1. < Blood Cancers & Disorders

Blood clot disorders: How does this affect your quality of life?

Posted by yvonnekim @yvonnekim, Mar 27 1:03am

I have 3 blood clot disorders is that common? I have not seen a Dr since right when covid started or been on medication.How will that affect my life quality

Interested in more discussions like this? Go to the Blood Cancers & Disorders Support Group.

sudutoo | @sudutoo | Apr 13 5:54pm
In reply to @sudutoo "I think it is quite interesting that many blood disorders seem to be somewhat discovered by..." + (show)
@sudutoo

I think it is quite interesting that many blood disorders seem to be somewhat discovered by accident with no symptoms shown. It might be a good idea that people voice on how their condition(s) have been discovered and how long ago.

Jump to this post

I once approached my GP about treating symptoms, which is the medical tactic, and not treating the disease; his response was that often times, all that there is to go on are the symptoms: therefore treat them (the symptoms) the best as you are able.

REPLY
susangourdlady | @susangourdlady | Apr 13 7:28pm
In reply to @susangourdlady "I am still on Xarelto, although at 10mgs instead of 20. I am also still on..." + (show)
@susangourdlady

I am still on Xarelto, although at 10mgs instead of 20. I am also still on Plavix. Medication for pain is a problem for me because I can't take NSAIDs. I have, and have ended up with blood in the toilet....

I have a very involved degenerative disk disease in the lumbar spine with scoliosis. The neurosurgeon I saw said the 6-7 hour surger would be too much for me since I have Factor V Leiden and I am 73 and have a moderate kidney disfunction. He is sending me to a radiologist who administers epidural steroid shots and I will get 3 of them at L1/L2, L3/L4 and L5/S1. This will be scheduled once the radiologist has contacted my hematologist to discuss a bridge plan. I also have severe osteoarthritis in both knees and the orthopedic surgeon would not do surgery...on and on. So I do have quite a bit of pain. I am in the process of getting off- loading knee braces and that may help. I had ablations for both knees, but the pain relief does not last very long for me at all.

I no longer experience my femoral artery disaster as PTSD. My husband was wonderful with me by listening patiently and reviewing what happened to me. So that was great!

Jump to this post

Hugs back to the 2 of you and thanks.

Susan

REPLY
nypara66 | @nypara66 | Apr 14 6:56am
In reply to @yvonnekim "And I’m in menopause I’m don’t think you can take medication for that with the clotting..." + (show)
@yvonnekim

And I’m in menopause I’m don’t think you can take medication for that with the clotting disorders

Jump to this post

Hello I saw your comment and wanted to reply. I’m 57 and have PolycythemiaVera. I’m in full flown menopause. The tingling and aches and hot flashes are crazy and constant. I was told from my oncologist NO HORMONES. So I tried non prescription things they recommended but they didn’t work. Blood clots are a serious concern. I wanted to let you know I was prescribed Clonidine for the hot flashes and it has made a huge difference. This is kind of off topic but I thought I’d share. It’s a blood pressure med that’s been around forever and super cheap. I don’t have high BP and it only lowered it by 10 points or so. I take .1 mg twice a day. You can Google it. I wish you luck with your illness and this change too!

REPLY
susangourdlady | @susangourdlady | Apr 15 4:37am
In reply to @slkanowitz "Susangourdlady, the epidural steroid injections should help a great deal so relief should be coming! As..." + (show)
@slkanowitz

Susangourdlady, the epidural steroid injections should help a great deal so relief should be coming! As for your knees, has the orthopedic surgeon discussed the possibility of hyaluronic acid gel injections into the knee joints? These can provide some relief for awhile when knee surgery is not possible. I believe they are safe when on xarelto. I would ask your Dr about them.

Jump to this post

Thanks! I will ask him about hyaloronic acid gel injections.

REPLY
loislillypadd | @loislillypadd | Apr 16 11:28pm
In reply to @sudutoo "I think it is quite interesting that many blood disorders seem to be somewhat discovered by..." + (show)
@sudutoo

I think it is quite interesting that many blood disorders seem to be somewhat discovered by accident with no symptoms shown. It might be a good idea that people voice on how their condition(s) have been discovered and how long ago.

