hello everyone, I have two questions I am hoping someone can answer for me, thanks in advance

Gratitude123

I am in month four of recovery after surgery and five months of chemo.  Stage 2B Ovarian cancer was the diagnosis and at the four week check up after chemo there was no evidence of cancer found.  
Throughout my chemo treatments I had a wretched rash/itch each time and 3.5 months after all chemo has been completed I had the same reaction.  I am told this can happen and I am wondering if anyone else has had this experience.  Each time it has been treated with the steroid prednisone which my body does not like, but it is the only thing that works.

Second question both my WC count and my Neutrophil count are below the bottom of the range if that makes sense.  I am guessing this low blood count is also attributing to my continued tiredness and light headedness.  Anyone else out there with this experience?  
In every other way I am doing great, exercising every day, eating well and enjoying life.

Have a wonderful day.

Fearless

Hi @Gratitude123 Welcome to the Ovdialogue community.  It's wonderful to hear your treatment was successful.  As for recovery, it's never as easy and they leave you expecting it to be unfortunately but it sounds like you're doing all the right things.

I didn't have any rashes that I remember so nothing on that front to share from my own experience.  The WC and Neutrofil counts can take a while to rise back to acceptable levels for some though.  I assume your medical team is monitoring this and will intervene though. Mine came back to normal fairly quickly but a friend was still experiencing issues like you until about month four and now into month five seems to have resolved the problem.

As for the fatigue and light headedness, I had that for a long time post treatment.  For me the light headedness came from my potassium levels jumping around a bit in the first year. The continuing fatigue though seems to be a problem we all experience. It took me almost a year before I really felt the return of my stamina.

I'm sure others in our community will be sharing their own experiences with you. But suffice it to say you're not alone. For some of it you just need to have patience..and keep up your exercise and healthy eating of course. The rest, just ensure you're communicating with your health team to ensure you're monitored and if any support is needed that they're on top of it.

Wishing you well in your journey. Please keep us posted on your progress.   

Gratitude123

Thanks so much for your reply it is most encouraging. Yes, my medical team is aware of the "low" blood cell counts and I am expecting an update on Monday as they are currently evaluating my blood work results.

It is very good to know that you have had the same experience in regard to being light headed and that fatigue is common.

I would also concur that the information of what to expect in recovery is perhaps not as thorough as what the information is  in regard to what to expect while going through chemo which did leave me to believe that although it would take time and patience it would not be as challenging as what I have found it to be.  Having said all of that however I am so very thankful to be where I am at today, I am light years ahead of where I was when I finished chemo and so that is where my focus is.

Thanks again, and have a wonderful day. 

Deletedbyrequest

@Gratitude123

I too had a terrible rash from the chemo. Strange thing was it was just under one arm. It got worse with each chemo treatment. Fortunately, post chemo the rash disappeared. I sympathize with you regarding the discomfort of rashes. It makes a difficult situation so much worse.

Gratitude123

Thanks so much for your reply. You are the first to do so. Maybe it's not that common. Probably the rash and chemo chills and the associated prednisone treatment made for my lowest moments. I am trusting that the rashes are now finally going to be a distant memory.

BeamBlossom

HI Gratitude123
I had a few rash reactions during chemo, my doctor added a new medication to my last 2 chemo treatments which resolved the problem. I am now 4 months post chemo and am finding heightened sensitivities to the face moisturizer I have used for years, the problem is only on my neck, I've switched products and nothing works, not even plain coconut oil. 

My WBC was also slow to rebound after chemo, it took 2 months to make it into the bottom end of the normal range. My RBC rebounded faster. Tiredness and shortness of breath is normally attributed to low RBC not low WBC, the low WBC and neutrophils make you more vulnerable to infections, so its wise to be extra cautious during this time.

I found the exhaustion in the first 3 mos post chemo overwhelming, it did improve after 3 months. I dialed way back the exercise I was doing, I focused on high quality nutrition and high quality sleep, making sure day time napping didn't interfere with a solid 7 hrs sleep at night. 

I know it is hard to be patient and a little scary when the recovery takes so long, but hang in there, with time you will gradually make your way back to normal.    

Gratitude123

 Thanks so much for your reply and your insight.  I am about a month ahead of you in the recovery mode and would love to be able to say my WC count has hit the bottom of the range, but not yet.  I am close though so that is encouraging.
I also had medication added to the chemo treatments to deal with the rash,  however it did not do the job. That as they say is all history, the disturbing part for me has been to get this same reaction four months after chemo has been completed.  I have yet to discover anyone who has had this same experience so maybe I am just one of those "lucky' ones.

