| Author | Post |
|---|
destiny
Member
| Joined: | Fri Apr 24th, 2009 |
| Location: | |
| Posts: | 13 |
| Status: |
Offline
|
|
Posted: Fri Apr 24th, 2009 08:09 pm |
|
I was diagnosed with MM at the age of 48 and i am now 50. I go to the Seattle Cancer Care Alliance and recently the flow cytometry showed plasmacytoids, (I have IgA Lambda myeloma) I have had 2 bone marrow biopsies, the first of which was torture. Doctors are taking the watch and see approach because of my age.
Last Tuesday they did another flow cytometry after all the usual SPEP tests etc i have been followed every 3 months, and it shows the neoplasm now my understanding if i am correct is that the bone marrow is full and so now the cancer cells are getting into the blood stream where they can be seen ,is this right?
my total protein is up but the M protein is stable and small at only 0.7 so im all for waiting on chemicals and transplants however the IgA is high and the M is low and the G is going lower and i have hypogammaglobulemia.
what would anyone suggest? and what do i ask the docs? Im losing faith in my Dr. I know she is busy but if your gonna call then call.
thanks
des
|
dawg fan
Member
| Joined: | Sun Mar 29th, 2009 |
| Location: | |
| Posts: | 7 |
| Status: |
Offline
|
|
Posted: Sun Apr 26th, 2009 07:11 pm |
|
Des, Have you had skeletal surveys or MRI of your bone marrow? It seems this would be the next step if you haven't already.
Your situation is very similar to my husband's and he has also been seen at Seattle Cancer Care. We had lost faith in our physician down south and went up there for second opinion.
The problem with these situations like your and my husband's are it seems you are in "grey" areas. You're right to say you don't wnat to start treatment if you don't have to. It's a path you may not be able to get off of onde you start. If however the MMis affecting your bone or other organs then whatever your other numbers are, it's time to treat.
The most important thing you said however, was "I'm losing faith in my doctor." PLease search out another one you can communicate with. There are many docs in the Myeloma Clinic there. you should be able to find one you can be more comfortable with.
Dawg fan
|
destiny
Member
| Joined: | Fri Apr 24th, 2009 |
| Location: | |
| Posts: | 13 |
| Status: |
Offline
|
|
Posted: Mon Apr 27th, 2009 06:39 pm |
|
dear dawgfan:
Thank you for the reply to my post. Who does your husband see at SCCA? I am in that grey area of watch and wait. I am not ready for chemo because honestly the way i feel i wouldnt survive it. I am tired all the time and get sick easily because of the immune system. I see Dr pamela Becker and her PA Gabe, Gabe called me this morning and said we are still status quo. I had the bone marrow MRI and the osseous xrays and have a lesion in the skull one in the right leg and what they thought were some in my spine . I was set to have radiation and got tattooed and everything then found out before it started that they arent myeloma lesions in the spine but hemangiomas.
My bone marrow stuff last year was 11 1/2 percent so im not sure what it is now.
there is neoplasms in the blood but at this point not enough to be treated.
|
Chat Moderator
Administrator
|
Posted: Mon Apr 27th, 2009 07:02 pm |
|
Hi Destiny,
It's important to remember that while you may not feel up to chemo or a stem cell transplant, getting treatment is key to getting rid of the symptoms of multiple myeloma, like lytic lesions and a weakened immune system. Treatment is what will make you ultimately feel better.
Also, if you are very tired, there is a good chance you are anemic, which is another symptom of myeloma.
The key to good treatment is getting treatment on the front end that is effective so that you will stay in remission. It may be no fun, but it is worth it eventually so you can have a good quality of life.
You may want to look into Huntsman Cancer Institute's tandem transplant protocol. This treatment has had excellent survival rates of 10 years or more, so it can really pay off.
If you delay treatment, dangerous things could happen as a result of the myeloma. For example, you could go into renal failure or be hospitalized for a compression fracture. You have symptomatic myeloma, and that means it’s time for treatment. We want you to have the very best chance at fighting this cancer and at a good life! You are quite young.
All the best to you and good luck with everything.
Myeloma Chat Moderator
Huntsman Cancer Institute
Last edited on Mon Apr 27th, 2009 07:21 pm by Chat Moderator
|
dawg fan
Member
| Joined: | Sun Mar 29th, 2009 |
| Location: | |
| Posts: | 7 |
| Status: |
Offline
|
|
Posted: Tue Apr 28th, 2009 03:41 am |
|
Destiny,
We saw Dr Green. we had previously seen Dr. Anderson but he apparently moved to Texas. We were very pleased with Dr. Green and the way he explained things. It seems to me that you need better explanations/information. Do you have someone that goes to your appointments with you? Are you in Seattle or do you live outside the city?
I'm wondering if we should e-mail off line?
|
destiny
Member
| Joined: | Fri Apr 24th, 2009 |
| Location: | |
| Posts: | 13 |
| Status: |
Offline
|
|
Posted: Tue Apr 28th, 2009 04:42 pm |
|
i live outside the city, and my husband goes to all the appointments with me, also my mother in law comes down to help me when he goes away on his job.
my email is bfreitag7@msn.com
|
dawg fan
Member
| Joined: | Sun Mar 29th, 2009 |
| Location: | |
| Posts: | 7 |
| Status: |
Offline
|
|
Posted: Tue May 12th, 2009 02:53 am |
|
Hi Destiny, I e-mailed on May 1st and haven't recieved a reply. I hope I'm not lost in your spam. I hope things are going OK for you. The e-mail would have come from tammymerrill@fhshealth.org with subject line "chat from dawg fan."
Again, hope things are OK. Hope to talk to you soon.
|
Current time is 05:58 pm | |
|