Jump to this post

I had a CT scan for the possibility of follicular lymphoma, which was positive by biopsy. But in the CT scan they saw multiple small blood clots in my lungs. That very evening I was started on blood thinners. I have no symptoms. I understand with lymphoma cancers, that blood clots are a possibility.

REPLY
1 reply
Mentor
Lori, Volunteer Mentor | @loribmt | Apr 17 8:51am
In reply to @loislillypadd "I had a CT scan for the possibility of follicular lymphoma, which was positive by biopsy...." + (show)
@loislillypadd

I had a CT scan for the possibility of follicular lymphoma, which was positive by biopsy. But in the CT scan they saw multiple small blood clots in my lungs. That very evening I was started on blood thinners. I have no symptoms. I understand with lymphoma cancers, that blood clots are a possibility.

Jump to this post

Welcome to Connect, @loislillypadd. It was fortunate that your doctors discovered the small blood clots in your lungs in time to treat them. That revelation had to a bit frightening for you, I’m sure! Did the scan also show any other lymph node involvement with your follicular lymphoma besides the node that was biopsied?

We have a number of members in Connect who also have Follicular Lymphoma. If you haven’t seen some of the posts already, I’d like to introduce you to @traceyt @caracello22 @puddknocker and many others who have FL and share their experiences in this discussion:

>Follicular Lymphoma: looking to connect with others.
https://connect.mayoclinic.org/discussion/follicular-lymphoma-at-age-44/
~~~
Another discussion was started with @valandsheri when Val required treatment for his Follicular Lymphoma. Here is that post:
~Starting Bendamustine and Rituxin for Follicular Lymphoma
https://connect.mayoclinic.org/discussion/starting-bendamustine-and-rituxin-for-follicular-lymphoma/
Follicular Lymphoma is generally slow to develop and in early stages often doesn’t require any treatment. How long ago was your diagnosis? Are you in the ‘active surveillance’ period or are you in treatment besides being on blood thinners?

REPLY
loislillypadd | @loislillypadd | Apr 17 8:42pm

This is my 3rd adventure with cancer. 2009 it was thyroid cancer. 2020 it was breast cancer, and then this pass fall i palpated enlarged lymph nodes in my left groin. This was confirmed by biopsy to be a follicular lymphoma in my left groin and also in my right axillary area. An earlier CT scan picked up on numerous small blood clots in my lungs.
A point of interest is that my husband died October 20, 2023 and I got a sure diagnosis 10 days later of the follicular lymphoma.
I thank you for your interest, and I’m sure this feed will be supportive and enlightening.
I am in treatment, for it was advised at 75 years of age It is better to do my treatment at my present state of health rather than surveillance. I have had five treatments thus far with her BENDEKA, & RITUXAN. I have three more treatments yet to go.
I appreciate the contact information you’ve given me and will surely follow up. Lois

REPLY
1 reply
loislillypadd | @loislillypadd | Apr 22 4:52pm
In reply to @loislillypadd "This is my 3rd adventure with cancer. 2009 it was thyroid cancer. 2020 it was breast..." + (show)
@loislillypadd

This is my 3rd adventure with cancer. 2009 it was thyroid cancer. 2020 it was breast cancer, and then this pass fall i palpated enlarged lymph nodes in my left groin. This was confirmed by biopsy to be a follicular lymphoma in my left groin and also in my right axillary area. An earlier CT scan picked up on numerous small blood clots in my lungs.
A point of interest is that my husband died October 20, 2023 and I got a sure diagnosis 10 days later of the follicular lymphoma.
I thank you for your interest, and I’m sure this feed will be supportive and enlightening.
I am in treatment, for it was advised at 75 years of age It is better to do my treatment at my present state of health rather than surveillance. I have had five treatments thus far with her BENDEKA, & RITUXAN. I have three more treatments yet to go.
I appreciate the contact information you’ve given me and will surely follow up. Lois

Jump to this post

Thank you for your hugs.

REPLY
View MoreView Less
Please sign in or register to post a reply.