I have been told by my G.P. that chemo destroys the natural defense mechanism we have in our skin and so we are very vulnerable to skin irritations which I am guessing is what you are describing.  My GP recommended Petroleum jelly and said lotions are often an irritant.  He also suggested a product called CeraVe if you are not comfortable with using petroleum jelly. I am using his suggestion and it has been a huge help for me so hopefully you will find it to be helpful as well.  I stay away from any and all lotions (sadly) as I have some lovely lotions, but the itch and the rash or even the potential for that keeps me avoiding those products. 

Due to my continued problems with being very light headed, dizzy, slightly nauseous etc. I am scheduled for  blood work and a C.T. scan December 1st.  I am trusting I am just someone who is taking longer to get stronger.  I have also cut back on my exercise and like you eat healthy and try to get a good nights rest.

I have never in my life had difficulty with sleeping, but post surgery and post chemo have brought me this new gift.  I do all the right things in regard to sleep preparation etc. but often am awake  repeatedly for no apparent reason.  I am comfortable and it is quiet and dark etc. I fall asleep usually pretty quickly, but it makes for a interrupted sleep and therefore not an ideal time of rest and restoration. If you have any tips in that area I sure would be interested.  I do take 10 mg. of melatonin which does seem to help somewhat.

Thanks again for your reply, all the very best to you as we move forward to good health.

Gratitude123

Hello everyone.  I am now a 16 months removed from my last chemo treatment which is good news. 
My question is:  I haver never felt well or fully recovered since that time. In fact I felt better after surgery and before chemo than I do now. My neutrophil count remains right at the bottom (1.8) and I have had a bladder infection, skin rashes (twice, once needing prednisone) nausea a lot and often weakness.  Having said all of that I do everything I can to live a normal life, walking, renovating, socializing etc., but it is all done by determination and a lot of prayer as my body is so very tired.  Is there anyone else who has had or does have similar experiences.  
I see my specialist in a few weeks and will be having blood work done before that which is all positive. Somehow I just thought I would be in better shape by now.


Background, I had five chemo treatments following the surgery and I decided to stop as was beyond weak, with delayed treatment (twice) due to not being well enough to have the treatment. Also I reacted to the treatments every time and needed prednisone seven times in total.

Thanks in advance to anyone who replies.

Fearless

Hi @Gratitude123
How frustrating to still be feeling as you do at this stage in recovery.  I feel for you for sure.  What I can tell you is that the recovery period is probably one of the most misunderstood segments of our journey and hence, expectations are seldom met.

Each of us responds and reacts to treatment so differently that there is no formula to measure against. Add to that age, pre-existing conditions, general health before cancer, tolerance for discomfort, lifestyle. Al factor into the recovery process.  Somehow we're led to believe that after three months or so you should be able to resume, what they call, your "normal" life.  But for every one it's a new normal of some kind.  For some there fatigues continues stronger and longer than for others.  There is neuropathy that totally disappear or worsen over time.  And ongoing brain fog...just to list some of the most common complaints we hear about.

So you are not unique, yet not part of the norm.  For the effects to last this long certainly needs the attention of your medical team for underlying causes and to help with symptom management. In some cases you may get referred back to your family care practitioner, who may in turn refer you on to specialists related to what ails. In other cases your cancer care team may support parts of your recovery. It is important to understand that your cancer care team are specialist in cancer, and his may be a point in time where you're better served being treated by someone who specializes specific issues.  That's a judgement call to make with your oncologist.

Getting that blood work though is key to starting to understand what's going on. I've just had some kidney issues from which I learned something as simple as proper hydration can have significant impact on everything from fatigue to the bowel to immunity levels.  So that meeting will be really helpful.  I also suggest, if you don't already, keep a journal between now and when you see your specialist. Record each day how you're feeling, any specific complaints, things like amount of water you drank, exercise you got, sleep.  That might also help them diagnose the causes and establish a management plan for you.

I have been in treatment now for five years.  After my first primary treatment I will clear for about a year and a half.  Like most I expected to bounce back almost overnight. But I found myself in the same pack as others, still with fatigue that had improved but not to the extent of allowing me the energy to resume much of my active life. I had constant bowel issues that continued to require management.  Neuropathy, in my lower legs and feet only, actually got worse before it finally started to improve. But I never lost the numbness in the soles of my feet and tingling in my calves.  And the brain fog always seemed to surface at the most inconvenient times.  That said, I have those in my personal network who were back jogging and playing tennis and managing a full return to their careers within six months.

Let us know how you make out with your upcoming appolntment. Hopefully your specialist will be able to provide some assistance with a better recovery for you.  
  

Gratitude123

Thankyou so very much. It is very good to know I am not the only one who did not "bounce back".

You are completely accurate with the statement relating to the after chemo journey as how it truly is a very misunderstood segment of this part of cancer treatment.

I will for sure let you know what the results are of my appointment next month.

Thanks again  your message was a big help to me.

