Some concerns about continuing oncologist visi... - CLL Support

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Some concerns about continuing oncologist visits!

CharlesLove
CharlesLove

Well I usually don't post but read the post from other people. Here is what I get out of this. I was diagnosed in April of 2017. Prognoses is good. I have had no treatment and have been on the WW scoreboard since. The doctors I have encountered have been poo-pooing me as an alarmist and I have nothing to worry about. Those who have received treatment seem to receive the most attention. Now, it does not bother me but it does bother, I am now 70, me that those younger than I who are on WW seem to be set aside. All of us who have been diagnosed with CLL share the same concerns about our future. It is so easy for doctors to tell you "don't worry, you'll be fine," I do worry. Not much now but in the beginning I did. There is no history of cancer in my family. I was exposed to agent orange for a year, not in Vietnam but the Korean DMZ. 1969-1970. When I go to the oncologist I feel I am wasting my time and theirs, seriously thinking about just stopping because I am paying to hear the same story over an over. Not feeling sorry for myself but just wondering if others feel the same way I do?

32 Replies
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My doctor was caring and truthful all 11 years of my W&W. I was happy to hear that everything was great while on W&W. She kept telling me to live my life, enjoy and treatment would be many years later. I felt well cared for and loved not focusing on my CLL with her encouraging support. If I worried all those years I would have been a wreck. Didn't feel dismissed at all. In my 11th year she said treatment would be sooner than later. She sent me to CLL specialist to get second opinion. I got 2 second opinions. I had a year to decide. I am 15 months in remission and back to W&W and just living life again. 💕

CharlesLove
CharlesLove in reply to GMa27

Thank you! God Bless!

1ofakind
1ofakind in reply to GMa27

What triggered treatment ??

GMa27
GMa27 in reply to 1ofakind

Nodes popped up in neck and then inside my body. Then got anemic even tho I felt great oncologists were concerned about my declining HGB . WBC went up to 225k. I felt great so it was frustrating to realize I needed treatment. 💕

1ofakind
1ofakind in reply to GMa27

Thanks much!

I’m on WandW and feeling fine except for the anxiety before and after every blood test..

WBC is fluctuating and rising ( most recent is 40)and so far all the other markers are good .,.. lymph nodes in neck are small and wax n wane , one in armpit also very small but used to be a bit bigger ....spleen is slightly enlarged... upper end of normal ... liver is still ok ...

The rising lymphs (most recent is 35) are of concern to me...

So appreciate your getting back to me

Be Well and continue to

Enjoy!!

CharlesLove
CharlesLove in reply to 1ofakind

Had one large lymph removed during unrelated surgery. I too have WBC that goes up and down. I am trying to just live my life! Thanks for your comments.

God Bless

CharlesLove
CharlesLove in reply to GMa27

I pray for your healing! It is odd that you feel fine and then you are on a treatment program. Take care yourself!

GMa27
GMa27 in reply to CharlesLove

Treatment was last year. But yes was grateful I felt good all those years. Some do not. They have some pain due to nodes leaning on organs or different parts of body. I did have trouble turning my neck to opposite side of neck with nodes for a year. That confused me. But realized after treatment when the stiff neck was gone, I could of had one hidden.

Only thing I had last 3 years of W&W was gastroparesis developed. Debilitating digestive disorder with no cure. My gastro doc said impossible to get from CLL. Only a virus, diabetics or people after stomach surgery can get it. Mine was supposedly from internal virus I never felt. Thank goodness for chemo! After last treatment... 6 months later... miracle... my gastroparesis was gone! My oncologist figured out it did come from my CLL. A node must have disturbed the vagus nerve and caused it. In some cases gastroparesis was worse than having CLL. Google it. ... devastating diet for rest of my life. 💕

CharlesLove
CharlesLove in reply to GMa27

Thanks! I do have an enlarged node the vagus nerve. Needed information! Appreciate it! God Bless

GMa27
GMa27 in reply to CharlesLove

Luckily you don't have gastroparesis. You would know it. But if one day after you eat and have severe pains, see a gastroenterologist and have them give you a gastric elimination test. Symptoms I didn't realize till later, were eating a full meal but still starving. Can't lose 1 pound in 2 weeks of dieting. Those were signs I missed till my severe attack of pain.

