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Survivorship - some progress and setbacks

truckingalong
Posts: 444
Joined: Aug 2010

Hi, Dear Everybody,

Since treatment of HL last February, hubby and I decided to take a big trip flying across US to New Mexico for 1 week vacation (two weeks ago). Before taking off, I was concerned because I had headaches often so I went to opthmaologist and found out that my eyes are very dry so took eye drops regularly and my headaches are mostly gone, thank god. Getting on the flight, I was struck with stomach problems and had to run to the bathroom numerous times but hubby convinced me to keep going. After arrival, I recovered mostly and was able to enjoy the deep blue sky and the beauty of Santa Fe clay dwellings all around. On the third day, I decided to go to the homeopathic pharmacy and was advised to drink Pro-Biotic for two days then I got better which was a godsend. It was suspected I had stomach virus.

Back home, few days ago, I started to get dizzy and felt rush through my arms and head. It was scary. To make my story short, my dr decided to give me antibiotics. Feeling better today. But what is going on? My body does not feel the same anymore. Does this ring the same with you, survivors? I get scared again. Anxiety attacks come on easily now. What helps me to keep positive is to keep busy with work and talking to hubby.

I like watching the Baby Dance - thanks, Jim!

Liz

jimwins's picture
jimwins
Posts: 2111
Joined: Aug 2011

Sorry you are having these problems.
The three things you discuss (eyes/headache, possible stomach virus, and the dizzines)
based on how you describe them are probably not related in my
non professional opinion. If the dizziness/rush return, I'd definitely see
the doctor. Are you on any new medications or herbals, etc. that might be
causing this? Is your blood pressure normal?

I recently finished chemo so I'm still recovering. Currently I'm mostly
dealing with fatigue and chemo brain/fog. I've also noticed my coordination
and reflexes seem to be a little off. I normally have good eye to hand coordination
but recently I've dropped things or bumped things like putting dishes away,
I've bumped the bottom of the cabinet with a plate, etc. Sense of balance is
also a little bit off too. Standing on one leg when drying off out of the shower
seems more difficult than before. Hopefully this is temporary and it's not
causing strong issues at this time. Also, it doesn't happen all the time.
I do take ambien as needed for sleep and I take ativan each night before I
go to bed for anxiety. They could be part of it.

I see in your profile you are deaf. Were you born deaf? Many years ago
I was involved with the deaf community in Houston. I learned sign language
and deaf culture and was involved for about 2 years. I learned alot but
unfortunately have forgotten alot as I don't use it any more :). I remember
the headaches I used to get trying to understand my friends signing at their
speed early on while I was learning :). My guess is you were not born deaf
as you write english very well :).

Anyway, I do hope you feel better and if the dizzy spells return, definitely
see a doctor about it.

Hugs,

Jim

miss maggie
Posts: 929
Joined: Mar 2010

Hello Liz,

I haven't posted on this site for so many months. Yet, everyday I read all
your posts, and say a prayer for all before signing off. I can't tell you why
I haven't been in touch??

About a month ago, I was sitting on my couch reading the Sunday papers. All of a
sudden I became so dizzy for 5 minutes, then I broke out in a cold sweat. I was so
frightened. Should I call my daughter, friends, my doctor, or 911?? Instead I called everyone
asking them to call me that evening. I feared I would die in my recliner. Anyway, I went to
my doctor the next day for an EKG. I also had an echo cardiogram. Everything was fine. I
suffer from low blood sugar. Maybe that was the cause, I don't know??? I too have been
getting headaches. Not everyday, but more than usual. Maybe dehydration, not drinking
enough water, stress, anxiety, I don't know. I don't feel the same, mentally that is.

I had a colonoscopy last year, june 2010. Everything was fine. Last week, Nov 3 I had my
second colonoscopy at the hospital. The doctor removed a 7 mm sessile polyp from my
sigmoid colon. Now waiting for the results from the biopsy. I also had an abdominal ultra
sound oct 11. The girls from my doctor's office mailed me the results after my doctor went
over the results. They always mail me the results after. Everything was unremarkable, but.
"There is prominence of the pancreatic duct which measures up to 2 mm in diameter." "If clinically
indicated this may be further evaluated with a CT with contrast." I am worried. My husband
died from pancreatic cancer. My doctor is usually an alarmest. Why is he not worried???
I sent him an email yesterday. I am waiting for a response. I am due for my pet ct scan. I
want it now. Perhaps an endioscopy also???

