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Don't assume Drs will figure out for you (but how would I know?)

truckingalong
Posts: 444
Joined: Aug 2010

Hi, Folks,

I just learned from my physical therapist that I have lost most of muscle tone in my body after just completing 12 chemo treatments so my PT is sending me an order for swimming and pilates training to build up my muscles and strength. Wow - I feel overwhlemed to start all over but I look forward to gain back this stuff. Anyone go through like this? How long would that take to get back to normal?

Anyway, in looking back, I realize that in the beginning of treatments, I got severe headaches (almost like migrianes) and my onc said it had nothing to do with chemo or related meds. and sent me to neurologist who prescribed me Topomax which helped only about 50% of the time - nobody figured out why I had those headaches until four weeks ago I happened to look at one of the bottles for side effects "MAY CAUSE HEADACHES".... Bingo!! It was one of the anti-nausea meds, Kytril (generic - Granistron sp?) so I stopped taking it and felt a lot better. Oh man, I wish drs would figure this out from the beginning - I wasted away my muscle not moving much for 5 months because of those headaches!! Oh well, it was better than never! I am so glad most of my headaches are gone. Now I only get slight headache if I don't drink enough water or feeling fatigued. I learned from this experience that - DON'T assume that drs. or oncologist would figure out answer for you or for me. But it was not easy because I was on 10 different meds including OTC during my first few chemo treatments and you can imagine how sick, zonked out and overwhelmed I was and had no idea that one of these had a bad side effect on me. Oh well, I am just venting out my disappointment but am going to move on. I sure am glad all this is behind me, ha! But it sure as hell scared the wits out of me when not being in control, ya know? I will return to work in five weeks so I am counting on gaining strength in this short amount of time... oh by the way, per neurologist's suggestion, I have started to slowly wean away from Topomax from last week. No problem so far. Yeah!!

Thanks for listening and caring,
Liz

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

Hi Liz,
I've also lost muscle tone and body strength since chemo treatments. Just recently I have started doing daily strength building exercises here at home. Mostly upper body...arms. My legs seem to be ok because I'm not one to sit for any length of time and I keep pretty busy with walking up and down the stairs here at home and short distance walking here in our neighborhood. Our home sits on a hill, so I walk up to the end of the road and then back down 4 to 5 times a week. It's a steady up-hill climb to the top of our road and I can feel a good burn in my calves and thighs by the time I finish. I just started doing this 3 weeks ago and I do feel better afterwards and have knowticed improvement in my endurance. I'm going to step it up a knotch when it gets warmer, which will hopefully happen in mid March. Good luck to you and I'll keep good positive thoughts that your efforts will bring the results your looking for. Hang in there friend..our bodies have really been through the mill and back, so go slow and steady. Love...Sue (FNHL-2-3A-6/10)

truckingalong
Posts: 444
Joined: Aug 2010

Hi, Sue,

Good to hear from you, thanks for the positive thoughts. I have not been confident to walk by myself because of anxiety attacks with heart racing or getting dizzy. So when hubby is home we walk together but we live on flat land. Week by week, I get less dizzy so that is good. My arms are getting in shape because of cleaning around the house but my legs need work. I will have the exercise bike taken out under the junk in the garage this weekend and start to use it. Sounds like you are building up strength with comfort so that is good.

On another topic, since my hair is starting to grow back with 3/4 inch so far, I start to think how I will look when I return to work in 5 weeks. Yikes! I've been wearing scarves. Will have to wear a wig (it is brown). I have no eyebrows and well, I used to dye my hair normal brown but now it is growing some brown, grey, and white. I think I am going to leave it natural but would use light make up.. In the past, I looked like a ghost in the pics with lots of white/grey hair - now, maybe I will look better with make up but being the former 70's hippie I never use it!! Next month my girlfriend and I plan to go to the dept. store for make up staff to teach me how to use make up. Hope I won't feel like I am wearing a costume, ha.

Today, my onc told me my PET scan is clean so I am in FULL remission. Yayy!!

Hugs,
Liz

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

Oh Liz...I am so happy for you!!! Full remission is absolutely wonderful news! You really had a rough time throughout your treatments, so I'm thrilled your reward is this good news!! About the hair and makeup. I've learned over the years that "less" is best. I hope the makeup gals will tell you the same instead of trying to sell you a ton of product that just isn't necessary. Keep it easy breezy! I'm keeping my hair it's natural color from now on...decided NO more hair dyes or high-lights...I've had enough contact with chemicals to last me a lifetime..ha! You will look beautiful no matter what you decide to do Liz. Cancer is ugly..."WE" are beautiful! Take care and build your body back up slowly. I have good days and bad days, but it is what it is. Dang right foot seems to have some neuropathy going on which is irritating as all get out. Talk to you soon...
Love...Sue (FNHL-2-3A-6/10)

miss maggie
Posts: 929
Joined: Mar 2010

Hi Liz,

Congratulations on your full remission. You certainly earned it.