Pooldude05
Pooldude05 in reply to GMa27

How low did your hemoglobin go , what were you treated with ,and how are you doing now,my hemoglobin and platelets a have been going down to fast for comfort, I am currently waiting for ins approval of ibrutinib

GMa27
GMa27 in reply to Pooldude05

It went down to 8.2.

I tried to hold off few more months before starting chemo. Had a trip planned. Luckily I cancelled. By time I got my port and BMB my HGB was 7.9. At treatment I was 7.5. It was quickly going down.

I only needed 3 cycles of FCR. I have been in remission 15 months and feel great. HGB is 13.1

Pooldude05
Pooldude05 in reply to GMa27

It is good to hear you are doing alright and only needed 3 cycles of FCR instead of the usual 6 it is in my hopes and prayers that you get a very long remmision 😊😊😊

Hi CharlesLove. it's important to see a CLL specialist, not just an oncologist - even if you are in W&W. A CLL specialist is less likely to minimize or make light of your legitimate concerns.

No responsible CLL specialist would tell anybody "Don't worry, you'll be fine" - because there is absolutely no way to know who will be fine, and who will progress, and who will have bad complications - either from CLL or from treatments. There is just no way for even the best CLL specialist to predict that.

A general oncologist, on the other hand, is going to be less informed about CLL and probably assumes if you are not in dire need like his solid tumor patients are... then you are fine. I would not want to waste my time with a doctor like that.

I hope you get yourself referred to a CLL specialist. It could make a lot of difference for your peace of mind and future treatment.

I am about to do that! Best response ! Thank you so much!

I understand how you feel. I think these physicians see LOTS of really sick people, near the end of their lives, and maybe that is why they do not see our concern about the future. Apparently the treatment makes people feel much worse than the condition of most watch and wait patients.

AdrianUK
AdrianUK in reply to PacificCLL

It’s not so much about how the treatment makes people feel but more about specific side effects that not everyone gets. Some people have very smooth journeys even with the older drugs like chemo. But none of the drugs is without risk. And so we wait till the risks of the drugs are out weighed by the benefits. Or to put in another way till the risk posed by not treating our CLL is worse than the risk of treating it.

Many people feel a lot better after treatment. I’m unusual in that I got severe fatigue in the run up to treatment and after the first treatment that continued to worsen to the point I was admitted to hospital unable to walk safely to the toilet. But after the second chemo dose that started to improve and I’m now much stronger than I was at that bad point tho still too weak for work etc. So I’m an example of someone who’s quality of life has improved through treatment as well as almost certainly my length of life as my disease was accelerating at the time.

Hidden
Hidden

if you have regular blood tests and don't see an issue-they won't either. My doctor tried to do 3 month appointments and i said yes-however i insisted on once a month blood test. For my peace of mind-one way or another

cristo
cristo in reply to Hidden

I´m 56 yrs old, diagnosed CLL in march/2018, doing WBC tests each 3 months, in the beginning I asked do montly but now I´m ok do it quarterly! Today it is 14K... stable.

Hmm. If you were going to Moffitt in Tampa Florida and your white count was 100, you would qualify to be in the clinical trial my hubby is in right now. The trial is to see if a patient does better with earlier treatment, rather than later. That said. Have you had the FISH test to see your mutations? You really need that done. Hubby has the bad ones 17p and MP53 (I forget this one). Which means that he would not be a candidate for chemo. So,I need to find out if the 17p is necessary. I know this trial is going to be taking patients for quite a while, years actually. They want the combo of meds to be approved for CLL by the FDA.

The only side effect he has had is a 3 week bout of fatigue but it’s over.

The meds are Keytruda (Pembrolizumab) and Ibrutinib.

The FISH test is really important for all, is my opinion. When you were in Korea, My hubby and I were in Okinawa. They brought all the Jeeps that had been shot up in Vietnam there. We don’t know if they had Agent Orange on them or not.

