Frustrated : Hi everyone, I'm really frustrated... - CLL Support

CLL Support

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Frustrated

Hi everyone,

I'm really frustrated. I was diagnosed with CLL almost a year ago and am on W&W. I see my Oncologist every three months. My numbers have looked ok however my GP and my Oncologist can't tell me why I am feeling pain in my blatter/groin area. I have had just about every possible exam you can think of to try and find an answer. Other than having CLL and high Cholesterol the doc says I'm fine. My Oncologist dropped a bomb on me the last time I saw her when she said she didn't think the pain was related to CLL but she said maybe treatment would make it go away. I started keeping track of when I have pain and how long. So far it's been over a week now. I had scheduled an appointment for MD ANDERSON here in Texas last week for a second opinion but i had to cancel and reschedule it for next Friday. Folks I am a 48 year old male and I can handle a lot of pain but this is crazy. I'm lucky my job allows me to work from home because sometimes I can barely walk. Sometimes I also feel like I have a really bad flu and have to lay down all day until it goes away. I'm really frustrated because my numbers look ok but my symptoms seem to be worse

How long does one put up with it until you say I give..(.treatment)

You all are like my second family and you have been very helpful

Best Wishes,

Written by

BCTexas

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25 Replies

•

Justasheet19 years ago

BC,

You best keep that appointment at MDA. I don't know about your current doc.

Jeff

BCTexas• in reply toJustasheet19 years ago

Thank you

nvp8159 years ago

Hi BC,

I don't really have any great words of wisdom, just wanted to let you know I am so sorry you are in such terrible chronic pain. MD Anderson is definitely the way to go. Hopefully they will get to the bottom of what is causing your pain and get you on the road to better health. Let us know how the second opinion visit goes. Wishing you the best of luck.

Nan

BCTexas• in reply tonvp8159 years ago

I will ..thank you

Shortcake2• in reply toBCTexas9 years ago

Which dr are you seeing at MDA? I see Dr. Sam

thompsonellen9 years ago

I'm with Justasheet1 - keep that appt. From my experience, you get a totally different perspective from a world class CLL center. In my case, I have a rash all over my legs and arms that started when I was diagnosed 6 months ago. It was been getting worse and now it's like having 250 mosquito bites all the time. I am so itchy 3-4 times a day I can't see straight. I went to multiple dermatologists and was misdiagnosed. At OSU they said straight out it was from CLL and would likely resolve with treatment and they asked me to hold off until then. That was an answer I could live with, and fortunately, treatment starts soon. I think what I've learned is you need to be your own advocate and keep pushing for answers. I think you'll find them at MD Anderson. I'm also 48 and work from home.

BCTexas• in reply tothompsonellen9 years ago

I'm sorry you are having a problem with the rash. I guess we all have our own symptoms to deal with. I plan on going to MD and I hope they can shine some light on my situation. I wish you the best with your treatment. Stay strong we are all in this together.

BCTexas• in reply tothompsonellen9 years ago

Did you ask about non chemo types of treatment? I wonder if this is an option.

thompsonellen• in reply toBCTexas9 years ago

Strictly speaking, I'm not sure any of the meds being used are "chemo" - obinutuzumab, ibrutinib, venetoclax. 17p deleted patients don't respond to FCR. Plan A was ibrutinib, by my second opinion convinced me that given I have complex karyotypes and I am so young, I needed to do something more aggressive. Everyone talks about how great ibrutinib is, and it is, but if you are 17p deleted, you tend to relapse more quickly. Anyhow, I'm very confident this is the way to go for me even though it will be a pain to travel to Columbus once a week all summer.

kathypawpaw• in reply tothompsonellen9 years ago

Dear Thompsonellen,

I had a chronic rash also but around my eyes. It was chronic and bad. Made me look like I was 90 years old. Skin was really hard and wrinkled. Not a good thing. I had all my old fillings taken out and it went away. The skin around my eyes is soft and back to normal with no recurrence of the rash.

Kathy

thompsonellen• in reply tokathypawpaw9 years ago

Sounds awful. I'm glad it resolved.

9 years ago

The Texas Medical Center, of which MDA is a part, has 21 hospitals, 9 (or more by now) specialty clinics and 8,000~10,000 doctors. Ask the people there if they can get you a referal to a specialist somewhere.

BCTexas• in reply to9 years ago

I will ..thank you

wroxham-gb9 years ago

Hope that you soon get sorted. It must be awful for you to live with. Is it continuous or after food or any repeat activity. Probably been checked but a lot of people with CLL have problems with the gall bladder !!! Hope it i'sent . Let's hope they sort you soon.

My best wishes.

Sue

BCTexas• in reply towroxham-gb9 years ago

Hi Sue,

It comes and goes. I started taking notes on when it happens and for how long. It stopped hurting today. It lasted about 8 days. I never hear anyone on here that complains about this symptom so it has me a little concerned it could be something else. If it is from CLL it will be difficult for me to stay onW&W but I am doing everything to stay away from treatment although I may not have a choice. My hope is MD ANDERSON will be able to determine what the problem is.

Take care..best wishes

I will let everyone know what I find out

BellaBee10• in reply toBCTexas9 years ago

I was diagnosed because they ran tests to see if I had arthritis. Sometimes I would be fine, sometimes I would be limping, sometimes just pain in my lower abdomen. I had scans etc. All this went on for years before I was diagnosed with CLL. It's a very confusing illness. I wish you all the best with your appointments.

BCTexas• in reply toBellaBee109 years ago

Thank you..sounds similar to some of my symptoms.

barbkay17• in reply toBellaBee106 years ago

I have been getting pain in my lower abdomen/groin for a while also --at times can hardly walk after.sitting and also have just had Xrays to count out Arthritis--Interesting. What as you long term result as I see your post was from a while ago ??