I am so impressed with all the exercise you are doing. I know it's not easy gettting started. Especially after being dormant for so long.

I wish I were as brave as you letting my hair go natural. For me, my hair would be a mix of light brown and gray. So many people look beautiful with their gray hair. For now, I will keep my hair a butter blond. I wear little foundation. and just enough color on my lips. I do emphasize my eyes and love the look of blush. I think too much makeup makes a woman look older.

Be happy and enjoy the wonderful news.

Love Maggie DX 09/09 extranodal marginal zone B cell NHL remission Jan 2011

KC13167's picture
KC13167
Posts: 215
Joined: Jun 2010

Liz,

I completed r-chop Oct '10. I thought that I was going to keep my hair natural and forgo the color and highlights; well I was wrong. My hair is a medium brown, fine and thin. WOWIE, did I get gray over 6 cycles of r-chop! My gray doesn't look good with the color of brown hair that God gave me. I had my second color and highlight this week. How I treasured the free-ness of wee-short/bald hair. It's not only the time but the expense. I forgot how much money all the product costs! Keep in mind that for 6 months I used only 1/2 of a bottle of shampoo! Now it's shampoo, conditioner, volume spritzer, hair wax, spray and UV protectant. This is way too high maintenance for me. Just want my chin length bob back! I may just be overwhelmed by the price because I've never purchased all of the hair stuff at once before now.

I hear you about the makeup. I too look like a ghost without some base, blush and mascara on. Now I look best in more earth tones, peach, brown and creams.

If nothing else, this part of recovery has offered me the opportunity to sort through my personal "health and beauty" supplies and throw stuff out. Let us know what you decide to do with your hair.....it does grow back quicker than I thought it would! Kellie

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

I am a 23 year survivor of NHL, considered cured but left with tons of side effects and late effects but remember I was treated some 20 plus years ago so hopefully much has changed in these outcomes in regards to side effects.

Your message of not leaving it all up to the docs to figure it all out is sooooooooo true. We have to be strong, even when we are the weakest, and stand out ground when it comes to knowing our own bodies and passing along symptoms to our docs. I have a ton of specialists even yet, but that's just me, you will probably fair alot better I'm sure - we are all different in how we come out of all of this for tons of reasons, but even know some of those specialists and even their office staff have oftentimes given me alot of grief from trying to help myself. I still don't think that the medical community is in sinc with the side effects/late effects from certain treatments and this has to change. We have enough to think about with our daily physical struggles than to have to face invalidation and that shrug of the shoulder 'don't know' answer to what is ailing us.

I am glad to hear that you are trying to help yourself through physical activity and trying to improve muscle strength, mine is pretty bad too.

You mentioned something about your heart and being dizzy? Don't know your complete history but wonder if you have seen cardiology for any possible issues with heart damage from any of your chemo drugs or radiation? Just a thought and again I have no idea what treatments you went through. I had heart issues from adriamycin but I think they regulate that drug more carefully these days.

It's taking awhile for docs to realize that we sometimes don't present the same way with symptoms that patients who havent been treated present and that indeed some of our issues are in fact due to treatments. I don't know why they don't consider that fact, pretty major things have been done to our bodies you would think that would be top of the 'reason' list.

So keep fighting, keep strong and know that you are not alone in your struggle for understanding and validation. We are getting there though, on the positive side. These days there are far more validating studies done that point to treatment side effects and thanks to social media we survivors can come together, on sites like this one and others, and have our say as to what is going on with us and soon it becomes apparent that it's not just us who are dealing with these and other issues.

Much happiness and improved health in the near future.

Bluerose

truckingalong
Posts: 444
Joined: Aug 2010

Wow, time surely flew and here I am catching up with reading the posts - so much going on...

Thanks - I am amazed I am in remission, yet, I am cautious and find myself asking, "will it come back?" which I know is normal anxiety. I just have to get used to my new identity to be way I am now - a survivor.

It is interesting to read various experiences (Sue's and Kellie's) related to caring for your hair. Now my hair is growing more on the top but not on the sides - so it will be a while before there is any style except it can look like I am ready for Indian Pow Wow dance with my hair standing up!

