody wipes, it happens about once every two weeks. I was told by PCP to eat more fibers. Let’s see in couple of weeks if it goes away.

[Minh]

Dear warriors,

I have been in and of rehab for multiple issues. I went to ER May 2023 for heart racing issue. My heart rate went up to 150 bpm. CT scan of the lung was completed and no blood clots found. They found nothing after the whole day. They gave me some IV beta blocker and then sent me home. No other obvious issues except for total exhaustion. Then in Sep 2023, I got pneumonia and went to ER and stayed for 3 days. My shortness of breath increased 10x. Prior to pneumonia I was able to walk around inside the house. After pneumonia and can’t even walk to the garage without gasping for air. When I eat I get really tired and I have to eat multiple meals to keep up with daily calories. I have to cancel my MD Anderson followup scan because I don’t think I can walk through airport.

I have questions for all. How can I regain all the weights I lost? Because I have to take breaks during meal and I lost appetite. I have been drinking all kind of weight gain shakes. I used to love McDonald French fries. Now it doesn’t taste good anymore. Same thing with Big Macs and other fast foods I like. My doctors want me to gain 10lbs. Please give me a list of foods, snacks, and drinks to consume. I would eat anything to gain 10 lbs. Thank you!

[Tom Galli]

Minh,

During my treatment when I struggled with no appetite, my wife fed me homemade ice cream 3 times per day. She boosted the normal, over-the-top, ice cream calories by adding a whole package of crushed Oreo cookies to the churn. This put on the pounds pronto.

Stay the course.

Tom

[BridgetO]

If you can tolerate a lot of dairy, I suggest premium ice creams (high in fat!). And add butter and cream to anything you can. Potatoes mashed with butter and cream!  If my doctor told me to gain weight, I'd eat a lot of See's chocolates. Also caramel sauce and fudge sauce straight from the jar. Of course I understand that a lot of this stuff might not sound good to you right now. And it may not be "healthy" but it has a lot of calories.

You might also ask for a referral to a dietician/nutritionist for recommendations on food for weight gain. 

Hang in there, Minh, you've been through a lot!

[tgif i guess]

i had lost 60 pounds before my diagnosis - after a year i have gained it all back

we sound alike - we are grease and salt people.  i could pass on the sweet stuff 

the chemo changed that - i still recall how good a hamburger tasted - the reality of eating one is a disappointment - tasted more like my yeti cup

then i discovered peanut butter and chocolate - still tasted like peanut butter and chocolate

those that love you will crawl over broken glass to get you something you enjoy, so my sisters buried me under reese's peanut butter cups and peanut butter m&ms - i keep them beside my bed and eat them on sleepless nights

i also drink an ensure (original) twice a day - calorie dense and i like the thicker consistency - hoping the vitamins might help too

i look for foods that might not taste exactly as they once tasted - but are not offensive - and eat them even though its not the same as i remember them

[Minh]

Thank you all for suggestions.

I have tried everything you have recommended. I also talked to dietician multiple times for help. My main problem is shortness of breath that leads to other problems such as eating, swallowing, potential choking, and fatigue. They told me to learn belly breathing which I tried and it doesn’t help. When I eat I have to belly breath and swallow at the same time which can potentially cause choking. I have to swallow quickly and return to breathing. It very difficult for me to eat with shortness of breath. Usually I get tired quickly when eating meal. So I tend to hurry up and eat as fast as I can before I have to take a 15 minute break. One meal can take up 1 1/2 hour. 

Are there anyone out there that have same problem like me? Shortness of breath that causes eating problem. What should I do? Doctors keep telling to learn deep belly breathing which I tried and did not help me at all. Help!

[BridgetO]

Hi Minh,   Im sorry you've had so many  challenges! You're really hanging in there. Good for you!

I have a suggestion for the swallowing issue. Have you seen a speech pathologist? Many people don't know that speech paths deal with swallowing issues as well as speech. It makes sense since the muscles involved in speech and swallowing and coordinating those with breathing are the same.  I've worked with a  number of people with disabilities that caused swallowing problem with choking risks and helped them get set up with a speech pathologist for help with this. 

You could ask your doctor for a referral.

keep hanging in there.

[Minh]

Hi BridgeO

They sent me two different swallow tests and both tests confirmed no abnormality. They recommended me to chew foods carefully and eat 8 small meals per day instead of regular 3 meals. Every time I swallow, it seems like foods go down slowly and if I have slight cough the foods would go back up which can cause vomiting and choking. Most of the time I have to double swallow or take a sip of water. I am not sure I can gain any weight if my eating is like this. I cannot keep losing weight. They also recommended belly breathing which I religiously follow but it doesn’t seem to help. Funny thing is I can walk on treadmill for 15 minutes without difficulties. But if I walk from living room to sidewalk in front of my house, I would get very winded, whole body weakness and stiff chest, stomach, and neck. Sometimes I feel like high pressure builds up in my head every time I gasp for air and my head will explode. This shortness of breath is really difficult to deal with. I need more tips how to eat and increase weight with sob issue.