Linda

CharlesLove
CharlesLove in reply to Spacee

Yep! I have been fishing!

Charles, if you have any doubts at all, trust your gut feelings. See a CLL Specialist. I've come to the conclusion that few Doctors know much about this disease and particularly about the huge amount of recent-ish research findings.

I shudder to think where I might be or not be if I had not found the CLL Specialist I now see. Only a good specialist will know what to test for and how to examine you. Do not go to a primary care doctor, a general haematologist or an oncologist. And make sure to see a well respected CLL specialist who may work with other blood diseases but is deeply interested in CLL.

I know this sounds like overkill, but just think how secure and peaceful you'll feel if your illness is taken seriously and you are checked out and optimally monitored by someone who understands what your gene profile means and what exactly to check on symptoms wise. Blood results are not the only indicators of disease progress.

Take care, you deserve it after having served your country as you did.

CharlesLove
CharlesLove in reply to BluMts

Thanks for the kind words! I will be contemplating a visit to a CLL specialist! I'd serve my country again in a heart beat!

20 months ago I was diagnosed CLL, from this date on, doing WBC test each 3 months.. lymphocytes have grown since March 2018 from 7k to 14k. In fact, from 10K to 14K in the last test. Therefore, looking forward to appoint a new visit to the doctor.

Good morning!

Switch doctors, and get a CLL specialist.

If you made it to 70 before diagnosis, thats

a good sign!

Its a free country - don't put up with any crap!

Hello CharlesLove

I suspect your oncologist does not want to add needless worry to your life. Post treatment I am doing blood test every 3 months because my CLL was very aggressive. Before treatment I went from 6 months to 3 months to 1 month then every week after B+R. Even if my CLL comes back, the 3 or 6 month testing will give me enough time get ready for another round of treatment. Blessings.

No not wasting your time!!! I didn’t see how many times a year you are going at first for me it was monthly and I had the same feelings as you about what the heck am I going for when’s there’s mild to no change made a deal with doc to cut back to twice a year which helped me mentally as then I wasn’t always worrying about my bloodwork!i was 45 at the time now 12 years later I’ve started treatment with imbrutinib and it’s going really well. Try and spend your time living and not worrying. As we are truly fortunate having a chronic cancer diagnosis as opposed to an Acute! Stay well and good luck if I could change anything about my CLL it would be not to have wasted time worrying about it!!

Thanks for the info!

CharlesLove, I was in Watch & Wait for almost 22 years, and it sounded like a broken record..."you look good, your bloodwork is reasonably good, and you're feeling good, so I'll see you in a year" (changed to 6 months as my white count climbed). At first it bothered me (DO SOMETHING...ANYTHING!), but my oncologist would also say that the longer we could wait before starting treatment, the more options I would have. She was right...I am currently on venetoclax, and when I was diagnosed in 1997, chemo was it!

I would recommend for your own peace of mind to see a CLL specialist. I saw one when I was initially diagnosed, but since it was obvious nothing was going to be done and I was hours away from the facility, I worked exclusively with my local oncologist. That was fine until last year when she opted to start treatment (ibrutinib), and I was manifesting side effects she had never seen before. At that point, I decided to head back to MD Anderson, and I am definitely glad I did.

I have experienced similar minimization by the hemoc and staff. But they are the only game in town. She is listed at the CLL society as one of the CLL specialists in the US.

I did end up needing treatment sooner than they expected. My labs still indicated stage 0 leading up to a bone marrow biopsy. That ended up showing 90% involvement. When asked about the stage at that point, was told it was important not to get caught up in the staging. Even though up to then I was told it was important to focus on that I was a stage zero.

Not wanting to rehash everything, just will say enough has transpired that I am trying to stay under the radar and save any questions for appointments.

Things could have been changed if doctors just listen and then eliminate the fears. That statement in itself would send them rocking! Thanks! Hope you are feeling better! God Bless

Thank you, Charles.

You’d think it would be obvious to try to eliminate the fears and reduce the stressors. And even maybe more efficient in the long run.

God bless you, too. 💕

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