Have a great rest of the day.

P.S. I would say I have had to battle just as hard after chemo as I did through chemo to keep on keeping on with enthusiasm and faith for a healthier tomorrow.

Gratitude123

HI,
I promised to update once I had my visit with the specialist on the 9th.
 I had blood work completed and a CT scan  before this phone visit. The plan had been to attend in person, but due to roads and weather we had to go with a phone conversation.  The good news is my tumor marker number is 11 which is amazing and for which I am very thankful.  Also the Ct scan did not show any cancer in the pelvis, stomach or chest so again fantastic news. 
What remains a problem is that I feel so very lousy. I honestly feel like I have the flu every day, nauseous, light headed, sometimes weak in the legs, sometimes with a bit of an elevated temperature, body chills and this has been going on since the middle of October so not great. The only change in my CT scan was a cyst on my thyroid that had not been there in February of this year. The plan is to follow up with my local doctor to get some blood work done targeting the thyroid area. I am hoping and planning to tough it out until the New year as we have a couple of much anticipated family events. I have my booster and am very careful to limit my contacts so I plan to celebrate life along with my husband, children and grandchildren. 

Any insight is always welcome.  Wishing you all a blessed and wonderful Christmas.

P.S. the specialist thought this might just be a virus that refuses to leave my body, somehow I cannot imagine a virus can linger that long????

HoldingOn

Hi Gratitude123,
A thyroid cyst may have an impact on your thyroid function and that might explain some of your symptoms. I’m not a doctor, but I was diagnosed with hypothyroidism (pre-OC diagnosis) and had some similar symptoms. Abnormal thyroid level test results will indicate a problem. Google symptoms of hyper-and hypo-thyroidism. Hope this helps!

Fearless

@Gratitude123 indeed fantastic news on your CA125 and scan.  It's happy dance time on that front so we're all celebrating that news for you.

However, I was going to make a similar comment to that of @HoldingOn regarding the ongoing unwell feeling.  If they find you do have a thyroid condition that may be the cause of much of your malaise.  But there could be other reasons, like a lingering virus or infection.  The pace of recovery from cancer treatment is unique to each of us but after 16 months out of chemo, no other treatment ongoing and with those great CA and scan results it's hard to believe it is cancer related.  I would, as suggested, start working closely with your family physician to find the root cause.  As I sometimes suggest, treating cancer is the specialty of your cancer care team.....but other underlying issues are probably best put in the hands of those whose expertise is otherwise.  As an example, a friend of mine had been feeling much like you for a long time. Thyroid checked out negative, menopause a maybe but not able to confirm, UTI clear etc. Then finally she mentioned to her dentist how awful she'd been feeling and it turned out the fillings in her teeth, that were of the compound they don't use anymore, turned out to be the culprit.  She had developed an allergy to them. Once they were all removed and replaced her condition disappeared. Another friend was similar to you and it turned out she'd had a UTI for long time...asympotomatic so no one thought to check that out until they did a routine urinalysis and cultured it. 

I think I've mentioned this before but between now and seeing your Family Physician, keep a journal of how you're feeling each (each symptom on a scale of 1 - 10), what you've eaten and what activity you undertook. That might be helpful to him/her to diagnose what ails you. And if you can get a preliminary appointment over the holidays get the ball rolling.  No need to grin and bear it. Diagnosis is often hit and miss with tests and assumptions so the faster you can move that forward the faster they can get you ship shape again. 

Whatever the case, I do hope you have a wonderful time with family and friends over the holidays.  You have much to celebrate and I'm sure what ails you now will get resolved in the new year.  And do keep us posted.

Wishing you a 2022 of health and joy....
  

Gratitude123

Once again your response is very helpful, thankyou for that!  I will keep you posted as we all learn together.

Have a very fine day.

Gratitude123

I have thought so many times of updating, but my story has been interesting and so now finally I feel like maybe I  have reached a good place and can update.

At the end of January of 2022 I went to my family Dr. as knew something had to be wrong as my body was very weak and although I tried to continue with all of my daily activities including my daily walks I often felt like I was ready to pass out.

Two things surfaced.  Number one I had H pylori which is some kind of miserable and painful. (stomach infection is my best  description)  It was treated aggressively for two weeks with three kinds of antibiotics and a fourth medication to ease the stress/pain in the stomach.  

It also was discovered after two emergency trips to the hospital that I have heart arrhythmia which is now under control mostly with two medications.  I recently have had a cancer check, body scan, stress test and all is good.  I remain right at the very bottom of normal for both my white cell county and Neutrophil
  count which is annoying, my iron also remains low so I am working on that with iron pills.

 The chronic fatigue has never left, but I am overall better than I have been for many months. It is now two years since I finished my last chemo treatment.  It most certainly has not been an easy two years, but I remain for ever thankful and grateful for each and every day.

