Do I need someone to oversee?

[Clsmith]

This post might be a little long and so I apologize in advance.

I was diagnosed with ITP and lymphoma in the spring. At first the doctor said it was not CLL. He finally decided maybe it was SNHL. But since then has said it is just too early to tell for sure what kind of lymphoma it is. Is that normal?

I found out about my blood because of a doctor's visit regarding diarrhea which had been ongoing for months. The blood showed no celiacs, but did turn up the irregularities that sent me to the heamotologist . Originally my platelets were 82 and he put me on steroids. The platelets rose to190. My next visit was last Friday and I asked for a little more info. This is what I got:

Platelets 89

Lymphocytes .72

White 7.2

Red 4.57

Hemoglobin 136

Now this blood was taken while I was on antibiotics for a UTI that I had that had visible blood in the urine. This was the 3rd. UTI in 3 months. Should I have been concerned about the blood results? The doctor was not.

I thought it was interesting, too, that I had had a very stiff neck for weeks that went away with the antibiotics. The doctor saw no connection there either. Perhaps I really am being alarmist.

The diarrhea has not gone away andI now have dermatitis on my hands that I have never had before .

Just for some added info

I am on medication for my thyroid and a gynaecologist has put me on Premarin creme to try to help with the numerous UTIs . I am 66 years old and female. I am 5 foot 3 and right now weigh 113 pounds- down from 122 in the spring.

Do I need to find one doctor to oversee all the quirky things in my health right now? Or do I need to calm down and wait to see my heamotologist as he requested next April.

[Cllcanada Top Poster CURE Hero]

I can't give a medical opinion, but are you under the care of a hemaetologist in a large center, preferably well versed in CLL, NHL?

Have you had a flow cytometry?

If it was me, I would be seeing my hemaetologist much sooner, perhaps October, if for no other reason than to start ruling things in our out.

A 6 month wait... isn't a great idea, in my opinion...you need to start getting some answers, so at least it will put your mind at ease...

Please let us know how you get on... squeaky wheel time...

~chris

Just to clarify do you mean SLL. Small lymphocytic lymphoma (SLL) the other side of the CLL coin?

[Clsmith in reply to Cllcanada]

Thanks for your quick reply. Sorry... What I meant was splenic marginal zone lymphoma. I am seeing a doctor in Barrie Ontario. Which part of my note would you say is concerning? I am so confused by all the different things going on.

[Cllcanada Top Poster CURE Hero in reply to Clsmith]

I think my concern is general... that you have a number of issues and a lack of an overview...

Regrettably Ontario does not have an integrated medical record system... so all your doctors are working to some degree in a knowledge bubble.

I think you should look south and get a second opinon at PMH, Sunnybrook or Jurvanski in Hamilton... all these hospitals have some form of intergrated, whole patient approach... and all have lymphoma experts...

Perhaps start with your GP and discuss the problems you are having...

I found my GP was a great coordinator for my healthcare, when I was in treatment for CLL, had a Richter's transformation, subsequent shingles and chemo induced heart failure, radio therapy and colon cancer... and so on

She was my 'go to' doctor and she expedited my care, with many specialist... but this was also in BC with a unified medical record system... 😀 Ontario is woefully behind in this regard, so I now have all my specialist at the General Hospital, in Ottawa... at least they can all access my records, labs and scans...

Co-ordination is key... ask questions and get answers.

~chris

[Clsmith in reply to Cllcanada]

Thank you so much. I will definitely look in to this. Your recommendation is what my children have been wanting me to do.

[Soosie16-USA]

I would also urge you to see someone sooner rather than waiting 6 months. You seem to have a lot of different things going on - especially with the UTI's. My husband had an UTI with hematuria that could be seen by the eye which prompted his GP to order a cat scan to check for kidney stones. No kidney stones, but a cancer in his bladder. This is obviously a very rare out come from checking out an UTI, but it has made me realize that we have to be our best advocate sometimes to be sure we know what it going on. I think I would try to start with my GP and list my concerns and let him/her be the lead in identifying any on-going problems.

Wishing you the best of luck with all and hope you are feeling better soon!!!

Susan - USA

[Clsmith]

Thank you. Have called my gp. He is away and I have an appointment for Oct. 14.