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SIROD 'Doris' - How ya doing ? Please update us when possible ..

VickiSam's picture
VickiSam
Posts: 8609
Joined: Aug 2009

We are thinking about you .. Hoping things are better for you -

 

 

Vicki Sam

SIROD's picture
SIROD
Posts: 2204
Joined: Jun 2010

I have had lymphedema treatments for 3 weeks, arm wrapped to my fingers.  I went 5 days a week.  There was 3 more weeks but due to my chemo treatments, I opt out doing them.  I could not ask the organizations around here to give me rides for 15 days plus every Wednesday take me to chemo.  Last week, it took 3 drivers to take me to my treatment and then pick me up and drive me to the hospital where I waited 1 hour before treatment and at the end of treatments, another person picked me up.  It was a long day for me.

They showed me what to do and I do every day, pushing the lymph out, it should take about an hour but sometimes I am faster through especially the 2nd time around.  I have to learn to slow down.

Hoping the 3rd reduction of amount of chemotherapy would make a difference.  I am very fatigue again so the blood levels the rbc must be lower again.  I'm changing oncologist too.  It not anything my oncologist has done but she is an hour away and since I am now depending on rides from organizations, I decided it is easier if I do local.  My oncologist is ok with it and understands but after 13 years with her, I don't like to do it but I have no choice especially as we head into winter.   The oncologist at my local center is very nice and he was the person who help my oncologist when she moved into the area.  I have seen him at the chemo place but have not formally met him.

Thanks for asking VickiSam,

Doris

fauxma's picture
fauxma
Posts: 3556
Joined: Dec 2008

Doris,

that is a long day for sure.  I can see where you might want to consider having your oncologist closer but I relate to leaving your current one after 13 years.  I have been with my gyn oncologist for 13 years and sh is retiring next year.  I travel an hour and 1/2 to see her and she is my favorite of every doctor I have ever seen.  She never rushes and she was the one who did my gene testing for lynch syndrome, who ordered the IVP that found my bladder cancer, who found my first skin cancer.  She is so throrough in her exams, is always gentle, and well she is just one of the angels of medicine.  I have one more visit with her before she retires and then I will be looking for a replacement closer to home.  It is so hard when we have someone we trust to even think about changing but circumstances such as your long, long day can make that a necessity.  I hope you find someone who is wonderful and who you relate to.  Also hoping that the lymphodema eases up and that your fatigue resolves. 

I will keep you in my good thoughts.

Stef

SIROD's picture
SIROD
Posts: 2204
Joined: Jun 2010

Dear Stef,

I can understand why you like your old oncologist.  I do hope you find someone you like and trust just as well.  Though relationships take a long time to build.  I don't expect this new oncologist to take my old onco's place.  I just hope he has some ideas to help me out with my iron deficiency caused by the chemo.

What I would give to be back on hormonal therapy.  

Wishing you the best,

Doris

CypressCynthia's picture
CypressCynthia
Posts: 4017
Joined: Oct 2009

I am so sorry that you are going through this and I wished I lived closer so I could help!

Praying your new onc is one you like.  I have adjusted to mine, but it is hard to change after so long!

Sending gentle hugs and hope that you feel better soon!

SIROD's picture
SIROD
Posts: 2204
Joined: Jun 2010

I'm not gone but my MacBook Air that I have had for not quite 13 months died on me yesterday.  A Mac tech guy is looking at it to see if he can fix it.  If I need a hard drive, I might as well buy a new computer as it's about the same price.  I did order a Ipad, but rather have my MacBook Air back and functioning.  I'm using an old MacBook which is hard to type on, so this is why I am not posting much.

Had my 3rd treatment of Cycle #5, all wbc, rbc and etc are low out of range.  Might need iron again as that was all low out of range too.  My drivers so far have been nice people.  If I ever feel well again I would like to do that sort of thing.

Starting to have neuropathy in my feet. 

Doris

Josie21
Posts: 377
Joined: Nov 2012

I just want you to know that you are in my thoughts and prayers.  I too will be switching oncologists soon because it is getting difficult (and really expensive) to travel back and forth to NY every six months.  I feel a little frightened, but I know there are many great doctors out there.  I hope you feel secure with your new oncologist and he helps you get some energy back.  

Sending you many hugs,

Ginny

SIROD's picture
SIROD
Posts: 2204
Joined: Jun 2010

Thank you, Ginny, I am certain when I meet him in October I will like him.  Good luck to you with finding a new oncologist.

My energy is low and of course, I am worried about my mom who has Alzheimer's and had a major stroke in mid-July.  She is now 100% unable to do anything for herself.  She lives in an assisted living places and we hired aide to help her when the other aides and workers are busy.  In spite of it all, she fell out of her chair, her call button was on the wrong arm.  She luckly bruised her knees and a small spot on her head.

