Can we have a forum for "older" people with bc?
Comments
-
UGH! I think I have a bladder infection. I've got an appointment with NP this afternoon about it, but tomorrow I should get oncotype test results (supposed to be in last Monday but weren't).
Can you take chemo with a bladder infection? What about encapsulated pneumonia? Gheez, I sound like such a mess. (And I was very active at local gym before all this).
After such quick responses in October and November from suspicion to diagnosis to surgeries, I have been in limbo since Nov 24 waiting for various tests results. Now I am so close to learning chemo? or straight to radiation? and I get a #}~>*\€!! bladder infection!
Give my a break! Is this what being 65 is all about?
0 -
Sandra- like everyone else, I am heartbroken for you. Prayer and hugs and tears for you.
But, ladies, if it is a blood donation that is needed, why don't we take an active part and spread the word. I don't know that any of us would be acceptable, having gone thru, and for some, still going thru BC, but we all have family, friends, FaceBook contacts, church families, golf buddies, etc, etc. When Sandra gets more specific info, why don't we all put out requests? We would keep names private, of course, but we could widen the search , and I believe more people are willing to be tested if they know it is for someone specific, even if they don't know the actual person. It's enough that someone they know knows the person.
Am I way off base here or is this something we could do? I know I would feel much better actually doing something than just talking about it.
Anne
0 -
Bethematch.org to register for bone marrow donation.
0 -
I think everyone should register. You're right that people would do it for someone they know or for a child, so why stop there. My closest blood relative is a half sister I've never met, so I would need the registry if I needed a match. There are lots of subtypes that have to match as well. Your local blood bank would probably be the place to start.
Sandra, Hugs to you both. I hope you can speedily find a good match. That's step one.
0 -
Sweethope, we're neighbors. I live between Madisonville and Covington on the north shore. Good luck to you in your treatment.
Sandra and Mike, you are in my thoughts today.
0 -
sandra i am speechless my heart aches for you both.
0 -
We can see in the puddle either
the mud or the reflection of
the blue sky, just as we choose.
Lucy Fitch Perkins0 -
I come to the group today with so much thanks for all of you. I wish I knew more about what's going to happen when, but until we meet with the transplant coordinator, we are just guessing. Today Mike had a blood transfusion and it was amazing to see his color improve and his energy come back before my eyes. Walking into the hospital this morning he had to stop and rest. His color was that yellow/gray that makes it obvious he is sick. They took his vitals and his blood pressure was 88/50. After getting just one unit of blood, it was up to 105/65 and he looked so much better. We walked out a lot faster than we walked in. He was hungry too, which is rare, so we stopped at our favorite restaurant. He only had a salad and some soup, but it was something.
Apparently the process to find a donor is complicated. It's not just the same blood type, but consists of many other factors that only lab tests can confirm. There is a national bone marrow donor registry but I have no info yet on how you get on the list. I do know that testing for a match can be done with a simple cheek swab but don't know if that's all you need to do to get on the registry. I was reading last night and while the donor does only have to give blood, he/she has to take a certain drug for 4-5 days prior to stimulate stem cell production and it's possible to have some temporary side effects like achy bones and headache. Not everyone would be willing to go that much for a stranger. As soon as I know more I'll let you know.
0 -
Well, I too sort of feel like someone punched me without reason. Sandra, I just seem a bit unable to comprehend but likely because I ( like you and every other person here ) just somehow had this idea that things were at a better spot starting out then they now seem to be. I guess it is true that you just never know what we will be called to endure. Just like all I want to tell you that you are not alone. We are here to share it all bad, or good, and just keep loving, hoping, and praying for the things that will turn this around in something better.
Lots of love, healing energies and a world of care for you and Mike.
Blessings and hugs,
Jackie
0 -
Sandra,
I have been off for a few days trying to clean a bit before my surgery.....as my energy allows.
I was shocked.....
I am so sorry for Mike's DX.....but feel hopeful for you both that a bone marrow transplant will quickly become available and I know that journey will be rough but Mike is a strong guy and will kick MDS in the A$$ when he gets some good marrow to grow in his body.
BTW I was on the national bone marrow registry since my 30 or 40's and I was called ONCE to be a donor in my 50's, I told my boss I was leaving for further testing and I would be back the next day, and let him know WHEN I would go to the hospital & donate....I went in for further testing and as well as someone else.....they found the other person would be a better matched donor......they only took marrow (at that time) from people UNDER 60 (don't know if that has changed)....so I am no longer eligible to donate.
Ya know when I hugged YOU and hugged Mike at the airport when you arrived in Seattle in August.......I am sending you both duplicate hugs again.....love ya both!
Di
0 -
Although it's been a very long time since I've posted I have closely followed this site. You ladies have such a talent for writing down the activities of your daily lives along with your thoughts and feelings........a talent I am sorely lacking, but I'll try.