Yes, Liz I am where you are. I just hope you're feeling better. If your stomach still bothers
you, ask you doctor for an abdominal ultrasound. Also an EKG, and echo cardiogram. Better
safe than sorry. Very interesting you mentioning dry eyes maybe be the cause of the headaches.
I have an appointment with the eye doctor in Jan 2012.

Liz, as if wrote in this email I am so frightened also. I am becoming a hypercondriac.
Everything is becoming so overwelming for me. I panic when I have too much to do. What
a mess.

Forgive me for not keeping in touch with all of you. Never, never forgotten.

Love Maggie

cathyp's picture
cathyp
Posts: 373
Joined: Dec 2009

I too had an ultrasound of the abdomen in 2008 that mentioned a protrusion at the head of the pancreas. This snow balled into a ct scan and labs for pancreatic cancer. Everything came up negative. This story repeated itself after another US this year. This time to avoid more RADS, I had an MRI. All is ok. As you know, the worst part is waiting for additional testing. It's a nightmare but try not to worry, I know easier saif than done. Hopefully this is your anatomy and all will be well. Unfortunately, when we go through all these tests, we are reminded that the results are never in black and white. Always shades of grey.

Cathy
HL 1989, 1994
IDC 2007

miss maggie
Posts: 929
Joined: Mar 2010

Dear Cathy,

What a great idea, MRI that is. I am not scheduled to see my oncologist until feb 2012.
Of course, if something comes up, I can always make an appointment. I am sure I can get my
internist to order a MRI instead of a Pet ct scan. Yes, too much radiation, I agree.

I am glad everything turned out ok with your scans. My husband wasn't feeling well (stomach) for
almost a year. All his tests came out negative until a year later. He was then DX with pancreatic cancer. You and I have to keep on top of things when we have stomach issues.

Maggie

NHL, stage 1, low grade, B cell dx sept 2009 - sub type extranodal marginal zone b cell lymphoma remission jan 2011. Rituxan only in dec 2009.

onlytoday's picture
onlytoday
Posts: 603
Joined: Jun 2010

Hi All!

This feels like a reunion! LOL

I think about all of you every day.

I'm also suffering with residual stuff from treatment, which was Rituxan last year. I get infections very easily and have alot of trouble with degenerative disc disease.

This journey we are on is HARD. We just have to be aware of our bodies and get to the doctor when in doubt. I always get a second opinion with anything my onc says too.

Love and prayers to all.

Donna

MZ NHL Stage IV May 2010, Rituximab 09/10. WW

COBRA666's picture
COBRA666
Posts: 2413
Joined: May 2010

Donna,
How have you been? Long time no hear. Yes it does feel like a reunion. Just need a couple of more people and then the old gangs all here.LOL John

allmost60's picture
allmost60
Posts: 3184
Joined: Jul 2010

Hi there,
I've been wondering how you have been. How did your daughters wedding go? Good I hope. I'm doing the Rituxan maint right now, and so far I haven't gotten sick or had any infections..(knock on wood). Did you feel more tired than usual while doing your Rituxan? I'm just not getting my full energy back and it's been almost 1 year since my chemo. You are so right..this cancer journey IS hard. It's good to hear from you Donna..I've missed the old gang. Take care and come back more often. Much love...Sue (FNHL-2-3A-6/10)

onlytoday's picture
onlytoday
Posts: 603
Joined: Jun 2010

Sue,

Yes, the Rituxan made me tired too. It stays in your system awhile too. I was having hair thinning ( it never clumped) up until last month!! One year later! Luckily I have ALOT of hair and only my hairdresser knew. But the front of my hairline is different- receeded hairline . Of course my onc said that there are no statistics saying that your hair thins from it. But it was definately the R. For me anyway and I had 4 infusions over 6 weeks. At the end I had an allergic reaction to it so I can't have it anymore. Too bad because it's an amazing antibody.

I know that they say it's a great drug for maintainence! Lots of success with it.