Thanks so much for this website it has been a big help to me.  Enjoy this fabulous summer weather. 

Bobby

Good outcome.  Important to see updates for stories that get started. Site provides much comfort 

HoldingOn

Gratitude123:
You’ve had a rough two years with so many complications. Congratulations on getting through it!  The resilience, strength and determination to survive is amazing. But I don’t think that we manage all that without being deeply changed by the experience. I know that I will never be the person I was before my diagnosis in 2018. The consequences of having ovarian cancer are a daily challenge, and I’m sure this applies to many of us. Fatigue, even between treatments (I’ve had four chemo series so far), is now constant. The difference between us, though, is that I’m still in active treatment and considered ‘terminal’ after so many recurrences. Your chemo ended two years ago; clearly it would be better to hear from OCC members who share your experience of chronic fatigue post-treatment. 

(p.s. Good for you that you take iron supplements because low iron and fatigue do go hand-in-hand. Has your doctor investigated why you’re anemic?  Is there any other treatment available that can help?)

I wish you all good things in the future.  

Gratitude123

I am so sorry to hear you are still going through treatments and your diagnosis is not the greatest.  You are so gracious to take the time to respond when going through such a difficult time.

I also have been forever changed by the diagnosis and although on the outside may look the same (well other than the hair change) I am so much more grateful for all that I have.  Oddly I always thought I was grateful, but it is on a deeper level now. I don't get stressed about many of the things I used to get stressed about as they just don't matter, but on the other hand am much more emotional and much more fatigued by emotions than ever before. 

The medical people all tell me it takes time and iron that was depleted over the last two years will take time to rebuild and so that is the story for now.  Time and patience, time and patience are the words I hear often.

Wishing you nothing but the best and strength for all you are experiencing.  Thanks so much for your response.

Strongwoman

@Gratitude123
  Thank you for the update.  Glad to hear you are feeling better than previously.  The H. Pylori would have taken it's toll on your body as well as the antibiotics to combat it.
  Sometimes the chemotherapy can have an effect on the heart as well which may or may not be where that has come from.
  The low iron is an ongoing battle by the sounds of it.
  I, too, have found that since diagnosis, some things that used to matter just don't anymore.  I look at things through a different lens daily.  I recently found an article and it summed it up pretty nicely while dealing with cancer.  It had to do with things to say or not to say to someone who has cancer.  They categorized people into 3 categories:  those who chose to stay in denial, those who make it about themselves (ie/ my knee is in a lot of pain, etc), and then those who embrace what you are going through and are there for you. I know that I have personally weeded through friends in all of those categories.  Those who choose to stay in denial, don't get to know what I am going through unless they ask specifically which they usually don't as they distance themselves.  Then the ones that try to make it about themselves, I have no time for.  I may have been that person for them prior to my diagnosis but can no longer support them as I navigate this disease.  That leaves me with the third group which is who I surround myself with.  It is what I need and if I tell my friend(s) that I need a day out with laughs or to do something different, they are there for me.  If I say I am having a tough day, they are there as well.  It is what I feel this disease does, lets us know who should or should not be in our circle of friends/support.  The treatments we go through are draining enough without having people that drain you as well.  So, surround yourself with supportive people.  It is good for the soul!
  This forum is an excellent way to communicate our own journeys and the ups and downs of it.  I can tell you that I laugh at myself even more now than I ever did!  The things I forget and laugh at are downright silly at times.  Like the other day it took me until noon hour to realize that I totally forgot to rinse the conditioner out of my hair. What a silly thing to do but on the other hand.....who cares!!!  I brought a bunch of stuff home from my Aunt's house the other day and wanted to keep it and ooops....I only realized on Saturday that I threw it all out.  I did this on the Monday.  Sometimes the brain just doesn't keep up!
  Long and short.....enjoy the day for whatever it is.  I look forward to every day that I don't feel like such garbage that I need to be in bed every day.  If I have to nap on the other days, well so be it.....it is a minor little blip to be able to function at night.  I don't think I will return to my previous "self" but am okay with that.  
  Apologies as I realize that was a bit of running rant or dialogue but maybe just maybe it may help those out there that might be going through some of these very things.

Gratitude123

Your "rant" was the best and summarized in a way I could not how our circles of friends change and how very important those special, supportive friends and family are.

I also loved your stories of "laughing at oneself" as it made me feel so much better about my "inability" it would seem to keep numbers and dates straight. Honestly its ridiculous I am constantly getting it messed up and it doesn't help that one of my heart medications refers to mental confusion, great just what I needed, ha, ha. I now find myself checking the dates over and over again something I never, ever had to do before, however if that's all I have to handle it doesn't matter!  

Thanks for sharing it truly does help.!