Sandra, I am so sorry for the shocking news you and your husband received this week. It seems like no matter how we prepare ourselves to hear the worst it still crushes our hearts to hear it if/when it comes. However, I can tell by the tone of your posts you're projecting strength to your husband, even though I'm sure it's difficult for you, that he needs and appreciates. As others have said, don't neglect taking care of yourself. Remember it hasn't been that long since your last surgery. My hugs go out to you both.
Muffin, I have read your posts with great interest as you live in Fargo. My parents were born and raised in Barnesville, Mn. and I still have family living there. I also have a cousin who lives in Fargo. I spent many fun Christmas and summer vacations in your neck of the woods.
Judy
0 -
Sandra, You and Mike have been in my thoughts and prayers, and like everyone here, I kept checking the posts to hear about Mike's diagnosis with great concern. I am so very sorry that it wasn't what you had hoped. However, he's a lucky man in that he has you by his side. And by the way, hope you are doing well, after all you have been through with your reconstruction surgeries gone awry. At least there is a plan in place, and hopefully he will get word of a donor soon and come through that well. You know that you have all of your friends here in your corner, hoping and praying for the very best for both of you.Take care. (((((Hugs)))))
Paula
0 -
Sandra, You and Mike are in my thoughts and prayers. I am very sorry that it wasn't what you had hoped. It helps to have a plan in place, and hopefully he will get word of a donor soon. We are all here for you. I am praying for the very best for both of you. Please take care of yourself also.
Emmy
0 -
Sandra - sad denied for you and your family
0 -
Sandra, we're here for you and Mike in this journey the two of you have begun. Glad he feels stronger after the transfusion. It must have been good for him to be hungry and take some nourishment. Hugs.
We're in for freezing temperatures tonight but not quite as cold as last night. My mother has come down with the nasty sinus/head cold crud that has been making the rounds. Tomorrow I'm taking her to an appointment with her PCP's NP. I'm hoping she can get a med to help her. I was sick for 2 weeks. I hate to get her out in such cold weather.
Hi to everyone.
0 -
Since several have asked:
I've found a short YouTube video on how to become a bone marrow transplant donor and what the process is like. As Di said, the younger the donor the better and the cut off is 60. One of the websites for donor recruitment says 25-44 year olds are the age group preferred by physicians.
I've learned in my research this evening that the terminology "bone marrow transplant" is being replaced with "peripheral blood stem cell transplant." Although in some cases, the actual bone marrow is donated, by and large that has been replaced with the new process of stem cell donation, done completely through the blood.
https://www.youtube.com/watch?v=lv2LSVgNWjg
When you register, they do a cheek swab so there is nothing invasive. They study your sample and isolate all the different kinds of proteins, etc. The info goes into the National Marrow Donor Program registry
http://www.nlm.nih.gov/medlineplus/magazine/issues/summer11/articles/summer11pg17.html
or one of the other donor registries I see online when I Google it. I do not know if all the registries are connected in one database somewhere.
0 -
Sure hate to get my mother out today. It's gray and very cold out. But I think she should see the NP because of her age, 92. She'll have to bundle up.
Our high today a little higher, 40's rather than 30's.
Hugs for Sandra and Mike and Blondie and all of us concerned about members of our "family."
0 -
We all have our thorns. We, and Life, have our moments.
Life occurs before our morning coffee.
Life occurs in our bathrobe with our hair uncombed.
Bless and give thanks for All of Life - the bloom and the thorns.
- Jonathan Lockwood Huie0 -
Waving a really cold hi from home here. I managed out of doors a bit better this a.m. The wind was not up much out here in the woods, so it didn't feel so uncharitable out of doors as it has been the past couple of days. No picnic but better.
Carole, it is a shame that your Mom needs to be out, but bundled up and hopefully getting something to help ease her sinus issues should take the sting away. I complain but really, I don't have any great reason other than not liking it. I feel for the older men and women who usually walk slower and in general seem to have problems with their inner thermostats even before they are out and about.
Sandra, though I'd have liked to "stumble" on your latest info just because, I do find it amazing that the BM procedures have become more sophisticated and hopefully this will make it far, far easier to get a good match and outcome.
Hi to everyone else. I'll be back later today.
Blessings
Jackie
0 -
Oh Sandra, I am so sorry to hear about Mike's diagnosis. It is good that he is in otherwise good health as that will be a big boost for him. Hugs to both of you as you sort out all the info and search for the right donor. I will keep both of you in my thoughts and prayers.
0 -
The visit to the doctor's office went well. No wait. Funny, though, that several of the staff seemed to be sick with the same crud. The NP gave us helpful info on choosing oc meds for my mother.
Afterwards we picked up roast beef Po boys at our favorite sandwich place. We both enjoyed our lunch. Dh made my mother a beef veggie soup this morning so she will have something nutritious to warm up.
Today has been an ugly day. Gray, cold, windy, and then rainy this afternoon.