The wedding was GREAT! Perfect weather, fabulous food, music, guests, and of course the bride was gorgeous and she and her husband (still sounds funny) were and are happy! Can't ask for more than that! I got to dance at her wedding- that's all I wanted this year! Thank God!

Your grandbaby is so precious! Must be so much fun! My niece just had a son and my sister in law said you can't describe what it's like to have a grandchild. It's different and fabulous. :)

Love ya,
Donna

miss maggie
Posts: 929
Joined: Mar 2010

I forgot to mention. When I had my colonoscopy in June 2010 at a GI center, they gave me
sedation Profofall. There was an anestesologist in the room. Last week when
I had my colonoscopy nov 3 in the hospital, there was no anestesologist.
Therefore, I was given Fentanyl and Versed. The reason I am mentioning this,
if i ever have to have another bone marrow biopsy, I will insist on this sedation.
Don't ever allow a doctor to tell you you can't have this sedation. They do not
need an anestesologist to give Fentanyl and Versed.

Maggie

COBRA666's picture
COBRA666
Posts: 2413
Joined: May 2010

Maggie:Got the same meds for my colonoscopy. The first one I did have the Michael Jackson drug though.
Liz:The only problem I have after chemo is extremely dry eyes. They feel tired all the time. I do not know if others have this problem or not.I do use drops that help some. Sorry you are having all these problems. John

miss maggie
Posts: 929
Joined: Mar 2010

Hello from me,

Yes, I agree, this is some sort of reunion. Hello everyone. I think
you know I am still with all of you.

Love Maggie

bluerose's picture
bluerose
Posts: 1112
Joined: Jul 2009

I had NHL so am not familiar with the treatment regime for HL especially treatment today as I had my treatments 25 years ago.

The head and arm rushes for me were a sign of atrial fibrulation (irregular heartbeat) but it took them forever to catch it in testing. I also had high blood pressure and I'm sure they were connected in some way. Do you ever find that your heart skips a beat now and then? Report that to your doctor, keep a diary of the occurances if you have the irregular beats - that will tell the cardiologist alot. Have you seen an actual cardiologist at this point or just a GP or Oncologist? I would get checked out by a cardiologist. What kinds of chemo did you have? Some can produce heart issues later - start off subtle. This may not be your case at all I am just sharing what happened with me and the rushes to the head especially freaked me out. In my case they got worse as my heart got worse - near fainting.

As far as anxiety and panic attacks are concerned many survivors experience this and it can go as far as to produce Post Traumatic Stress Disorder is my non professional take on it. I have seen a trauma counsellor for trauma scenes from cancer treatments and other traumas I have had and there are a few signs to watch out for. Do you relive certain scenes that were troubling in your life - flashbacks? Do you scare easily - like jump when there is an unexpected sound or someone approaches you that you didn't see? I mean we all do that to some extent but do you jump easily and often? It's called a startle response. Do you avoid certain situations surrounding say your treatments like certain areas of the hospital etc? All these are normal to some extent but if any of them are persistant or are interring with your daily life then you might need to see someone about PTSD. They didn't think, years ago that cancer patients got PTSD, but now studies are being done on it all over.

I think in general you might do well to seek out a good grief counsellor or one who deals with cancer survivors as a speciality. We grieve the loss of our health through the cancer journey and many of us develope late effects from treatments, others don't seem to so hopefully you are one of those. It depends on lots of things like how long ago a person was treated, what drugs or how much radiation did they receive, type of cancer and stage, blah blah blah so best check in with the docs/specialists just to be sure.

In the States there are late effects clinics, one I know of is at Dana Farber in Boston at the Perini Clinic. If you contact them, a nurse practioner there perhaps, they might guide you in how to be seen for possible late effects of treatments. That's what they do there and it can be quite validating and helpful.

Do let us know how you are doing. Keeping busy is always good but you don't want to let something go that should be taken care of sooner rather than later too, like those rushes to your head and arms.

