latent effects after NED

[kklarocca]

Hi,
I know most of you know that I was doing very well up until the last five or six months and know we have many others that have been through treatment, reached NED and are struggling with some lingering or latent effects. At the suggestion of Karl I wanted to maybe see if we can find out how many of us are experiencing symptoms that are either getting worse or not getting better as they should. Maybe if there is a common denominator from our treatments and symptoms we can get some relief or help each other get to the right type of professional. I am just grasping at straws on how to manage and I welcome any suggestions on how to do this. Anyway, I will start.

NED May 2007 lingering fatigue, and neuropathy
Had a great summer with only the two symptoms above.
September 2007 to present - fatigue worsening, bloating after food consumption, chills and low body temp, hot flashes, headaches, pain in arms and legs worsening when laying down, freezing fingers but not hands, burning sensation of skin on my back, itchy left armpit, weight gain, low blood pressure, poor sleep, nausea that feels better with food, swelling of body from hands to feet, occasional chest pains, low energy level and I am sure I have left things out but even my cognitive problems are worsening. I was very active prior to these symptoms that have gradually gotten worse since September. If anyone else would have any similar experiences or knowledge of what could be the cause or what type of medical professional would handle these issues, I would be very grateful for myself and any others that are in need as well.
Thank you for your time.

P.S. I know depression isn't part of a bodily pain but I should include that I was feeling very depressed as well.

Addition that I forgot - recent blurred vision

[WGM_ALA]

NED August 2007 (earlier actually midpoint through treatment) Lingering Effects: Pain in upper Legs, and neck, + random non reapeating areas and fatigue and trouble concentrating. Pain level seems to go through peek and valleys but changes slowly (weeks at a time) and fatigue lasts several days at a time until I get a chance to sleep 10 - 12 hours. As for the concentration, well maybe it’s because I am too tired to pay attention.

Hope that helps someone.

[afort]

NED July 2007

Lingering neuropathy in fingertips, very sensitive to cold
Tightness of all tendons
Stiff joints
Vision worsened
Chemo induced menopause, with all of its' associated joys
Fatigue after Rituxan maintenance, lasting several weeks


Cancerworld and Beyond!

[tmorgan]

NED 11/2007
Transient fatigue but lasting several weeks after R-maint.
Transient hip pain, worse after exercise
Some digestive issues
Occasional insomnia
Short term memory issues
Poor concentration
Skin issues from dry skin

[JerryOH]

Great topic!

NED: August 2005
Ongoing symptoms: fatigue, cold hands and feet during the cold weather, continuing bowel issues (exacerbated by the chemo), have now developed bacterial infections on my skin (lowered immune system?)

[connie0812]

NED 08/2007

Cognitive issues to the point of extreme frustration on some days.

Very, very dry skin

Not too bad (in my opinion) considering all the chemo I've had.

[KarlS]

Hi Kelly,

Thank you for taking the initiative on this.

My first thought is that the medical system (in general) is not very good at providing help when the underlying causes are difficult to define or diagnose. For example, if the symptoms are clearly related to diabetes, or heart disease, the protocols and tests are in place, and effective. Otherwise, you might say the help provided will be uneven.

Recognizing the challenge that confounding and uncertain causes present to doctors, I think we have to work doubly hard at providing in summary form our medical history ... which could help our doctors to connect the dots (see possible relationships) to arrive at a diagnosis and appropriate treatment plan.

The second way we might help our doctors be better doctors could be to record and provide a concise diary of symptoms (pain, range of motion, sleep disturbance, etc.), perhaps in a tabular format, which lets us easily record the symptoms that we experence along with the time of day, duration, locations, grade the severity, specify the type of pain (burning, sharp, radiating ...

Another thought is that by exercising daily (within our limits) we can record our performance in ways that are objective and be able to show which way we are heading in our ability to do basic actvities, such as walking (record time and distance) , stair climbing, .... In this way we can perhaps benefit from the activity but also present objective information to our doctors that will be more difficult to ignore and more likely to help the doctor understand our condition and create a treatment plan -- and to know if the treatment is helping.

Lastly, given the time-pressure many docs are under, the written information we provide (including our treatment history) should be easy to review at a glance ... avoiding long paragraphs, and should clearly list our questions and health objectives. If our doctors cannot help us, then we should ask for a referral; but also ask neighbors and friends to recommend a doctor who is a problem solver. The above should make it easier for second opinion doctors to understand your situation as well - to formulate ideas or refer you to someone who can help you.

That's all I have for now, except to note that Joanne still complains sometimes about stiffness and soreness despite being almost 4 years out from treatment, which she attributes to treatment. It's difficult to know how much of what we experence is from treatment, aging, secondary and possibly unrelated conditions, or a combination. With some luck, persistence, and a plan I think we can often find a way to make it better. Certainly, advances have been many for pain management and also treating depression ... and so there is good reason to be persistent in seeking help.

[Libby]

When my husband first had treatment in 1999, it left him with nerve damage in his right hand. So, he learned to write with his left hand.

Then, he had a stem cell transplant two years ago. He went last week for his PET Scan results. His scans were clear. However, since the transplant, his counts remain low. This keeps him tired. Also, his memory is not as good as it once was. Of course, being 55 years old has some impact on the memory!

Regardless, we are having a good life and he is glad to be here!

[kklarocca]

Thanks Karl and I will try to make an organized diary. I will be needing it as Brigham and Womens called me back and wants me to call Dana Farber to be seen by their non-malignant hemotology department. So I would like to have enough proper documentation to show these issues. Thank you again for your time.

[Heather717]

Here's my list of problems since treatment has been complete:

Worsening fatigue
Continued/Worsening chemobrain
Lightheadedness
Vision changes
Pain from middle of back to shoulders down arms to fingers with little relief
Occasional chest pain
Tachycardia
Low blood pressure
Hot flashes
Sensitivity to cold
Ice cold feet always
Swollen legs
Occasional hip pain that will last for days
Abdominal bloating, especially worse after eating
Weight gain and inability to lose weight
Nausea relieved by food/something in stomach
Burning sensation on skin that sometimes feels like stings
Extreme mood swings