Hi to everyone. Hope you all are staying warm.
0 -
Carole, yep, I'm right down the road. Don't you love the south? We have our cold snaps, but they are just snaps, not whole cold winters. Hope your mom does well. I can almost smell that soup.
I entered a clinical trial today. My oncotype score is 18 (12% chance of recurrence) and I was a perfect candidate, so I am leaving it up to a randomized computer draw as to whether I have chemo. I sign consent forms on Tuesday, then meet with my onc to either start chemo or just radiation and hormone therapy. (I was delighted while reading the consent form that they want me to remain in the study at least 15 years. I like that optimism...I haven't heard that lately.)
0 -
I made Pasta e Fagioli and a salad for my PS and his staff today because I am finished with the reconstruction marathon!!!They appreciated it because it's brrrr cold here. I must say that I LOVE the seat warmers in my car and wish my furniture had them, too.
0 -
We had a sunny day here today. Went running about with my friend who no longer drives. We went and neatened up her disabled son's apt. Not really hard as he is pretty good with most of it. Out to lunch and it was a place with some "machines". I ended up with $8.00 winnings from the penny machine. She was on a different on and ended up with $27.00. Not bad for two old ladies.
Glad that it wasn't gray but it was cold and windy. Will be that way tonight and some tomorrow as well. It will change over the week-end and I think Sunday and Monday will be bad. Sleet and snow are predicted for now though it is early yet and I've learned to take a wait and see attitude with the pretty un-predictable weather. Anyway, didn't do any of my work today -- just ran my friend around which I sure didn't mind.
Glad your Mom has food and likely meds that will keep her hopefully comfy while she gets well Carole. I had sinus for years. It is no fun at all. Still get some but it is not the flu-type now. Just stuffed up nose, then lots of drainage -- then stopped up, then draining. As long as it keeps moving it is more a nuisance in my case. Since I came back home it has done that so I feel fortunate.
Off to work.....see you all tomorrow.
Jackie
0 -
0 -
Sandra i hate when they tell u those things time periods means nothing. Baby steps n 1 at a time. we r hear 4 u. Thoughts n prayers.
Hi everybody
0 -
MBean -- you might know, huh !!!!! Got there here too. Not too much fun. I guess I won't be going to Mars anytime soon, but interesting that if I ever go and its wintertime here, I'll vacation where it is warmer. Wow !!!!!
Jackie
0 -
Carole, you reminded me of Red Robin's French Onion Soup! I love it....! But I found a box of frozen "packs" of French Onion Soup at Costco! I thought, "Now THIS can't be THAT good"...! But it was pretty tasty! It has little "balls" of cheese and croutons frozen in it.... and I toasted fresh croutons for the top, and added more cheese, heated it up until it was H-O-T and it was really good.
I saw this guy grab a box of these, so I thought "Well if HE thinks they are good, they must be".....
0 -
The book of life is filled with incoherent riddles.
Life's true lessons are inscribed in a corner of the margin.
- Jonathan Lockwood Huie0 -
Brrr, it is as I heard for many, many years, colder than a witches' tit outside. The sun was shining when I got up this morning but that is truly deceptive -- and I found that out the minute I stepped outside. I think it will warm thru the day. Not nearly as much as I like, but it can't stay like this. Can it????
Chevy, that soup looks so good. I have based my decision of whether or not to buy something on just the same thing you have. Funny about how we do some things. When I go to a restaurant ( even if someone tells me how good something is ) I almost always buy something I've already had and know I love. I have been 'duped' a little by waiters or waitresses who think because something is chosen a lot it must be really good, or they have tried it themselves -- and way too often I am not thrilled -- maybe ok, but not truly highly satisfied with the choice. Do we really have to DISCOVER it on our own? I'm not sure, but while I also tend to be more inclined to stick with what I know in the grocery stores, on occasion I will see someone 'pick' something I've looked at and have the same impression. It must be ok if they are taking it.
At least at home, we can 'doctor' it up a little bit, but food in a restaurant is pretty much what you see is what you get. My tastes have changed through the years and oddly enough, after chemo ( been a while since those days ) I really found a great fondness for fresh vegetables that I never really had before. Raw veggies were suddenly fairly tasty without some of the "dressings" that were required before. I think in that case -- so many 'taste' cells went down the tubes and once renewed they worked well and flavors were great -- even the things that had seemed a bit on the highly bland side -- like cauliflower. Celery became rather sweet and more desirable. I do think our "tastes" change about every 7 yrs. I don't recall but I think somewhere along the 'chemo' way I was told that my destroyed cells would take about 7 yrs. to fully come back -- so maybe that is what gave me my ability to have a more 'inspired' taste for things.
Anyhow, I will be running around a bit, but back later on. Hope you are all having an un-gray, bright and pretty sunny Saturday. Hi to all. Thinking of you Sandra.
Blessings,
Jackie
0