All the best,

Bluerose

JoanieP's picture
JoanieP
Posts: 573
Joined: Mar 2010

Hi Bluerose, Donna, and Miss maggie
Good to see you all post. Sue are you taking glucosomine? My onc told me it would help after rituxin as I was achy also. I take 1500 mg a day. It helps. My love and good wished to all of you. My son , his wife and my only two grandchildren are moving to San Fran on Sunday. We live near Tampa Florida. Could they move any further:)? I will miss them so much but God has a plan. I will be driving, flying and skyping:) Have a good week. I certainly agree that I never know whether a pain, etc is something to be concerned about or it my age. Joanie

allmost60's picture
allmost60
Posts: 3184
Joined: Jul 2010

Hi Liz and Maggie,
It was so nice to see posts from both of you! I miss not hearing from you! I too feel like I am not my old self and it seems like every other day I question something about myself that just doesn't feel right. For instance...(cute story) I get a sore throat, every other day during the week, which was really starting to worry me. It's been happening since last August so I was starting to wonder if my cancer had come back and was now in my throat. The strange part is, it doesn't happen on the weekends or on Tuesdays and Fridays. Well...Steve(hubby) figured out what is causing it...are you ready for this?..LIZZY! Yep...Steve knowticed on my days off from babysitting I wouldn't get a sore throat. He said while Lizzy is here on Mondays, Wednesdays and Thursdays all I do is talk, read and sing to her. haha! I'm so glad he figured that one out and saved me from panicking and asking my doctor to check my throat for cancer. I do however have other little problems...headaches, fatigue and achey joints that just don't seem to be getting better. I'm more inclined to think "getting older" has more to do with feeling this way than having cancer. Chemo probably ties in there also, but getting older surely isn't helping matters. Anyways.. I figure as long as I can keep watching Lizzy,keep up with my housework and cooking and still feel fairly good come evening.. I'm just going to count my blessings and not let the the fear of "new" cancer get me running scared. I think we will always wonder and worry that the cancer is back when our bodies don't feel right. The trick will be to sort out the real fears from the not so real. Hard to do all of the time. Anyways..glad to hear from you sweet ladies and hope you will come back and post more often. Much love...Sue (FNHL-2-3A-6/10)

truckingalong
Posts: 444
Joined: Aug 2010

Wow, it is real nice to see all of your posts with helpful insights and tips and to update our situations. Thanks to you all.

I realize about not being in touch as often as I would like - for me it is all about coping - review and reflect here then take breaks to "surf" on my own then come back. So I always will check in - don't worry! Maggie, I hope your situation improves. I am feeling better today - no stomachaches or vertigo but there is always something else - maybe it s my age too... I just hope I stay in control knowing that I won't fall apart or faint!! One thing is clear - I am learning that I cannot take shortcuts - like getting short sleep then I have to pay the price for it. So I have to get enough sleep to be sure I am in good shape at work.... Bluerose, you have good points - I recognize PTSD symptoms and that is something for me watch for - if worse, I will go back to my old therapist and/or change medication. And will report to my dr and ask for certain tests.

As for dry eyes, John, I remember you recommend a certain brand for eye drops - what is it? I have two kinds by Optive - one with preservative which lasts longer and the other without preservative - it lasts shorter than the one with preservative. So you keep using them several times a day? More work on our bodies!

Yeah, Jim, I have balance issues too from time to time. At the gym I use the balance platform to help me practice balancing. About reading sign language, you get tensed up trying to understand and watching it - the same with me when I try to lipread and it does strain my eyes! So that is why I use ASL (American Sign Language) which is easy on my dear eyes. Thanks for the compliment about my English skills - actually, I was born deaf - stone deaf! I was lucky to have dedicated parents to expose me to signing and lipreading at an early age and then I used tutors to help me with my English skills - looks like my hard work paid off. :) Yes, I love my work as a clinical social worker - listening to clients who experience stress can be draining but rewarding for me to see positive growth in them.

Right, Sue - have to figure out what is real and not real. There is so much for me to cope with so I take one thing a time I guess. So I am thinking... Humpty Dumpty had a great fall and those shell pieces are being put back together one by one... grins

Love,
Liz

jimwins's picture
jimwins
Posts: 2111
Joined: Aug 2011

Well, let's hope you get put together before someone
decides to make an omelet :). Just kidding you know.

Hang in there!

Hugs and smiles,

Jim

truckingalong
Posts: 444
Joined: Aug 2010

Ha, thanks, Jim! Humor surely helps me get through heavy stuff.

Hugs,
Liz

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