Bluerose, I appreciate very much you sharing your wisdom as you had years of being a survivor. Yes, getting validation of what we went through is so important and helpful in our healing. I realize I need to stand on my feet and be my own guide more. As for my condition, I had Hodgkins and just had 12 chemo treatments of ABVD including Adriamycin (except Bleomycin for 10 times due to my decreasing lung function). Tests showed my heart function is fine. But I notice that when I get bloated with gas and need to burp but have not yet and feel the pressure, my heart would beat wildly and out of control so when I realize that I quickly burp to let the air out so there would be less pressure on my heart. Don't know what this means and my onc suggested I have this checked out with cardiologist but I already had this checked out... this has been going on for a number of years so it is not new... but because of my recent treatments, I get little more gassy so I have to watch out and also watch the way I eat as well. Hope you are feeling well.

Thanks for sharing - with positive thoughts,
Liz

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

I don't know if you mean you have a kind of acid reflux from time to time or if it's just a gassy condition but I read somewhere about reflux and heart issues possibly having some connection but it's just a faint memory of that. In any event I think it's a very good idea to have yourself thoroughly checked out by a good cardiologist. I noticed you had adriamycin and that drug can be notorious for causing heart issues later on. Now having said that of course it depends on doses perhaps and all kinds of other factors from person to person but I experienced issues with adriamycin and when I see someone has had it and are having any kind of heart issues I suggest they get a thorough heart checkup with a cardiologist - better safer than sorry. I know you said your cardiac function was good last time it was checked but these side effects can occur later on so if you are still experiencing this ehart action after you have a gassy feeling it means whatever is going on isn't resolving so why not check things out.

Let us know how you are doing. Keep truckin. lol

Blessings,

Bluerose

truckingalong
Posts: 444
Joined: Aug 2010

Thanks for the helpful comments - it is probably related to acid reflux but it is not that bad. That is why I called it "gassy" because it goes away in a short while and my throat is fine. But you are so right - I should report that to a cardiologist. My primary doctor's brother is one that practices in his office so that is convenient for me to have this checked out.

Yeah, I'll keep on truckin!

With peace,
Liz

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

Let us know what the cardiologist says or if there are new developements, okay?

All the best.

Blueroses

Michele23
Posts: 168
Joined: Mar 2011

Hello to all,Have been reading through the posts and wanted to share.Though I had Chop 16 years ago I've developed heart rhythm problems.I passed this problem off over a couple years until I spoke up.My cardiologist feels the Atrial Fib was brought on from the treatments whether it was the Chop or the 10/Rituxan we are not quite sure.Just be aware these drugs may cause heart related issues,maybe not for all but it has happened to me. Take care,Michele

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

I had CHOP too 23 years ago, did your protocol include Adriamycin? They now call my afib 'adriamycin induced cardiomyopathy' - long name for it damaged my heart Mine got quite bad about 10 years ago and I had many near fainting episodes, was in ambulances many times because of the severe afib and finally a super bad episode that ended in an emergency pacemaker being implanted. That helped but I have to be on lots of heart meds too to keep it all balanced.

While I was in bone marrow transplant isolation on the only recurrance I had I did have congestive heart failure before the afib showed up too strongly but noticable skipped beats first started only one treaatment in CHOP, first diagnosis.

People vary with when the arythymia starts with this kind of protocol I find but sooner or later I think many develope the afib at least with some of these chemo drugs.

Hope you are doing better.

Blessings,

Bluerose

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

I reread one of your posts in this topic and I saw you said that you did have the heart issue checked at one point and it sounded like you figured 'oh well I did that so that's enough'. It's really not. Some after effects called late effects happen well on after treatments are over and something that seems fine today could act up later on.

Let new symptoms and symptoms that won't go away for a couple of days or so be your guide and always check them out. I find that sometimes family doctors blow off a symptom that you feel more strongly about and then you need to go with your gut, your instincts are trying to tell you something.

I really hope you do go see a cardiologist for a thorough workup. Take all your meds and vitamins and supplements in their original bottles as well as a list of your allergies and all your treatments and surgeries - not just cancer - and get a really good heart checkup. Let us know how you are doing.

Bluessings,

Bluerose

truckingalong
Posts: 444
Joined: Aug 2010

Hi, Bluerose,

I have not been on reading the posts for a while. Been busy with family issues. So let me respond to your concern about my heart issue. I am relieved to hear your comments because my heart tends to beat out of whack if I have too much gas in my tummy and other times, it just beats fast even after 5 min of simple exercise like walking or biking. Thank you and I will keep you posted of any info that comes in about my condition.

With peace,
Liz

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