I am to far away to be any help to my sister who carries all the burden.  We talk every day, sometimes a lot like yesterday.   I do talk with my mother every day.  Sometimes she can have a lucid moment and other times she doesn't answer, it's almost like talking to yourself.

Anyway, I have the last chemo of cycle #5 this week with 2 weeks off.  I am beginning to have neuropathy in my feet and mouth sores.  What joy chemo is.  How I wish that I could take part of the trial in January of trying to reboot aromatase inhibitors with a drug called Entinostat.  It is going into Phase III.

Best to you,

Doris

 

fauxma's picture
fauxma
Posts: 3556
Joined: Dec 2008

I am so sorry about your mom.  It must be difficult to be at a distance but talking with your sister must give her some comfort.  I have no doubt that you would be there if you could and I can understand your worry.  I think it is great that you talk with your mom daily.  The lucid moments are good but mostly it is good for you to have that connection.  I was very close to my grandmother and helped my mom care for her until she became to frail and ill for us to do on our own.  I visited her nearly every day and most of the day she couldn't remember a visit from a hour before.  Mom would literally leave and we would pass in the hall.  When I would go in gram's room she would say she hadn't seen her in days.  She was such a darling and although it was a kindness when she passed it was still so hard.   I was also caregiver with my sister for our mom but that was a short time and she slipped away within a few weeks.  She was at home with those she loved.   Now I am looking after my Den.  He is doing pretty well and gets around with his cane or walker..  He is easy to look after, never complains and his mind is sharp.  He just needs help with bathing, and preparing pureed meals and help with the stairs outside.  but inside he gets around pretty well so I taking care of him is easy. 

I wish that you could have been in that trial also.  I think of you often and I think that you have faced your treatments with a straightforward attitude and that you are doing all you can to fight this horrible disease.   I hope that you click with your new oncologist in October. 

I know I told you about my gyn-onc in Sacramento but this past Monday I saw my oncologist here in town for my breast check up.  My appointments with here are more a in and out the door and she is very matter of fact.  Sometimes I have felt like it is so brief why bother.  This Monday though she asked how I was and mentioned some shortness of breath and back pain.  She had me do labs, scheduled a bone scan for that Wednesday and a Ct scan for last Friday.  She responded the same evening as the tests with emails that contained the reports and wrote that there was no evidence of a recurrence or mets with either test.  I wrote back that I was sorry that I wasted her time and she wrote back that it is never a waste of time to rule out recurrences or mets.   She wants me to follow up with my PCP as it could be a strain that wouldn't necessarily show on either and that the shortness of breath should be looked into with him.   I was surprised at the speed with which she ordered these tests so I have really changed my opinion of her level of care.  She obviously does what needs to be done when it need to be done.   Maybe I can let her take over the gyn-onc stuff as well.  Not sure how that works but it would be nice to have just one onc to visit.  I still see her every six months even though it has been five years since I was diagnosed.

 

Again, my kind thoughts are with you and with your mom as well.  

Stef

New Flower
Posts: 4197
Joined: Aug 2009

Doris and Ginny

you both can still see your old oncologist for consultation or when you feel you need an additional help. It is hard to commute for more than an hour for doctor's appointments for sure. 

Doris I hope you will gain some strenght while on Chemo break

Sorry for your mother situation, it is hard when parents are getting older and need more help which we cannot provide. I am the only child, and not healthy anymore, I understand.

I am having shingles again, second time in 4 months, as always a unique case, nobody never heard of (LOL).  

Hugs

Double Whammy's picture
Double Whammy
Posts: 2388
Joined: Jun 2010

I'm so sorry to read about the rough time you've been having both physically and emotionally.  Sometimes it seems that the mere logistics of having cancer can be as devastating as the disease itself.  I mean it when I'm saying that I'm sending prayers and hugs.  Tough times indeed.

Suzanne

Double Whammy's picture
Double Whammy
Posts: 2388
Joined: Jun 2010

I didn't know you have Lynch Syndrome.  This weekend when I was at the Ovarian Cancer walk, I met 2 women with Lynch syndrome.  One of the women was diagnosed with endometrial cancer the same tme as me and (small world) she had her hysterectomy the very same day as me.  She was the morning surgery- I was the afteroon.  Same surgeon, same robot.  She has since had colon cancer.  The other woman has had ovarian and I think breast.   I've never been tested and I doubt it's something I have as I have absolutely no family history of any cancers except my maternal grandfather.  I think you've had enough!

You mentioned you had a gyn onc in Sacramento.  This is my neck of the woods and my gyn onc is there also. 

Sending both you and Den my best,

Suzanne 

jojo2
Posts: 28
Joined: Apr 2013

Others on this site talk about using Metanx for neuropathy and having good results with improvement. I am asking for it 3 years out for my improved but still numb, tingly feet. Hope everything improves. jojo2

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