Eithne01,
The treatment of chronic myeloid leukemia (CML) has changed significantly since the late 1990s, with the development and subsequent approval by the Food and Drug Administration of imatinib (in 2001), the first of a class of medications called tyrosine kinase inhibitors, which target the specific abnormality that causes CML.
Before that time, patients were treated with other therapy, including interferon and bone marrow transplant, and had very poor outcomes.
I had an uneventful C-section 5 yrs ago. Last May I had a large desmoid tumor removed from my stomach muscles. Surprisingly, I am now 5 months pregnant and have been feeling pain in the right abdominal region in the same area where the tumor was. I am assuming that my stomach muscles have not fully healed internally and as I am stretching it is causing issues. Should I be worried? Generally what is the recovery time for stomach muscles to fully heal after major abdominal surgery?
In June of 2007 I have a giant agressive Desmoid (paraspinal tumor) that was growing up against my spine removed (it was huge) again no "malignancies" but there were cells outside the margin leaving the real possibilty that it would return. In December 2007 they discovered a small desmoid tumor on the outside on my Jpouch but decided to leave it alone for now. I have had several more FAP polyps removed from my colon that had they had to burn the conective tissue.
Are you currently on any medication like imatinib? The neutropenia can be due to your current medication. You can ask your hematologist for G-CSF injection if you have persistent neutropenia. Patients with CML are immunocompromised and can easily acquire infections. Neutropenia also puts a patient in an immunocompromised state.
For now, it is very important to prevent acquiring any infection. You should avoid crowded places and persons with ongoing infection.
Good luck.
Plus two MRI with no evidence of that mass. Last US suggested that it could be a desmoid tumor. I am scared, because in the mean time my symptoms got worse. Pain and heat and burning sensation in the left lower quadrant much stronger and present almost every day. Pain now radiates to stomach, sometimes right side, in to the left hip are. I have better days, when pain is mild and worse, when I am looking for the painkillers (which are not helping).
Hi.
Chronic Myelogenous Leukemia (CML) is a blood disorder caused by an acquired genetic defect in the pleripotent stem cell. It has several phases: indolent chronic or stable phase, aggressive or advanced phase, and accelerated and blastic phase. The transition between phases may take years (on the average, 4 to 6 years from the stable phase to aggressive phase).
Average survival rates are generalizations, not applicable to a particular patient. The prognosis is relatively good. Newer techniques are being tried, including imatinib and stem cell transplantation.
All the best, and God Bless!
My eldest son was then diagnosed @ 16, had his colon removed, developed a Desmoid Tumor (caused by removal of the colon) and died at 31, leaving 2 little boys behind. When my eldest grandson was 10 (1 year after watching his father suffer and die) he was diagnosed. Like his father he had many problems, and 38 surgeries by the time he was 16! He developed a 38lb Desmoid tumor which was removed, but he was dying.
There are many facets to FAP, and if you google this you will learn a lot about it. My husband had developed colon cancer along with his brother in their 30's and this is when we learned that FAP was in the family. My youngest son had his colectomy at 12, my oldest son at 16 and my grandson at 10. A serious side effect of having FAP is developing Desmoid Tumors. They aren't cancerous but they grow in a way the invades and crushes other organs so they may as well be cancer.
Hi Mimi, i am 47 yrs old and was diagnosed with fap about 3 or 4 yrs ago now, have had 2 colonoscopies and have been told i have over a hundred polyps in large bowel and just a few in the rectum, Surgery has been planned for september of this year (2012) with removal of all the large bowel, will keep small bowel for now. Have high risk of desmoid tumours , so the doctors and nurses will be keeping a close eye on this.
Most of my brothers and sisters have been diagnosed the same.
TY for the reply. Yes I was told and am thinking that its parasitc or allergy. I went to aruba in June but that wouldn't have an affect on me now, would it?
Your profile struck home because I to had a previous surgery for a tumor, mine was a desmoid. Hope all goes well for you.
Hi, we have FAP in our family, my husband died from it at 32, my son was diagnosed at 16 and had his colon removed and we lost him to a Desmoid Tumor (another facet of FAP) at age 31. My youngest son was diagnosed at 12 had his colon removed and is 39 now. He has several polyps in his duodenum which they have been watching for years. They normally don't become malignant in this area but can. My grandson was diagnosed at 10, and we lost him last year at the age of 18, also to a Desmoid.
Feeling he knew his body best, we agreed. What they thought were adhesions was actually a 28lb Desmoid Tumor! The tumor was discovered during an earlier surgery, and they failed to tell us this at the time. Now, it had invaded and was crushing his major organs, and he was dying. It's a very long story, but it all goes back to them withholding medical information.
Therapy with corticosteroids is used for the treatment of most and additional therapy is available and dependent upon the type of HS. Newer medicines such as imatinib and mepolizumab are said to be promising. So, should your son have HS, there is reason to be optimistic regarding a positive response to currently available therapy.
You should request, of his doctor, an additional explanation for the tentative diagnosis of pre-hypertension.
Good luck.
Hi,
I've been scanning through the forums and feel comfortable sharing my pain issues with you folks. Hopefully I can obtain some feedback on medicine/support. I'm currently 25 y/o and am experiecing all types of moderate to severe pain inmy right leg (behind the knee, along calf/bone, ankle and toes).
Background:
I was born with a non-cancerous tumor known as "Desmoid" in the soft tissue of my right calf.
They left this decision totally up to us as his parents. We opted for the surgery, which revealed a very large Desmoid Tumor that was crushing his major organs. We lost him soon after. So, I am a big advocate of second opinions and educating yourself on any procedure, medication, illnesses. You have to remain open minded, but it arms you with the knowledge to ask all the correct questions, and get answers, and make some choices of your own as you are doing! Best of luck to you!
Does someone else in your family have FAP? They are only able to locate the mutation in 70% of patients. Many years ago when my husband was diagnosed with colon cancer and died at 32, and his brother at 38, did they realize what this was. They were never able to locate the mutation in my deceased son, or grandson. My surviving son has been tested several times, twice this year, and no mutation found for FAP, they say it's there because he has the disease.
I had 2 sons and a grandson that had to have their colons removed at a very young age due to FAP. I lost my son and grandson to a Desmoid Tumor but my almost 42 year old son is doing very well and he says it's all about diet. He is an ultrathoner, avid hiker and mountain biker so he can't be bothered with numerous bowel movements a day...he knows what makes him go and what doesn't and it's different for each person.
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